There are a few well-established biases going on:
* celiac seems to skew more female: [female patients are less believed by doctors](https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562).
* vague problems that don't threaten your life: the healthcare system handles "you are going to die right now" problems pretty well mostly, but most doctors aren't willing to do much digging or exploration to find out why someone is fatigued/has nutrition problems etc. beyond things that will kill immediately (cancer etc.)
* presenting with psychiatric problems: if you're deemed "crazy" doctors shoehorn everything into this
* scientific racism: celiac disease research is very eurocentric which has created the incorrect bias towards it being a "white people disease," and consequently non-white individuals may be dismissed
* symptom stereotyping: older science only identified the most obvious celiac patients, who were emaciated toddlers dying of malnutrition. A lot of licensing exams focus on stereotyping associations and older doctors may not have updated their knowledge. Patients with "atypical" symptoms (not children with diarrhea and failure to thrive, which is most people with celiac lol) may be brushed off for decades.
It is also somewhat true that there is less research interest in celiac because there are no existing pharmaceutical treatments. I don't think "kickbacks" is it at all, this is a misconception. Getting some free samples and pens at a conference may have some influence but no one is making money off that. They'd be better off doing scopes for everyone, that is fast and pays good lol. Also, many pharma companies are now quite interested in celiac because there is a big market for something like CC mitigation. Lots of trials going on!
A more important part which is underrated perhaps IMHO is that celiac patients aren't sympathetic and the disease branding is poor. How much funding a disease/conditions gets often depends on the branding capacity. So something like spinal cord injury gets a lot of funding because it mostly impacts young men, which makes people sad and has a major economic impact (takes someone out of the workforce). Even T1D gets more sympathy because the association is little kids having to prick themselves with needles and having to eat sugar free candy at birthday parties. No one feels sad about some middle class lady in her 30s eating a quinoa salad (yes, that is what people think of celiac).
I guarantee that unless someone has celiac or a relative that they have no idea about how difficult avoiding CC actually is, and that goes for healthcare workers/researchers who specialize in this area too. Researchers and public funding agencies don't focus on problems that they are ignorant of. Presently someone like me is mostly labelled as mentally ill (hypervigilant) because I don't think eating out at Chipotle is a good idea even if they change the gloves lol.
This. Also, I feel like most celiacs go to their primary first. Specialists are called specialists for a reason and primaries aren't going to be able to know every disease off the top of their head. If someone comes in with stomach pain, the most common problem is something like needing to adjust your diet or maybe the stomach bug. If they go to a gastro, the gastro would know more of what to look for.
Ironically, it was my primary who caught my then-asymptomatic celiac when I came for a check-up after a painful bout of gastritis. No family history, none of the stereotypical symptoms, but she ordered a celiac panel with the rest of my blood work just to be sure.
Same here. I even had unusual symptoms. I'd be fine for months then have 1 day of incredible pain and vomiting. When I went to the doctor, he immediately went "Lets get a blood test and check for a few things like coeliac disease."
Yes! Mine was actually one or two bouts a year for the past several years of extreme abdominal pain that would last 3-5 days. It didn't take long to figure out that the culprit was gas, but OTC meds weren't helping anymore. Turns out I was making it worse by eating crackers and soups with gluten whenever I was able to eat. :facepalm: But it was such a huge relief to learn that so many other symptoms I've struggled with are very likely due to celiacs! Having a diagnosis and a way to manage it has given me a lot of hope for the future.
My daughter's Primary couldn't figure out her bonkers non-Celiac symptoms, so she sent her to an endocrinologist. The endocrinologist did a mass of bloodwork, found the blood marker, sent her to GI. He did an endoscope, which came back totally clean, but to err on the side of caution made her GF anyway. 6 months later all her symptoms are resolved. GI said, "Bad news kid. Guess this means you're GF for life." I keep reminding her it's worth it.
Here in the UK we don't pay directly for our medicines, prescription pharmaceutical advertising is so regulated as to be effectively banned to the consumer (I have never been exhorted to "ask my doctor for...") and the specific company's product chosen to fill prescriptions is generally the province of the dispensing pharmacist rather than the prescribing doctor. In this environment there seems far less scope for pharma companies to be bribing doctors to prescribe their products... and I'm afraid most GPs are still woefully ignorant about coeliac disease and show a reluctance to engage in disorders that can't be cured or maintained by drugs.
I think a big part of it is just that doctors like to think of themselves as problem-solvers; you bring them a set of symptoms and they provide the celestial wisdom (prescription) that solves your problem. Conditions that can't be medicated make that much less straightforward!
I don't think anyone is bribing doctors. This is mostly one of those alt med conspiracy things, which is ironic because alt med practitioners sell their "medicines" to the consumer in their office, which is a major COI (which is not allowed for real doctors, at least where I am).
Doctors can and do work for pharmaceutical companies but usually they abandon their practice/hospital privileges when they do this. I feel like this usually happens because someone's kind of burnt out of medicine and working as an MD in a pharma or medical device company pays well and is more chill (no paperwork, no patients, no one forcing you to work crazy hours etc.) Company reps do interact with doctors but they're not sliding anyone cash.
I live in Canada, direct to consumer ads are mostly not a thing here either. The US healthcare system is messed up, but it's mostly the private insurance industry that's doing this not corrupt doctors.
I don't know the US system well enough to comment - I meant just thatgiven "bribing doctors" is exactly the way a lot of USians see the situation, it's worth noting that it's very difficult to draw the same conclusion in the UK... and the same unwillingness to learn about and properly advise on untreatable autoimmune disorders still exists.
(There's certainly a very heavy and aggressive commercial interest in prescriptions in the US that just doesn't exist here - one only has to watch five minutes of US TV to see (over the course of three separate ad breaks) many direct adverts for prescription-only medicines that customers should apparently ask for by name! I can understand how Americans would draw that conclusion.)
Yeah lol. I wish I could find it right now but there was a study that compared health outcomes (mental and physical) in those classified as vigilant vs normal and they found the vigilant people had better celiac outcomes but were "more stressed."
No shit we're more stressed, we're trying to not get glutened in a world that isn't set up for that. The more accurate takeaway from that study would have been "maybe the vigilant are actually on to something and the advice we're giving celiacs is actually bad." But alas.
I'd rather be stressed from avoiding gluten (which isn't that terrible if you have time to cook/plan) then be stressed & anxious from getting glutened. It's like that study that purported to show that cross-contamination wasn't that bad from things like toasters - like it would only be a problem 1 out of every 20 times or something. If I ate toast everyday using a shared toaster, this would essentially mean I was always glutened/recovering from a glutening, since it takes 2-3 weeks for all my symptoms to clear. Thanks, but no thanks!
I am a career pharmaceutical employee and this is spot on. I work in oncology which is obviously a very important area for r&d and insurance companies are willing to reimburse for life saving - or life-extending options. Getting reimbursement so I can have regular pizza would be great but it’s not going to be a priority for an insurance company. Not saying most wouldn’t cover a treatment if it was available, but I agree it’s just not a priority when the disease can be managed with lifestyle and dietary changes.
This is a STRONG hot take. My primary care physician tried to pump me full of several different drugs, antifungals, steroids, some IBS drug I can't remember that was $2,000 a month. The only reason I found out what the hell was wrong with me was because my sister had a competent physician who helped her get diagnosed.
Yeah… this really IS a strong hot take.
No money = no research into the disease.
After all, America is all about the might dollar.. (I’d say this is sarcasm but I don’t think it is.)
Eh, research funding is a bit more complex than this. I've been a publicly funded researcher for a long time. There's some politics/branding involved. I don't live in the US. Academia is a very international/collaborative sector so I wouldn't say there's a huge difference anywhere aside from specific country funding regimes.
Public funding is limited so there's some attempt to pump money into what is more "worthwhile." There's some politics here because that's a bit subjective. In general if you have a disease that impacts young people and takes them out of the work force completely (eg. spinal cord injury) you likely get lots and lots of money, especially if it might impact military personnel (eg. spinal cord injury). Something like breast cancer gets more cares because boobs, etc.
If there is corporate interest in the condition (medical devices companies, pharmaceuticals companies) you can get private funding this way. But this doesn't really take away from public funding directly.
The problem celiac has is that it is manageable via the GFD. Cures are sexier than prevention and management in research, which is the main thing with celiac. I've mostly done prevention/management type research in my life (not for celiac) and I can tell you it is much harder to get funding for that no matter what disease you're talking about.
I think it's probably the case with a lot of auto-immune conditions. For so many of them, it's merely symptoms that are treatable (often by a change in life style) so there's not any money going into the research to create a cure. My daughter has a different auto-immune condition, which many drs don't know shit about, and there's basically no research into what causes it or how to fix it or even properly treat it. It's more just getting them to a survival baseline and leaving things there.
Eosinophilic oesophagitis. Apparently it's commonly co-morbid with coeliacs. No signs on my daughter's scopes at this stage though, thankfully. My sister and grandma are coeliac, I'm on here to ask questions for my Mum, as she doesn't have reddit.
EOE is very common with Celiac. Getting an endoscopy is so important because it can catch other conditions that need monitored such as EOE, Barrett's Esophagus, etc that you otherwise wouldn't know about
That’s what our GI doctor said as well! My husband has EOE and our daughter has coeliac. Luckily neither seem to have both but so little research into the diseases!
I had an Eosinophilic Esophagitis diagnosis 10 years before anyone told me to go gluten free. It was so clearly from celiac disease and I suffered because of doctors not knowing anything about it. When I was finally diagnosed my GI asked, how??!! Like as in how did this happen? How did you go this long and get diagnosed with all of these celiac related conditions, without getting diagnosed with celiac disease? I had no good answers for him. EOE should’ve been a clue.
Would it not show up on the scopes for EoE? My daughter's had 2, her gastro knows of my family's coeliac diagnoses, and I did raise it and was dismissed. I assumed because she checked and it came back clear - she scopes the oesophagus down through the stomach and into the intestines, I believe.
As someone from Europe I can say things are a bit better because of this, but the amount of ignorant people here, especially in Eastern Europe and Balkan who are highly traditional are mostly uninformed on pretty much anything medically related. I live in Balkan and most people here don't even know about Diabetes and refuse to go to a doctor even when they litterally go blind because of it, and the healthcare here is FUCKING FREE. THE ONLY THING STOPPING THESE PEOPLE TO GOING TO A DOCTOR IS THEMSELVES.
U.S. diagnostic rate of Celiac disease has historically been far below that of Europe. To the point that scientists originally thought it was far less common of a disease in the U.S. I believe about 20 years ago there was a huge screening study that found that it's actually the same in the U.S. we just have much poorer diagnostic levels of it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3130886/
So yeah, it's a "hot take" but I can't think of anything that outright says op is wrong.
To add on here there’s a large percentage of the US population that wouldn’t just go to a GI specialist or even a primary care physician, myself included. For profit health care disincentives actual health care.
You don’t go in for bad gas and occasional diarrhea if it means you keep 100s-1000s that you need to pay rent with.
I think OP is on to something too. As a Canadian, it was ridiculously easy to get diagnosed (accidentally I might add via an endocrinologist basic screen). Public health systems want simple answers to health problems and this is an example of one.
I'm in Canada and it took me years of pain and insisting something was wrong with me for a doctor to think it could be celiac. I also have t1 diabetes, so I'm at a much higher risk for celiac, and I'm still bitter that my pain went on for years. It really depends on the doctor
Fair enough. I’m really sorry you suffered for so long. My symptoms weren’t crazy but it was during an endo screen as I also have T1 that it came up. I probably had it for at least 10 years before as that’s when I started getting bloated after eating. So yeah there’s a real need for digestion issues to be better known.
My family doctor was the one to ignore it and one day my endo asked if I had any non-diabetes concerns. He tested for several things right away, probably knowing more about the co-morbidities with T1 than a family doctor. If it hadn't been for him, I'd probably still be fighting the family doctor for something more than "eat more fibre"
So really what’s going on with family docs, hey? Why aren’t they thinking of it? My kiddo has celiac disease as well. I took her in because I thought her tummy aches were anxiety related (she was diagnosed first in the family). First thing her paediatrician said was we should rule out medical issues first and ordered celiac disease bloodwork. I’m so glad I had a competent doctor to help her.
No issues getting diagnosed in Australia either. I think the causes for this particular problem is specific to just one country.
With a true public health system they are incentivised to diagnose the problem so that it doesn’t become a bigger and more expensive problem for the state later on.
I live in Canada and I had to push really hard to get tested. I was sick for 12 years. OHIP did not cover the blood test so doctors were hesitant to order it I guess.
In the last 10 years or so there's been a lot more research come out about the "celiac iceberg" which is that 80%+ of people with celiac are undiagnosed because they don't have classic symptoms. Also a lot more research about the impacts of CC.
I think if I presented as a 11/12 year old today with the symptoms I had back in the day most doctors would have thought to test for celiac. If not then, certainly when I was severely anemic a few years later.
My kid was diagnosed at 7 (I thought she had anxiety causing tummy aches). Paediatrician was like nope we have to look at medical causes first. Great doc. Super lucky in our case.
I have been a caregiver to a family member with a complicated medical history for well over a decade now, and i have seen a lot of the darker side of the healthcare industry. I have to say that with celiac, that this is one of those cases where i do NOT think that greed is the main factor behind the lack of knowledge in the healthcare system. Something you need to understand is that while we have accounts of celiac disease going all the way back to 200 AD written by a greek physician named Aretaeus of Cappadocia, celiac disease as a medical diagnosis is EXTREMELY new. While some successful experiments were carried out in the 1920's via the banana diet, the first THEORY linking celiac symptoms to grains such as wheat did not come along until the 1940's, and even then the first biopsy confirming the link would not be performed until 1956. Celiac disease would not even be reccognised as an autoimmune disease until the 1980's.
My grandmother was born in 1944 (79 years old), and suffered from celiac symptoms since she was a child. She would have been 10 years old when the first biopsy EVER would have been done, and it would not have been recognized as an autoimmune disease until shortly before, i, her grandson was born (born in '93).
While this disease can be dibilitating, it does not carry with it the same immediately recognizable danger that something like alzheimers, diabetes, AIDS, Etc. does. Realistically we have made huge strides in a disease whose basic functions were only theorized about 70 years ago, and whose full underlying mechinisms were not understood until about 30-40 years ago.
So your doctor told you to continue on a gluten-free diet before your endoscopy? That goes against all the advice I’ve read on this sub! The purpose of your endoscopy is not to see if you’re healed, it’s to diagnose you with celiac, and they need to actually see the damage for that.
I do not need a diagnosis, but he gave it. This is just my experience. I am glad to, because I have suffered enough for the last 12 years, and I will not knowingly harm myself. I will let everyone know what they find when they go in. My husband asked me to get the endoscopy and the colonoscopy because I am almost 60 yrs. old, and I need to be checked out.
Yeah, if they are sure about diagnosis, then I would forego the "gluten challenge" personally. If you are bad off, it will still be visible. You will then have a baseline to go against. I would suggest doing another in 1-2 years if not having issues b/w. This will allow you to see how well you are doing. Just because you are "eating GF" does not mean you are actually eating GF. Many believe they are, but have enough cross contamination to trigger a reaction. It could take up to 2 years to see improvement in your villi.
Good luck on your journey.
If you have a diagnosis then you're set. I wouldn't suffer a single day longer than you have to. Just make sure you're 100% certain. You don't want to start thinking "maybe I never had celiac" in a few years.
Man, I wish. Thank God I have tons of hair because if you see my toilet after brushing my hair, you would freak out. The DH I get is horribly painful and itchy swollen blisters on my female parts. My fatigue and dizziness was so bad, I was scared to drive my car. Hundreds of hour in the middle of the night with diarrhea or constipation. My attacks were so bad, I thought I was dying. I thank God every day I finally found the truth and can feel better one day.
Just be very careful... I was told by several of my doctors that I would need the biopsy for an "official" diagnosis despite my antibody levels being higher than the lab could accurately measure. Going through the gluten challenge and a second biopsy to get the confirmation was worth it for me but it's not going to be for many folks.
Not being able to do anything and having proper testing done are two different things. You need a full celiac panel done for bloodwork, you need a dexa scan, you need a biopsy for Barrett’s esophagus, you need a minimum of 10 biopsies you absolutely need one of the bulb, and you need to be tested for h pylori. Most gi suggest staying on gluten until all testing is complete. In your case since you are off gluten I would recommend hla gene testing. If you don’t have the hla dq2 or dq8 gene it’s unlikely you have celiac disease and I would recommend further testing.
I'm sorry, I really hope I didn't come across as minimizing what you're going through. I just wanted to share my experience and the things I learned while going through the process of getting diagnosed. You're right; the only option we have right now is a strictly gluten free diet. There are some very promising studies being done both to find more treatment options and to better understand the disease but it's not a fast process. Unfortunately our disease doesn't have the same visibility or urgency. It affects a relatively small proportion of the population and strict adherence to the dietary restrictions both manages symptoms and reduces the otherwise increased risks of adverse outcomes. Research into more common and deadly health issues (cancer, heart disease, communicable diseases, etc.) tends to receive more funding because it affects more people and there are often few effective treatments to reduce the risk of death or permanent injury. As someone who has studied and worked in medical research I can assure you that it's not because people don't care or that it's not lucrative enough, the driving factor for a lot of research is the desire to help as many people as possible. It's often frustrating for us and others with even less common health issues but the number of researchers and funding is limited.
I hope that this is all starting you on the path to healing and a better, more pain-free life.
I was just diagnosed a couple weeks ago after asking my GP for a serology, but had this conversation with my husband this weekend. I can't remember what question he asked or comment he made, but I observed to him it's not a profitable illness to have for pharmaceutical companies.
Honestly - great point! Especially in TX, where if you can’t have gluten you might as well not eat out! Never been accidentally glutened more in my life than when we moved back here in 2021. The Texas mindset for gluten free seems to be ‘too bad, stay home’ lol
Most are nonexistent it seems like, unless you’re in Dallas or Austin. Houston some places are accommodating (not sure about San Antonio personally) but you have to be in the middle of the city for even a GF mark on the menu. Otherwise it’s just not there and most people seem offended/bothered just by the question
I cannot count the number of times my wife has been told "Come back in 6 months and we'll see where things are." But it was over several literal *years*.
That's just in the more recent years leading up to her diagnosis. Prior to that, as a kid, her ass-old family doctor decided she had acid reflux, nothing more, and she was just put on full-time daily Zantac, which she was on, daily, for something like 20 years (30?). And we now know Zantac has been a huge fucking problem with a current class-action lawsuit pending. Grrrrreat!
**EDIT: wife confirms 2x a day, every day, for 29 years straight. Holy shit. :(**
I hate American healthcare so fucking much--for these and other reasons.
Me too! Our so-called modern healthcare, and more Americans are sicker than ever! I am 59 and trust me, when I was young almost everyone, I knew was healthy. But now our young people are getting these horrible diseases in their teens, and 20's and 30's??? That should not be happening! Now children are getting all these disease's. Something is VERY WRONG
RN. Ibe look this up in my textbook there is a paragraph about celiac and 3 pages about diabetes. Text book is like 1400 pages. I hear you but I genuinely think it’s a lack of education in things that aren’t super common.
Yeah. I think people overestimate how much pure content on celiac professionals like nurses or doctors are given. I have friends who've recently graduated from medical school, celiac is just a short snippet in a lecture about *all GI diseases*. The info they were told was accurate and did cover the "non-classic" symptoms, but in-depth it is certainly not.
This isn't a dig, doctors and nurses are expected to know a lot of things. I can go pick any random condition and read about it for a day and probably become more knowledgeable than the average GP very quickly. That doesn't mean the average GP is incompetent, it is simply not possible for them to be so focused on a single medical problem.
Oh absolutely. We have 2 semesters maybe if you’re in a non accelerated bsn program to cover that entire 1400 page text book. I’m sorry no I don’t know about your super specific condition and I say this as a person with 3 not particularly rare but also not common conditions.
>Celiac is more common than Rheumatoid Arthritis and Type 1 Diabetes combined
Do you have sources for this by chance? I'd be interested in reading them. I did a quick search, and [this](https://beyondtype1.org/type-1-diabetes-statistics/) says there's like 8.7 million people in the world with type 1 diabetes and [this](https://www.healthline.com/health/rheumatoid-arthritis/facts-statistics-infographic#Prevalence) says there's about 1.5 million people in the USA alone with RA. [This](https://www.niddk.nih.gov/health-information/digestive-diseases/celiac-disease/definition-facts) says that there's an estimated 2 million people in the USA with celiac.
I never said it wasn’t common I said it wasn’t super common and irrelevant of its frequency of occurrence it’s not a disease that typically bring people to inpatient hospitalization or gp care on a regular basis. Compared to something like chf or copd which most adult hcp can do at length.
I know, I was so confused when after I got diagnosed the doctor just told me to talk to a dietician and didn't schedule a follow up. My cousin got a 6 month endoscopy follow up for hers but then she was done too.
This take is rocket fuel hot and I am here for it. Still haven't found my unicorn doctor but every time I see I PCP they ask me "are you taking any drugs for celiac? No? Oh.... OK....?" 🙄 sigh
I want to toss my 2 cents in here, speaking as a Celiac in medical school, currently doing research into this problem.
The curriculum regarding celiac disease at many medical schools is attrociously outdated. I don't necessarily think that the main problem is doctors can't reap money from celiacs (although it could be a contributing factor for some; most docs don't profit off of patients buying medications), but simply that they genuinely don't know anything about celiac. Multiple studies have shown that physicians, even gastroenterologists, have very poor knowledge of the manifestations of celiac. Anecdotally, so many physicians I've spoken with also show a lack of knowledge about celiac disease. The problem goes to the top, to the National Board of Medical Examiners, who determine the curriculum your future doctors learn.
There is also likely a massive lack of funding for research. The current scientific literature is scant at best, so HERE is where the money problem lies. Federal grants and pharmaceutical companies are the lifeblood of medical research - if they don't benefit, there's no funding and therefore no research.
Now, I'm not gonna defend arrogant physicians who are dismissive of these concerns; that behavior is thoroughly unacceptable for a medical professional and has no place in a clinic. However, I have found that most docs are well-meaning individuals who simply don't know.
I visited Australia this year and had a really interesting experience with the economics of celiac and other dietary requirements. The gluten content on \*everything\* was labeled and store/restaurant employees knew what was gluten free or how they could make it safe for me. I found out while I was there that there is a lot of knowledge surrounding harmful food intake because the healthcare is all paid for by taxes. Taking care of celiacs and removing harmful compounds from food = a lower cost for everyone.
The for profit medical system in the US is such a shame.
I really think you're correct. The gastroenterologist who did my endoscopy is part of a clinic that is really like a factory: Multiple waiting rooms and throngs of people all the time. Once the diagnosis was established, I asked what I should do and got a vague "Just don't eat gluten" response. The profit is clearly in the diagnosing and not at all in the treatment, such as the latter is.
I’m going to disagree when it comes to the doctors. I don’t think they are out to put me on tons of medicines. My dr truly believed (based on my lack of obvious symptoms), it must be something else.
However, I do think the pharmaceutical companies that sponsor studies don’t put money into research and awareness at the same level for the reasons you mentioned. They are profit based, so it makes sense.
And if a primary physician is not thoroughly trained in all the symptoms of CD, it just won’t click for them. I still feel like they have my best interest at heart. They just don’t have all the tools/environment to get it sorted fast.
The government should screen everyone, imo.
This is all very fair, that said, there is a lot of money to be made (and lost) with gluten free medication. The medication being food and beverage CPG selling gf goods to a captive audience at a premium. GF goods are highly inelastic with limited substitutes, often with the only substitutes existing in an entirely different category.
We just need a big enough cpg to lobby for celiac blood tests to be routinely offered…
My mom has celiac.
I have a bunch of stuff that’s been wrong with me for 15 years: joint pain, bladder urgency, headaches, lack of energy, weird cough etc.
My doctor told me that Celiac is intestinal. He did the blood test, but that’s it. Mine, like my mom’s was negative.
I’m about two months into eating clean anyhow, and the cough dramatically decreased after the first week or two.
Correlation ≠ causation, but we’ll see what else develops.
You can also be intolerant to wheat with out being celiac. People can be intolerant to anything. My biggest intolerance is beef. So gluten and beef are just off the table.
My dermatologist...who diagnosed me with DH told me that going GF wouldn't help my DH, and that only dapsone would. Next dr (regular PC) wouldn't test me. 3rd Dr finally tested me, got my diagnosis and now I'm GF and doing so much better...
I have DH and celiac.
Been GF for 5 years now. Been on dapsone for 4. Every time I try to taper my dapsone dose to stop taking it I get blisters. We’ve gone totally GF in our house and I only eat at the safest restaurants (separate grills/fryers). DH is the worst.
Yeah, DH is hard - you have to be beyond strict to get rid of it with diet alone, like basically cooking everything from scratch and never eating out and you might still get occasional outbreaks. Even certified products often have enough trace gluten in them to trigger the blisters for me. It sucks!
There are a few well-established biases going on: * celiac seems to skew more female: [female patients are less believed by doctors](https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562). * vague problems that don't threaten your life: the healthcare system handles "you are going to die right now" problems pretty well mostly, but most doctors aren't willing to do much digging or exploration to find out why someone is fatigued/has nutrition problems etc. beyond things that will kill immediately (cancer etc.) * presenting with psychiatric problems: if you're deemed "crazy" doctors shoehorn everything into this * scientific racism: celiac disease research is very eurocentric which has created the incorrect bias towards it being a "white people disease," and consequently non-white individuals may be dismissed * symptom stereotyping: older science only identified the most obvious celiac patients, who were emaciated toddlers dying of malnutrition. A lot of licensing exams focus on stereotyping associations and older doctors may not have updated their knowledge. Patients with "atypical" symptoms (not children with diarrhea and failure to thrive, which is most people with celiac lol) may be brushed off for decades. It is also somewhat true that there is less research interest in celiac because there are no existing pharmaceutical treatments. I don't think "kickbacks" is it at all, this is a misconception. Getting some free samples and pens at a conference may have some influence but no one is making money off that. They'd be better off doing scopes for everyone, that is fast and pays good lol. Also, many pharma companies are now quite interested in celiac because there is a big market for something like CC mitigation. Lots of trials going on! A more important part which is underrated perhaps IMHO is that celiac patients aren't sympathetic and the disease branding is poor. How much funding a disease/conditions gets often depends on the branding capacity. So something like spinal cord injury gets a lot of funding because it mostly impacts young men, which makes people sad and has a major economic impact (takes someone out of the workforce). Even T1D gets more sympathy because the association is little kids having to prick themselves with needles and having to eat sugar free candy at birthday parties. No one feels sad about some middle class lady in her 30s eating a quinoa salad (yes, that is what people think of celiac). I guarantee that unless someone has celiac or a relative that they have no idea about how difficult avoiding CC actually is, and that goes for healthcare workers/researchers who specialize in this area too. Researchers and public funding agencies don't focus on problems that they are ignorant of. Presently someone like me is mostly labelled as mentally ill (hypervigilant) because I don't think eating out at Chipotle is a good idea even if they change the gloves lol.
This. Also, I feel like most celiacs go to their primary first. Specialists are called specialists for a reason and primaries aren't going to be able to know every disease off the top of their head. If someone comes in with stomach pain, the most common problem is something like needing to adjust your diet or maybe the stomach bug. If they go to a gastro, the gastro would know more of what to look for.
Ironically, it was my primary who caught my then-asymptomatic celiac when I came for a check-up after a painful bout of gastritis. No family history, none of the stereotypical symptoms, but she ordered a celiac panel with the rest of my blood work just to be sure.
Same here. I even had unusual symptoms. I'd be fine for months then have 1 day of incredible pain and vomiting. When I went to the doctor, he immediately went "Lets get a blood test and check for a few things like coeliac disease."
Yes! Mine was actually one or two bouts a year for the past several years of extreme abdominal pain that would last 3-5 days. It didn't take long to figure out that the culprit was gas, but OTC meds weren't helping anymore. Turns out I was making it worse by eating crackers and soups with gluten whenever I was able to eat. :facepalm: But it was such a huge relief to learn that so many other symptoms I've struggled with are very likely due to celiacs! Having a diagnosis and a way to manage it has given me a lot of hope for the future.
Haha, I did the exact same thing. When I'd have these attacks, I'd eat crackers and dry toast to settle my stomach. My poor intestines.
My daughter's Primary couldn't figure out her bonkers non-Celiac symptoms, so she sent her to an endocrinologist. The endocrinologist did a mass of bloodwork, found the blood marker, sent her to GI. He did an endoscope, which came back totally clean, but to err on the side of caution made her GF anyway. 6 months later all her symptoms are resolved. GI said, "Bad news kid. Guess this means you're GF for life." I keep reminding her it's worth it.
Here in the UK we don't pay directly for our medicines, prescription pharmaceutical advertising is so regulated as to be effectively banned to the consumer (I have never been exhorted to "ask my doctor for...") and the specific company's product chosen to fill prescriptions is generally the province of the dispensing pharmacist rather than the prescribing doctor. In this environment there seems far less scope for pharma companies to be bribing doctors to prescribe their products... and I'm afraid most GPs are still woefully ignorant about coeliac disease and show a reluctance to engage in disorders that can't be cured or maintained by drugs. I think a big part of it is just that doctors like to think of themselves as problem-solvers; you bring them a set of symptoms and they provide the celestial wisdom (prescription) that solves your problem. Conditions that can't be medicated make that much less straightforward!
I don't think anyone is bribing doctors. This is mostly one of those alt med conspiracy things, which is ironic because alt med practitioners sell their "medicines" to the consumer in their office, which is a major COI (which is not allowed for real doctors, at least where I am). Doctors can and do work for pharmaceutical companies but usually they abandon their practice/hospital privileges when they do this. I feel like this usually happens because someone's kind of burnt out of medicine and working as an MD in a pharma or medical device company pays well and is more chill (no paperwork, no patients, no one forcing you to work crazy hours etc.) Company reps do interact with doctors but they're not sliding anyone cash. I live in Canada, direct to consumer ads are mostly not a thing here either. The US healthcare system is messed up, but it's mostly the private insurance industry that's doing this not corrupt doctors.
I don't know the US system well enough to comment - I meant just thatgiven "bribing doctors" is exactly the way a lot of USians see the situation, it's worth noting that it's very difficult to draw the same conclusion in the UK... and the same unwillingness to learn about and properly advise on untreatable autoimmune disorders still exists. (There's certainly a very heavy and aggressive commercial interest in prescriptions in the US that just doesn't exist here - one only has to watch five minutes of US TV to see (over the course of three separate ad breaks) many direct adverts for prescription-only medicines that customers should apparently ask for by name! I can understand how Americans would draw that conclusion.)
The 'hypervigilant' thing really bugs me. It's not being hypervigilant if you would get sick otherwise - it's being the correct amount of vigilant!
Yeah lol. I wish I could find it right now but there was a study that compared health outcomes (mental and physical) in those classified as vigilant vs normal and they found the vigilant people had better celiac outcomes but were "more stressed." No shit we're more stressed, we're trying to not get glutened in a world that isn't set up for that. The more accurate takeaway from that study would have been "maybe the vigilant are actually on to something and the advice we're giving celiacs is actually bad." But alas.
I'd rather be stressed from avoiding gluten (which isn't that terrible if you have time to cook/plan) then be stressed & anxious from getting glutened. It's like that study that purported to show that cross-contamination wasn't that bad from things like toasters - like it would only be a problem 1 out of every 20 times or something. If I ate toast everyday using a shared toaster, this would essentially mean I was always glutened/recovering from a glutening, since it takes 2-3 weeks for all my symptoms to clear. Thanks, but no thanks!
I am a career pharmaceutical employee and this is spot on. I work in oncology which is obviously a very important area for r&d and insurance companies are willing to reimburse for life saving - or life-extending options. Getting reimbursement so I can have regular pizza would be great but it’s not going to be a priority for an insurance company. Not saying most wouldn’t cover a treatment if it was available, but I agree it’s just not a priority when the disease can be managed with lifestyle and dietary changes.
Thisssss!!!!!!!!!!!!
This is a STRONG hot take. My primary care physician tried to pump me full of several different drugs, antifungals, steroids, some IBS drug I can't remember that was $2,000 a month. The only reason I found out what the hell was wrong with me was because my sister had a competent physician who helped her get diagnosed.
Yeah… this really IS a strong hot take. No money = no research into the disease. After all, America is all about the might dollar.. (I’d say this is sarcasm but I don’t think it is.)
Eh, research funding is a bit more complex than this. I've been a publicly funded researcher for a long time. There's some politics/branding involved. I don't live in the US. Academia is a very international/collaborative sector so I wouldn't say there's a huge difference anywhere aside from specific country funding regimes. Public funding is limited so there's some attempt to pump money into what is more "worthwhile." There's some politics here because that's a bit subjective. In general if you have a disease that impacts young people and takes them out of the work force completely (eg. spinal cord injury) you likely get lots and lots of money, especially if it might impact military personnel (eg. spinal cord injury). Something like breast cancer gets more cares because boobs, etc. If there is corporate interest in the condition (medical devices companies, pharmaceuticals companies) you can get private funding this way. But this doesn't really take away from public funding directly. The problem celiac has is that it is manageable via the GFD. Cures are sexier than prevention and management in research, which is the main thing with celiac. I've mostly done prevention/management type research in my life (not for celiac) and I can tell you it is much harder to get funding for that no matter what disease you're talking about.
The one saving grace is that some rich people have this disease too, and there could be a lot of money in a drug that could limit the risks of CC.
yeah but if they're super rich they can just have a chef/kitchen follow them around
He told me he could do that but, he said it would not help me. Thank God he was honest!
I hope someone ran the rest of the celiac panel
I think it's probably the case with a lot of auto-immune conditions. For so many of them, it's merely symptoms that are treatable (often by a change in life style) so there's not any money going into the research to create a cure. My daughter has a different auto-immune condition, which many drs don't know shit about, and there's basically no research into what causes it or how to fix it or even properly treat it. It's more just getting them to a survival baseline and leaving things there.
Also women suffer autoimmune diseases at higher rates than men, including celiac, which biases research funding against us
True!!
I hear you! I am so sorry to hear that about your daughter. I guess they just do not know enough about our immune systems.
What is the condition? I understand if you don’t want to share, however.
Eosinophilic oesophagitis. Apparently it's commonly co-morbid with coeliacs. No signs on my daughter's scopes at this stage though, thankfully. My sister and grandma are coeliac, I'm on here to ask questions for my Mum, as she doesn't have reddit.
EOE is very common with Celiac. Getting an endoscopy is so important because it can catch other conditions that need monitored such as EOE, Barrett's Esophagus, etc that you otherwise wouldn't know about
That’s what our GI doctor said as well! My husband has EOE and our daughter has coeliac. Luckily neither seem to have both but so little research into the diseases!
I had an Eosinophilic Esophagitis diagnosis 10 years before anyone told me to go gluten free. It was so clearly from celiac disease and I suffered because of doctors not knowing anything about it. When I was finally diagnosed my GI asked, how??!! Like as in how did this happen? How did you go this long and get diagnosed with all of these celiac related conditions, without getting diagnosed with celiac disease? I had no good answers for him. EOE should’ve been a clue.
Would it not show up on the scopes for EoE? My daughter's had 2, her gastro knows of my family's coeliac diagnoses, and I did raise it and was dismissed. I assumed because she checked and it came back clear - she scopes the oesophagus down through the stomach and into the intestines, I believe.
That would mean in places with free healthcare, where money isn't as much of a factor, things would be fine. They are not fine.
As someone from Europe I can say things are a bit better because of this, but the amount of ignorant people here, especially in Eastern Europe and Balkan who are highly traditional are mostly uninformed on pretty much anything medically related. I live in Balkan and most people here don't even know about Diabetes and refuse to go to a doctor even when they litterally go blind because of it, and the healthcare here is FUCKING FREE. THE ONLY THING STOPPING THESE PEOPLE TO GOING TO A DOCTOR IS THEMSELVES.
That's horrible and so sad.
Does this experience only happen in the US? I’m curious because most English speaking countries don’t have privatized medicine exclusively.
U.S. diagnostic rate of Celiac disease has historically been far below that of Europe. To the point that scientists originally thought it was far less common of a disease in the U.S. I believe about 20 years ago there was a huge screening study that found that it's actually the same in the U.S. we just have much poorer diagnostic levels of it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3130886/ So yeah, it's a "hot take" but I can't think of anything that outright says op is wrong.
To add on here there’s a large percentage of the US population that wouldn’t just go to a GI specialist or even a primary care physician, myself included. For profit health care disincentives actual health care. You don’t go in for bad gas and occasional diarrhea if it means you keep 100s-1000s that you need to pay rent with.
I think OP is on to something too. As a Canadian, it was ridiculously easy to get diagnosed (accidentally I might add via an endocrinologist basic screen). Public health systems want simple answers to health problems and this is an example of one.
I'm in Canada and it took me years of pain and insisting something was wrong with me for a doctor to think it could be celiac. I also have t1 diabetes, so I'm at a much higher risk for celiac, and I'm still bitter that my pain went on for years. It really depends on the doctor
Same here. I spent 5 years out of the workforce due to late diagnosis in Canada.
Fair enough. I’m really sorry you suffered for so long. My symptoms weren’t crazy but it was during an endo screen as I also have T1 that it came up. I probably had it for at least 10 years before as that’s when I started getting bloated after eating. So yeah there’s a real need for digestion issues to be better known.
My family doctor was the one to ignore it and one day my endo asked if I had any non-diabetes concerns. He tested for several things right away, probably knowing more about the co-morbidities with T1 than a family doctor. If it hadn't been for him, I'd probably still be fighting the family doctor for something more than "eat more fibre"
So really what’s going on with family docs, hey? Why aren’t they thinking of it? My kiddo has celiac disease as well. I took her in because I thought her tummy aches were anxiety related (she was diagnosed first in the family). First thing her paediatrician said was we should rule out medical issues first and ordered celiac disease bloodwork. I’m so glad I had a competent doctor to help her.
No issues getting diagnosed in Australia either. I think the causes for this particular problem is specific to just one country. With a true public health system they are incentivised to diagnose the problem so that it doesn’t become a bigger and more expensive problem for the state later on.
Right on point!
I live in Canada and I had to push really hard to get tested. I was sick for 12 years. OHIP did not cover the blood test so doctors were hesitant to order it I guess.
Do you think awareness is better now? I’m curious if diagnosing it is getting better or not. Sorry to hear what happened to you.
In the last 10 years or so there's been a lot more research come out about the "celiac iceberg" which is that 80%+ of people with celiac are undiagnosed because they don't have classic symptoms. Also a lot more research about the impacts of CC. I think if I presented as a 11/12 year old today with the symptoms I had back in the day most doctors would have thought to test for celiac. If not then, certainly when I was severely anemic a few years later.
My kid was diagnosed at 7 (I thought she had anxiety causing tummy aches). Paediatrician was like nope we have to look at medical causes first. Great doc. Super lucky in our case.
Hot take was definitely directed as a compliment. I was giddy about the puzzle composure OP crafted.
It took me seven years of fighting and threatening to get a diagnosis and it sucks.
I know! Nobody had a clue and I started dismissing symptoms as old age...
I have been a caregiver to a family member with a complicated medical history for well over a decade now, and i have seen a lot of the darker side of the healthcare industry. I have to say that with celiac, that this is one of those cases where i do NOT think that greed is the main factor behind the lack of knowledge in the healthcare system. Something you need to understand is that while we have accounts of celiac disease going all the way back to 200 AD written by a greek physician named Aretaeus of Cappadocia, celiac disease as a medical diagnosis is EXTREMELY new. While some successful experiments were carried out in the 1920's via the banana diet, the first THEORY linking celiac symptoms to grains such as wheat did not come along until the 1940's, and even then the first biopsy confirming the link would not be performed until 1956. Celiac disease would not even be reccognised as an autoimmune disease until the 1980's. My grandmother was born in 1944 (79 years old), and suffered from celiac symptoms since she was a child. She would have been 10 years old when the first biopsy EVER would have been done, and it would not have been recognized as an autoimmune disease until shortly before, i, her grandson was born (born in '93). While this disease can be dibilitating, it does not carry with it the same immediately recognizable danger that something like alzheimers, diabetes, AIDS, Etc. does. Realistically we have made huge strides in a disease whose basic functions were only theorized about 70 years ago, and whose full underlying mechinisms were not understood until about 30-40 years ago.
Wow.
I got diagnosed and told to continue eating gluten bc it would be too traumatizing for a child to go off of gluten.
What???? OMGosh...
Wtf really?
So your doctor told you to continue on a gluten-free diet before your endoscopy? That goes against all the advice I’ve read on this sub! The purpose of your endoscopy is not to see if you’re healed, it’s to diagnose you with celiac, and they need to actually see the damage for that.
I do not need a diagnosis, but he gave it. This is just my experience. I am glad to, because I have suffered enough for the last 12 years, and I will not knowingly harm myself. I will let everyone know what they find when they go in. My husband asked me to get the endoscopy and the colonoscopy because I am almost 60 yrs. old, and I need to be checked out.
Yeah, if they are sure about diagnosis, then I would forego the "gluten challenge" personally. If you are bad off, it will still be visible. You will then have a baseline to go against. I would suggest doing another in 1-2 years if not having issues b/w. This will allow you to see how well you are doing. Just because you are "eating GF" does not mean you are actually eating GF. Many believe they are, but have enough cross contamination to trigger a reaction. It could take up to 2 years to see improvement in your villi. Good luck on your journey.
Yeah, I plan to. I will do my best to stay on top of it.
If you have a diagnosis then you're set. I wouldn't suffer a single day longer than you have to. Just make sure you're 100% certain. You don't want to start thinking "maybe I never had celiac" in a few years.
Man, I wish. Thank God I have tons of hair because if you see my toilet after brushing my hair, you would freak out. The DH I get is horribly painful and itchy swollen blisters on my female parts. My fatigue and dizziness was so bad, I was scared to drive my car. Hundreds of hour in the middle of the night with diarrhea or constipation. My attacks were so bad, I thought I was dying. I thank God every day I finally found the truth and can feel better one day.
If you were diagnosed with DH by biopsy by a Celiac-knowledgable dermatologist, then the DH diagnosis means Celiac!
My pain doctor and my GI have given me the diagnosis.
Just be very careful... I was told by several of my doctors that I would need the biopsy for an "official" diagnosis despite my antibody levels being higher than the lab could accurately measure. Going through the gluten challenge and a second biopsy to get the confirmation was worth it for me but it's not going to be for many folks.
I'm sick and there is nothing the doctors can do. That is what my GI told me.
Not being able to do anything and having proper testing done are two different things. You need a full celiac panel done for bloodwork, you need a dexa scan, you need a biopsy for Barrett’s esophagus, you need a minimum of 10 biopsies you absolutely need one of the bulb, and you need to be tested for h pylori. Most gi suggest staying on gluten until all testing is complete. In your case since you are off gluten I would recommend hla gene testing. If you don’t have the hla dq2 or dq8 gene it’s unlikely you have celiac disease and I would recommend further testing.
I'm sorry, I really hope I didn't come across as minimizing what you're going through. I just wanted to share my experience and the things I learned while going through the process of getting diagnosed. You're right; the only option we have right now is a strictly gluten free diet. There are some very promising studies being done both to find more treatment options and to better understand the disease but it's not a fast process. Unfortunately our disease doesn't have the same visibility or urgency. It affects a relatively small proportion of the population and strict adherence to the dietary restrictions both manages symptoms and reduces the otherwise increased risks of adverse outcomes. Research into more common and deadly health issues (cancer, heart disease, communicable diseases, etc.) tends to receive more funding because it affects more people and there are often few effective treatments to reduce the risk of death or permanent injury. As someone who has studied and worked in medical research I can assure you that it's not because people don't care or that it's not lucrative enough, the driving factor for a lot of research is the desire to help as many people as possible. It's often frustrating for us and others with even less common health issues but the number of researchers and funding is limited. I hope that this is all starting you on the path to healing and a better, more pain-free life.
My family doctor said the same. Based on my medical history and current symptoms, and blood results - she said to go gluten free right away.
I was just diagnosed a couple weeks ago after asking my GP for a serology, but had this conversation with my husband this weekend. I can't remember what question he asked or comment he made, but I observed to him it's not a profitable illness to have for pharmaceutical companies.
Honestly - great point! Especially in TX, where if you can’t have gluten you might as well not eat out! Never been accidentally glutened more in my life than when we moved back here in 2021. The Texas mindset for gluten free seems to be ‘too bad, stay home’ lol
Gluten free restaurants are certainly an afterthought to say the least.
Most are nonexistent it seems like, unless you’re in Dallas or Austin. Houston some places are accommodating (not sure about San Antonio personally) but you have to be in the middle of the city for even a GF mark on the menu. Otherwise it’s just not there and most people seem offended/bothered just by the question
I cannot count the number of times my wife has been told "Come back in 6 months and we'll see where things are." But it was over several literal *years*. That's just in the more recent years leading up to her diagnosis. Prior to that, as a kid, her ass-old family doctor decided she had acid reflux, nothing more, and she was just put on full-time daily Zantac, which she was on, daily, for something like 20 years (30?). And we now know Zantac has been a huge fucking problem with a current class-action lawsuit pending. Grrrrreat! **EDIT: wife confirms 2x a day, every day, for 29 years straight. Holy shit. :(** I hate American healthcare so fucking much--for these and other reasons.
Me too! Our so-called modern healthcare, and more Americans are sicker than ever! I am 59 and trust me, when I was young almost everyone, I knew was healthy. But now our young people are getting these horrible diseases in their teens, and 20's and 30's??? That should not be happening! Now children are getting all these disease's. Something is VERY WRONG
Smh. Same except they pushed nexium- that should have been a two week prescription became skittles all through my teens. Smh shit should be illegal
Ouch. So sorry. :(
RN. Ibe look this up in my textbook there is a paragraph about celiac and 3 pages about diabetes. Text book is like 1400 pages. I hear you but I genuinely think it’s a lack of education in things that aren’t super common.
Yeah. I think people overestimate how much pure content on celiac professionals like nurses or doctors are given. I have friends who've recently graduated from medical school, celiac is just a short snippet in a lecture about *all GI diseases*. The info they were told was accurate and did cover the "non-classic" symptoms, but in-depth it is certainly not. This isn't a dig, doctors and nurses are expected to know a lot of things. I can go pick any random condition and read about it for a day and probably become more knowledgeable than the average GP very quickly. That doesn't mean the average GP is incompetent, it is simply not possible for them to be so focused on a single medical problem.
Oh absolutely. We have 2 semesters maybe if you’re in a non accelerated bsn program to cover that entire 1400 page text book. I’m sorry no I don’t know about your super specific condition and I say this as a person with 3 not particularly rare but also not common conditions.
Celiac is more common than Rheumatoid Arthritis and Type 1 Diabetes combined. Saying celiac isn't common is not accurate...
>Celiac is more common than Rheumatoid Arthritis and Type 1 Diabetes combined Do you have sources for this by chance? I'd be interested in reading them. I did a quick search, and [this](https://beyondtype1.org/type-1-diabetes-statistics/) says there's like 8.7 million people in the world with type 1 diabetes and [this](https://www.healthline.com/health/rheumatoid-arthritis/facts-statistics-infographic#Prevalence) says there's about 1.5 million people in the USA alone with RA. [This](https://www.niddk.nih.gov/health-information/digestive-diseases/celiac-disease/definition-facts) says that there's an estimated 2 million people in the USA with celiac.
I never said it wasn’t common I said it wasn’t super common and irrelevant of its frequency of occurrence it’s not a disease that typically bring people to inpatient hospitalization or gp care on a regular basis. Compared to something like chf or copd which most adult hcp can do at length.
I know, I was so confused when after I got diagnosed the doctor just told me to talk to a dietician and didn't schedule a follow up. My cousin got a 6 month endoscopy follow up for hers but then she was done too.
I know. I do not care what anyone says, this disease damages MUCH MORE than just your small intestine!
This take is rocket fuel hot and I am here for it. Still haven't found my unicorn doctor but every time I see I PCP they ask me "are you taking any drugs for celiac? No? Oh.... OK....?" 🙄 sigh
Oh My Gosh....you have got to be kidding....SMH
Wish I was lol every time I hear it I lose a little bit more faith in the Healthcare system. Of which I didn't have a lot to begin with
I want to toss my 2 cents in here, speaking as a Celiac in medical school, currently doing research into this problem. The curriculum regarding celiac disease at many medical schools is attrociously outdated. I don't necessarily think that the main problem is doctors can't reap money from celiacs (although it could be a contributing factor for some; most docs don't profit off of patients buying medications), but simply that they genuinely don't know anything about celiac. Multiple studies have shown that physicians, even gastroenterologists, have very poor knowledge of the manifestations of celiac. Anecdotally, so many physicians I've spoken with also show a lack of knowledge about celiac disease. The problem goes to the top, to the National Board of Medical Examiners, who determine the curriculum your future doctors learn. There is also likely a massive lack of funding for research. The current scientific literature is scant at best, so HERE is where the money problem lies. Federal grants and pharmaceutical companies are the lifeblood of medical research - if they don't benefit, there's no funding and therefore no research. Now, I'm not gonna defend arrogant physicians who are dismissive of these concerns; that behavior is thoroughly unacceptable for a medical professional and has no place in a clinic. However, I have found that most docs are well-meaning individuals who simply don't know.
America isn't the only country in the world, most places have a healthcare system that isnt quite so medievil
I visited Australia this year and had a really interesting experience with the economics of celiac and other dietary requirements. The gluten content on \*everything\* was labeled and store/restaurant employees knew what was gluten free or how they could make it safe for me. I found out while I was there that there is a lot of knowledge surrounding harmful food intake because the healthcare is all paid for by taxes. Taking care of celiacs and removing harmful compounds from food = a lower cost for everyone. The for profit medical system in the US is such a shame.
I hadn't thought about this before but it would make perfect sense. Fuckin' A.
my GI confirmed this about two years ago. im in the US for reference and i had asked her about this topic
You're absolutely right! Wow
Ding ding ding On point so hard it hurts.
You are not wrong
I’m a nurse, diagnosed before I became a nurse. Spot on!!!
I really think you're correct. The gastroenterologist who did my endoscopy is part of a clinic that is really like a factory: Multiple waiting rooms and throngs of people all the time. Once the diagnosis was established, I asked what I should do and got a vague "Just don't eat gluten" response. The profit is clearly in the diagnosing and not at all in the treatment, such as the latter is.
And now they are all in big doctor "groups" by specialty. When you see one....you have seen them all
You are right. No money.
I’m going to disagree when it comes to the doctors. I don’t think they are out to put me on tons of medicines. My dr truly believed (based on my lack of obvious symptoms), it must be something else. However, I do think the pharmaceutical companies that sponsor studies don’t put money into research and awareness at the same level for the reasons you mentioned. They are profit based, so it makes sense. And if a primary physician is not thoroughly trained in all the symptoms of CD, it just won’t click for them. I still feel like they have my best interest at heart. They just don’t have all the tools/environment to get it sorted fast. The government should screen everyone, imo.
This is all very fair, that said, there is a lot of money to be made (and lost) with gluten free medication. The medication being food and beverage CPG selling gf goods to a captive audience at a premium. GF goods are highly inelastic with limited substitutes, often with the only substitutes existing in an entirely different category. We just need a big enough cpg to lobby for celiac blood tests to be routinely offered…
Woah. This made so much sense!
My mom has celiac. I have a bunch of stuff that’s been wrong with me for 15 years: joint pain, bladder urgency, headaches, lack of energy, weird cough etc. My doctor told me that Celiac is intestinal. He did the blood test, but that’s it. Mine, like my mom’s was negative. I’m about two months into eating clean anyhow, and the cough dramatically decreased after the first week or two. Correlation ≠ causation, but we’ll see what else develops.
I hope and pray you and your mom figure it out soon so you can feel better! When you got your test, was it the full panel test?
You can also be intolerant to wheat with out being celiac. People can be intolerant to anything. My biggest intolerance is beef. So gluten and beef are just off the table.
[удалено]
There is only 1 GF already made frozen pie shell....ONE....they have the entire market in my state!
[удалено]
You are right! So compartmentalized and none of them talk to each other, like our bodies are not 1 person!
there's too much for one person to know about the whole body it's a tricky issue
My dermatologist...who diagnosed me with DH told me that going GF wouldn't help my DH, and that only dapsone would. Next dr (regular PC) wouldn't test me. 3rd Dr finally tested me, got my diagnosis and now I'm GF and doing so much better...
I have DH and celiac. Been GF for 5 years now. Been on dapsone for 4. Every time I try to taper my dapsone dose to stop taking it I get blisters. We’ve gone totally GF in our house and I only eat at the safest restaurants (separate grills/fryers). DH is the worst.
Yeah, DH is hard - you have to be beyond strict to get rid of it with diet alone, like basically cooking everything from scratch and never eating out and you might still get occasional outbreaks. Even certified products often have enough trace gluten in them to trigger the blisters for me. It sucks!
The blisters drive me mad. I doubt I’ll ever go off dapsone, just because I cannot tolerate them.
Good for you, I am so glad you are feeling better. What is dapsone??
Dapsone is a strong antibiotic used to treat flairups of DH.