The gluten challenge!

Question

I don’t mean to offend anyone or sound any type of way – I am just honestly puzzled by some of the posts I’ve been seeing and would like some insight.

I see people posting about doing “the gluten challenge” so they can have their endoscopy done and tested for Celiac. My confusion is here, why if you have been eating gluten free and seeing positive results, why would you eat gluten and put yourself thru hell for a diagnosis?

So I’m just curious as to why so many would put themselves through pain and distress for a diagnosis? Is there something I’m missing? Should I be considering doing this? My doctors opinion is just one of many, I’m not saying our decision for me to remain undiagnosed is the right one, it’s just so worth it for me to be able to continue living my life to not go thru the process of the diagnosis. So that’s why I’m genuinely curious why so many of you do commit to the challenge and getting the diagnosis when you know gluten is harming you in some way because you’ve already cut it out and feel better.

My doctor wanted me to do a gluten challenge but after reviewing everything with me she decided it would do more harm than good because while I remain undiagnosed because I won’t be doing the challenge, the improvements of my general well being after going gluten free were not worth sacrificing for a diagnosis. I am not even exaggerating when I say I get every single symptom that is possible with Celiacs, I would bet I still have symptoms I haven’t identified (I’ve got like 25 individual symptoms written down). For me, the impact it would have on my life to do a gluten challenge would be debilitating, I wouldn’t be able to work for the entire challenge because of my symptoms.

So I’m just wondering, why choose this route for diagnosis?

in progress 0
Hannah 3 years 50 Answers 934 views 0

Answers ( 50 )

  1. I was just wondering this today as I’m seeing a gastroenterologist on the 9th and I’ve tried to be gluten free for about a year.

  2. So family members will take me serious because a few of them have symptoms but are ignoring them as indigestion. So their doctors take them serious, if they decide to take my diagnosis seriously and see a doctor. So the pharmacist will take me serious when requesting gluten free medication. So my health insurance will take me serious about future testing and possible medications that I need.

  3. I just asked this not too long ago. I’m already GF, so I don’t see the point in be gluten tortured for a diagnosis since I’m already doing the treatment for said diagnosis. But that’s just me.

  4. I’m 1 week in incorporating gluten back in my diet after 3 years. I’ve read to eat gluten for 4-6 weeks for it to show up on a blood test. Both my functional med doc and my allergy nurse highly suggest I get tested. I just found out recently I’m allergic to wheat (and a handful of other foods). I am so yucky feeling that I will not be continuing on eating this way. I’ll go ahead and get my labs done next week. My joints ache, I’m full of inflammation, I feel blah. I guess I wanted to know if I have celiac, because then I know I’d be serious about it and stay away from it. But what I realized this week, is my wheat allergy is something I need to be serious with and go back to eating the cleaner way I was! I felt SO much better last week!!!

  5. Because with my diagnosis I qualify for FMLA so I won’t lose my job for calling in when accidentally glutened 🤷🏼‍♀️

  6. Following

  7. I thought you could get diagnosed with just blood work alone?

  8. For myself I am thinking of it to see if I need to be 100% gf. I am about 90% . I dont freak out over spices and speghetti sauce but wondering if I should be??? Not sure if need to eat gluten for endoscopy? But I also prdered 23 and me to see if have genes for celiac

  9. Trader Joe’s is your friend. \nI found it was necessary to really learn what has gluten and what didn’t. People & businesses try to make more off of us but it is possible to avoid gluten and not go bankrupt.

  10. For tax purposes. If you are officially diagnosed, then anything you have to buy in the name of the disease is a deduction

  11. I don’t know about you, but I’d like to know if I have an auto immune disease.

  12. I was diagnosed about 30 years ago when there wasn’t a blood test. You ate a stick of butter every day for 5 days, collected all solid waste the last 3 days and they analysed it to see how much fat your body didn’t absorb. I had an endoscopy and thought about seeing if the results are anywhere that I can get a copy, but not sure that would suffice as an official diagnosed. I cannot eat gluten for 3 weeks that I have been told I would have to eat it for the blood test and endoscopy. Some day we will have a test you can take whether or not you eat gluten. I want an official diagnosis by today’s standards, but I cannot do it. I highly recommend to people who think they have celiac to not go gluten free until after the testing. Unfortunately, some doctor’s don’t even know that .

  13. This is exactly where I am at. I am personally undiagnosed but eating gluten to test again after being gluten free does not seem worth it to me either.

  14. Insurance, with diagnoses my insurance covered a celiac specialist dietician. Having the title helps with family leave act for work. It will help my children and grandchildren for future health issues. It teaches doctors to look for differences in the disease. I was not symptomatic. My first reaction was not bowels. That’s my reasons, hope it helps.

  15. 1. Family history for my kids (my mom & uncle have it)\n2. If you are celiac, you have to be 100% gluten but if you are intolerant and eat gluten or get accidentally glutened, you know it’s not damaging your GI tract.

  16. I can see both sides. I’m 49 years old and I’ve had just about every symptom there is since I was a child. I finally went Paleo a few years ago with amazing results – all of the mystery ailments from skin problems to digestive issues to fatigue and migraines and yeast infections and… (long list) cleared up as a result of going gluten free. 6 months later went back to eating “normal” (if normal is eating fast food several times a week and lots of processed wheat based foods) then got ridiculously sick (omg wanting to die sick) as a result a few months later. Then went gluten free again to maybe get relief. At that point (4 months again GF) doctor decides my assorted symptoms and history add up to Celiac Disease. (Funnily enough 5 years earlier said I was too fat to have CD and dismissed it entirely) … so the question was… do I go back on gluten for a few weeks or months (and get sick again) to do a test – I’m in Canada so could be longer than a couple of months to get an appointment – or do I stay GF because I know I have relief and assume I have CD? I went with option B – I assume I have CD (I have literally had 90% or more of the symptoms since I was a kid), live as if I have CD and just get on with life or put myself (and my family and my coworkers) through possibly months of my being sick just to get someone to rubber stamp what I already know.

  17. Why do you have to have a diagnosis. People rely on doctors just listen to your body!modern medicine is not always correct in every case! If your body is rejecting the food even if they said that you weren’t celiac or sensitive would you still eat it??

  18. My doctor wants to make sure it’s celiac and not another problem to make sure she is giving the right treatment.

  19. Well, they’re working on developing tests where the challenge would be super brief or unnecessary – so waiting may be helpful. But the answer to why people do resume gluten for testing is that knowing for certain that it’s an autoimmune condition can be very helpful for the rest of your life. Ruling it out is also good, even if you have to continue the GF diet after tests!

  20. can’t speak for myself as I agree with you. I chose not to do it, my blood test was positive, i have several close family members with it so why put my body through more trauma. However as a medical professional I can understand that some people need an accurate diagnosis if they require things to be covered by insurance, or if they want to claim medical expenses (increased grocery costs) etc. Also when discussing children sometimes schools need medical forms in order to provide safe lunches, snacks and such. Personally I have not run into this the schools have been good with my son but i have heard horror stories from other parents. 🙂

  21. Celiac is hereditary. I wanted a diagnosis for my kids

  22. I have the same issue. \nLike I really wanna get diagnosed so I 100% know what’s wrong (not sure if I have celiac disease or just an allergie) but I don’t see myself stuck in bed vomiting every half hour for a month… I don’t even think I can, considering last time I got into an accident I wasn’t able to get out of bed or have any food not even a glass of water for three days…. \nis there any other way to get diagnosed without going through this? Anyone knows?

  23. Is that the doctor or the doctor who performed the endoscopy? After the surgery, the doctor advised us to start GF immediately till the results as it it appeared to be positive.

  24. My doctor said I didn’t have to eat gluten. She said she could see an obvious difference and when I did blood work my antibodies were still present after going GF. Something along those lines.

    0

    Idk, I haven’t been diagnosed with celiac but I was diagnosed with IBS after going through an elimination diet and when I added wheat back in not only did my face break out with the first bite I felt like I’d eaten a bowling ball, I don’t need any more evidence, celiac, intolerant what ever that’s proof enough that I can’t have the stuff.

  25. I wanted a diagnosis so it can be on file with my school for disability services, also so my dr can write me a letter for bringing my own food to specific places like flying on a plane. Documentation is key!

  26. In the UK, for example, you get gluten free food on prescriptions if you have a diagnosis. In the US where you have to pay for medical tests and get no benefit, I can understand if you rather want to avoid the gluten challenge, as it ducks. But if you need a disease on a medical record to get food on prescription and all benefits and future tests. I really believe it depends on where you live abd what your circumstances are.

  27. I was advised to get officially tested, but honestly I never have, I know I am extremely sensitive to gluten. I break out in a rash and I get very bloated and sick, that is enough evidence for me. I personally didn’t feel the need to get an official test done, but that’s because I was just feeling so much better after being sick for so long I didn’t feel it was necessary. To each their own I suppose though

  28. I have a blood test result for gluten allergy that satisfies any medical billing / insurance concerns, so I didn’t do the intestinal scope. It wasn’t worth it to me to go back on gluten and get sick again

  29. I was lucky, I got DH- the gluten rash, so the doctor stated I have celiac. I have a letter to carry with me.

  30. My doctor advised me not to get tested. He knew it would just put me through pain and suffering. He asked me what I would do differently if it came back negatively, knowing how sick it makes me regardless. I said nothing. He said, “then why bother?”

  31. I read that the biopsy is only 30% sensitive. I find it odd that a test with such low sensitivity is required for a diagnosis. I think if you have genes and + blood tests, it should be enough…

  32. I chose to go gf and when I did have an endoscopy it didn’t show anything so I don’t have an official diagnosis but that’s ok for me. I know it makes me really ill, I don’t need it to be confirmed, I’m strictly gf and have been for almost 2 years now and I’m good with that.
    If I ever have a couple months to just lie in bed and do nothing except eat gluten then fine, I’ll do it, but realistically that will never happen!

  33. I’ve asked myself this and stayed up many nights like tonight contemplating this. I’m 42 years old and have been sick all my life.
    I’ve unsuccessfully had attempted to do the scope twice (1997 and 2005) and the little bit they did see they weren’t able to find anything. The prep made me sicker than I was before I did tests ? I’m truly traumatized from it.
    I did pay out of pocket for a DNA test that shows I have 1 of the 2 variants they test for. The odds of having Celiac is 30% if you have this gene.
    I’m hoping the medical field finds a way to be tested without having to consume gluten and with a scope. I feel these are medieval toucher treatments ?
    My doctor says I’m clearly gluten sensitive and there’s no point to doing another scope test as I’m currently gluten free for over a year.
    I don’t know what to do? There’s some great pionts here as to why I should but I’m not well and won’t sacrifice the little improvement I have had to make myself sicker again. It almost killed me before and I’m sure it would kill me now.
    I do appreciate you asking and the feedback from everyone on the pros and cons.

  34. I was a month gluten free when I got my testing done. And dr still diagnosed me.

  35. I agree with your choice to remain “undiagnosed” by western medicine standards. 💪🏼✊🏼

  36. No one in my family has it but I was diagnosed last year with it so I went gluten free for 4 to 6 months and slowly went back to gluten and wad fine until this last month, so I wonder if they were right or if it’s something else

  37. I was told by one doctor I had to eat it.. more than once. I said goodbye

  38. It may convince my family that they need to reconsider their diets. I am debating whether or not to find a new GP and work towards testing eventually. My father had 2 heart attacks last year, his mother, father, brother, sister, aunt, and nephew (only 28 years old at diagnosis!) all had colon cancer. He and his other brother also have had polyps, diverticulitis and other colon issues as well. My dad has lived his whole life with chronic constipation so it is very likely.

  39. In a way….I had been so sick I couldn’t eat. When I got to the doctor’s office I had been 11 days without wheat. She tested me right then and there not sure that it would work but it was positive. I never returned to eating gluten and received the endoscope 4 weeks later and it too was positive. If I had had to go back to eating gluten to test I never would have had the tests.
    Also every time you return to eating gluten you run the risk of developing refractory celiac where the elimination of gluten doesn’t work any more. No thank you! I wouldn’t risk it and my doctor didn’t want to risk it either.

  40. I’m glad I did it, yes it caused pain and I was told I had celiacs which we pretty much already knew, but I am also finding out tomorrow about another problem that we wouldn’t have found out if not for wanting to be diagnosed! Currently in hospital dealing with these issues, but I believe a diagnosis is extremely important if you’re having symptoms that you do not believe correlate to celiac!

  41. I decided eating gluten just for a diagnosis was not wortg it. I was diagnosed through blood work. Since there is no cure why put myself through the pain.

  42. I was able to take short term disability when I had a bad flare up.

    I required a diagnosis to do that.

    Also, you can claim the difference between regular priced bread and gluten free bread on your taxes with a diagnosis.

    If you are a student, you get special accommodations as well.

    I think it’s better to have the diagnosis and not need it, then need it and not have it.

    Typically, you only need to eat gluten for 3 weeks, yes it’s painful and uncomfortable, but then you never have to do it again!

  43. If you have Celiac, you will need to be much more vigilant about other diseases/conditions. ie:cancer, infertility, other autoimmune diseases. Even if you “feel “ okay, the internal damage is being done. Check out Celiac.org

  44. I wonder the same thing. To diagnose my son he would have to go back to gluten. It’s something he is unwilling to do. It’s too hard for him to concentrate at school. This is his 8th grade year. I asked his doctor. Insurance would not cover the test because treatment is working. He’s on Medicaid. And she said they won’t pay for the test because it’s unnecessary because his symptoms are gone with treatment. He is diagnosed with a wheat and gluten allergy. If I need a, accommodations that should do it. They diagnosed him because his symptoms go away with treatment. It’s also funny to me that people can worry about cross-contamination because it can still do damage. But they will eat a bunch of gluten on purpose for a test.

  45. It can sometimes be needed for “legal” reasons. If your child needs accommodations at school they will need a medical diagnosis. Your doctor needs to write one based on their diagnosis. How the doctor reaches that diagnosis can vary and may, for that doctor, require testing. If the job you were hired for now endangers your health and you need accommodations or you even need to leave your job you will need a diagnosis to get what you need and protect yourself. If your celiac disease has you so ill you need to collect disability you must have medical proof to file a claim.

  46. I’ve been GF for two years. Before I cut out the gluten I was so sick I felt like I was dying. The pain was so bad I couldn’t even stand it when I urinated. I got glutened some how this week. The pain is just like it was before. I can’t imagine eating gluten on purpose and putting myself threw the agony. Maybe my symptoms are worse than other peoples.

  47. Everyone is at a different stage and so for you it may not be the right avenue. Also you could have a genetic test to see if you have the HLADQ2 or 8 gene. If you have that gene and the symptoms you already know you have it so No- don’t put yourself through the misery. However, sometimes it helps to be diagnosed to be more serious about the gf diet. For example, I have an identical twin sister who hasn’t been diagnosed with Celiac dusease and so sometimes she eats gf and sometimes she cheats. Whereas I an very strict. She most definitely needs to be on a strict gf diet due to her symptoms and chances of the gene turning on.

  48. I was gluten free but still having bowel issues, anemia and stomach cramps, aching body. Ruling coeliac out so we can then find root source for my issues eg it could be fibromyalgia or other problems, also looking for cancer, polops and diverticulitis.

Leave an answer

Browse
Browse