Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Strange Possibly Stupid Question


Octoberme

Recommended Posts

Octoberme Apprentice

Okay......say you have been having stomach problems and no one can give you answers so you yourself decide to go on a gluten free diet wihtout ever having a doctor say you need to be gluten free.

After a few months now, you are feeling better and have decided that maybe it was nto gluten / wheat that was bothering you and maybe something else that has now been " fixed ". So.....you decide to eat wheat / gluten again. Will it cause you upset in this case if you actually are NOT allergic / intolerant to it? Woudl that be a good test to find out why? Or would it stil bother you plainly because you have been without it for months even if not allergic / intolerant to it?

May be a dumb question, but I am super curious.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Your question is neither strange nor stupid. I did the same thing, due to clueless doctors. I decided to eliminate gluten on my own, and my positive response to the gluten-free diet was amazing.

I challenged myself with gluten several times, always with the same result. I now get a delayed reaction to gluten, but it is predictable that within 24 to 48 hours I will get bloating, terrible bowel cramps and diarrhea. There is no other possible answer for that but that I am obviously gluten intolerant.

I will be gluten-free for life as a result.

Octoberme Apprentice

Lol, thanks for the reply. Glad that was not a silly question. Basically I am sick o fthe doctors here and the time wait and the way they just want to sluff stuff off and tell you to " deal with it ". So, i decided to do some fixin on my own. So far the gluten free diet has been fabulous for the most part, though I do think that I have some other triggers or something else that is bothering me. I am weaning through stuff however but ALOS not being impatient and letting this gluten free thing work ( I am told it can take a LONG while to feel totally better and you get side effects and symptoms for a while after going gluten free still?? )....

However I wa sjust curious as to what would happen if I decided to ....gluten myself :-P\

Thanks :-)

Ivanna44 Apprentice
Okay......say you have been having stomach problems and no one can give you answers so you yourself decide to go on a gluten free diet wihtout ever having a doctor say you need to be gluten free.

After a few months now, you are feeling better and have decided that maybe it was nto gluten / wheat that was bothering you and maybe something else that has now been " fixed ". So.....you decide to eat wheat / gluten again. Will it cause you upset in this case if you actually are NOT allergic / intolerant to it? Woudl that be a good test to find out why? Or would it stil bother you plainly because you have been without it for months even if not allergic / intolerant to it?

May be a dumb question, but I am super curious.

Hi Octoberme,

I agree with Ursa, and by the way, welcome back Ursa, I hope your trip/visit went well. :) ... From what I've seen here on the forums, there are a number of people here, that seemed to believe they had it, had the symptons, and basically played dective doctor on their own to find out if it did Truly affect them. For many of them too, it seems like they have an awful time convincing doctors just to run a few tests to see if they do have it. :( Cost of testing most likely being the reason for not running those tests. Heaven forbid, you actually know your body more than doctors who just peek at it . I do feel for those that have a hard time convincing their doctors just to look in that area. :angry:

I am not quite sure whether or not being "away" from a particular food can cause "upset" if it re-introduced again. Thats something I guess you could google search. I've often wondered that in my case too.

The first time I purposely gluttened myself, had reaction in 2 hours.

The 2nd time I accidently had it, was sick in 10 mins, and was crap feeling and felt its effects for 3 days.

I probably will "glutten" myself in a month time or so. again the curiousity factor so on. Cause you wonder if the first couple of times are just "flukes" so on, maybe just some virus you got at same time so on. No one IMO really chooses to be gluten-free on purpose, because it's in Everything and you do miss it. I have a big time craving now for stuff like a Tim Horton's donut. The eating out factor is bothering me now (that freedom) . Besides feeling like an "outcast" by being gluten-free for health reasons, cause not many people take it seriously like they would a Peanut allergy. Again, its lack of understanding from others, that can't understand what it's like to be off a food you love and trying to come to terms due to health reasons, with being off it for LIFE!! I sooooooooo miss breads like Rye, Focassa and cheese buns, regular rice crispie squares.

Sorry, I'm kinda "down" today :*( with this whole gluten-free thing. I know it's for my health so on, but I feel like an "outcast." Even in my own home.

Hopefully some more people will answer your posting question, Octoberme. I am rather curious myself on that question. Whether you can in essence "make" yourself gluten intolerant by taking that food away.

Octoberme Apprentice

Thanks Ivanna44!! I am very curious about this as well and whatever I will find out I will let you know.

The doctors here....well my main thing is my general doctor can only go so far when it comes to testing. And then the specialist, well it has been already two months and i have another two months or so before I get to even SEE him. And then if he is to want some sort of colonoscopy or something, it will be a wait list for THAT here. So.....whether it is gluten or leaky guy or colitis or IBS or whatever is causing these symptoms, I cannot live like this anymore. My work is about to fire me for so many days missed. My boyfriend misses his regular gluten-free and I am snappy and cranky and tired allt he time. My friends wonder where the hell I have disappeared to, and I will go DAYS without leaving my apartment. NOT healthy. Lol, so i did some looksy on my own.

But yes, so far it is working for the most part. And once i get myself to a good point for a few weeks as I think that I also have other issues other then possibly gluten so I have to figure out those first, then I am going to gluten myself anf see what happens. I will keep ya informed.

And I am sorry to hear that you are having a bad time with all this feeling like an outcast. I knwo what you mean. My boyfriend sometimes does not seem to take ot seiously as I watch him dip his ritz cracker right into the peanut butter jer and scoop it out. What the heck?? Lol, right after he does say " ooops, I should not have done that right " ...but it is kinda too late now isn't it? Or last night when he made himself hot daogs with his nice fresh buns, and I watched as he got crumbs ALL over the counter and I nicely reminded him that THIS TIME he should clean them himself as it is best for him to do it. Two hours later I went to go make myself some cardboard gluten free toast and low and behold, bread crumbs everywhere!!

Lol, then I have the nice thing of family dinner at my mom's. Lately she just has nto been doing them because she has no clue how to organize it all so that I can eat too. before I woudl eithe rjust bring my own food, or sit and watch them eat while i munches on sweet potatoes. My friends all wanna go out for appies and then party, and ALL of those are a no for me. I am too scared to eat out anywhere, not even sure what to pick, and then as for going out to the bar....well all grain vodka's do bother me, and I am sure they will not carry the potato vodka and even then....

Ahhh, it jut sucks. So I for sure feel you and I definately look at all these people eating all this CRAP and wonder - why them not me '? Why cannot I stuff three slicesof pizza, some cookies and possibly a piece of cake in me and feel GREAT still?

*sigh*, but then I rememeber thaty being healthy and feeling good is pretty fricken awesome too!!

Thanks again for your reply

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,196
    • Most Online (within 30 mins)
      7,748

    Jen Fleming
    Newest Member
    Jen Fleming
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.