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

Gluten Challenge


annie76

Recommended Posts

annie76 Apprentice

I'm coming up on my two year anniversary dx, I haven't been here in quite some time. Anyway, I'm doing a gluten challenge, just curious if any of you have tried this, and what were your results. I've had a ton, and I'm fine, which we all know doesn't mean squat. I think its only a matter of time...


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

My eldest sister got inadvertently glutened staying at my mother's after being completely off gluten for over two years. She became ill with a virus as well as D. It took her one and a half months to get over it. Not saying this will happen to you, but be forewarned. I suggest you have plenty of digestive enzymes around plus pro-biotics and either marshmallow root or slippery elm to help counteract the effects.

Bea

darlindeb25 Collaborator

I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

gfp Enthusiast
I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

I think you hit it on the head .... Why ????

There are numerous reasonbs not to .... including provoking a rection to something or developing a condistion that is not reversible. Although these are rare it seems like rolling the dice purely for the sake of it?

NorthernElf Enthusiast

I think I understand the desire to do a gluten challenge. Wouldn't it be nice to have a piece of paper that simply states that you are celiac or cannot tolerate gluten ? To have it in black & white ?

I've been dealing with this for four years. There are many stages to acceptance. At first I was ill, had reflux, ached, was so tired & crabby, had big sinus issues, nausea, and a life long history of stomach issues. An illness triggered it all - magnified it. My doc decided I couldn't have celiacs and bungled my testing. I had a negative blood test after about a month of no gluten...my biopsy was over 3 months after that...so no positive celiac test.

HOWEVER - the proof is in the pudding, so to speak. I eat gluten, I get sick. It's that simple.

Unfortuanately, it's even worst than that. My reaction to gluten is very sensitive these days. Just one example - last month I had poached eggs in England & noted that second egg tasted vinegary. My SIL tells me they will use vinegar to keep the eggs together if they just make them in boiling water. Within half an hour I'm cramped, nauseated, and just want to go lie down. It doesn't occur to me until the next day that in England they use malt vinegar on pretty much everything. All I'm saying is - that was a totally blind test, so to speak. Whatever little bit of gluten is in whatever little bit of vinegar they used on my eggs was enough to wreck my morning. I went on holiday and lost a couple of pounds, this in England where they have quite a few gluten-free products. I'm convinced - I don't need a challenge to prove it.

I do agree it would be nice if they came up with a test like a pregnancy test that showed for sure that a person is celiac or intolerant. But as to a challenge, I couldn't handle it - and it would be murder on my intestinal tract (damage!).

annie76 Apprentice
I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

Thats just it. I do have celiac disease. I was dx with an upper endoscopy, biopsy. I have been "trace" glutened about 4 or 5 times in my two years being gluten free, and now, I've done this and I'm feeling fine. Its just strange to me. I've been asked why several times so far, I just want to see what happens, I don't even miss the food that much, being gluten free is so much healthier I have no intention of going back to it. I guess I'm just oddly curious.

samcarter Contributor

If I had a definitive diagnosis, I would never want to eat gluten again. Not even out of curiousity. You don't need to do a gluten challenge for a test, so I'm not understanding this desire to make yourself sick. Or to cause damage to your body, even if you don't feel it.


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

I suggest perhaps then you just save it for that rainy day for when somehow or other you get glutened by accident. It happens. Maybe you won't react because you have healed so much. Even the Merck Manual says celiac is insidious after all. It takes a while to develop on either end no doubt.

Bea

ShayFL Enthusiast

I just dont understand some things, because I am not that way. On a similar note, my Sis was just dx with BC in Feb. and she quit smoking cold turkey because she doenst want the cancer to come back. I was so very proud of her because she has been smoking for 30 years. And she has been feeling incredible. Losing weight. Exercising. Eating right. Getting healthy. Then 3 days ago, she tells me she had 1 cigarette at a bar with a beer just to see what it would be like again......***sigh***

Dont forget.....just like cigarettes...gluten is a drug. :(

annie76 Apprentice
I suggest perhaps then you just save it for that rainy day for when somehow or other you get glutened by accident. It happens. Maybe you won't react because you have healed so much. Even the Merck Manual says celiac is insidious after all. It takes a while to develop on either end no doubt.

Bea

Exactly, thats what I'm thinking. I remember it all started with reflux, and went downhill from there for about 2 years. I'm not going to do that again thats for sure! FYI, to you all...It wasn't all you think it would be, the cravings and missing the food that is. I think it just gets built up after years of not eating gluten. I'm done with it, after all its only food. Thank you for the friendly advice, and keeping the torches and pitchforks at bay!

ShayFL Enthusiast

We arent all angels....but we have good hearts. I just went grocery shopping......and saw the Bobboli pizza crust. I didnt eat that. But I used to make the most amazing homemade pizza. And I had a memory......***sigh***......My sourdough crust was to die for........but no more. :P

YoloGx Rookie

Yeah, similarly I was at whole food tonight and saw all the goodies they sell and felt a moment of sweet nostalgia. But I reminded myself how its a good thing I don't eat that stuff anymore. I am in much better shape than most people my age after all largely due to avoiding gluten, sugar and a variety of allergens -- as well as continuing to go for walks, do yoga etc.. Thankfully when I really get a sweet tooth I can bake myself a gluten free stevia sweetened goodie.

Bea

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

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

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    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.