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Going Back On Gluten After gluten-free Diet


NEPD

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NEPD Newbie

Hello. I have recently gone gluten free after many inconclusive tests. I feel amazing now that I am gluten-free and plan on doing so forever if necessary.

However, I do want to "go back on gluten" to make sure that this is the cause of all my health problems. Does anyone have advice on how i can systematically do so? Or is there a specific food I should eat once and see what happens? Or eat all the gluten I can consume in one day? I am scared to go back on and worry about feeling horrible. But I know it is the right thing to do to make sure gluten is really my problem.

Also, is it possible that since I am not celiac diagnosed that I could ingest small amounts of gluten and not have a problem? I am mainly thinking of not having to worry about cross-contamination.

Finally, is it possible that i have to "clear" out my body of gluten every couple of months, but can otherwise not avoid it 100%

i think i am know the answer, but I wanted to see if others live 1/2 gluten free.


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skyyblues Newbie

I am still "undiagnosed" officially. I went to the GI doc and he scheduled a endoscopy and colonoscopy for the 12th of May. I met with him on a Tues after I had been gluten-free for 2 weeks. I was scared but agreed to go back to eating it for the test. I went out to dinner that night to a favoriet Mexican restuarant. Within 2 hrs of eating I started breaking out and spent the moring in the bathroom. :o By Friday I was so broke out and all the bathroom issues returned that I contacted both my docs and they said stop immediately. I am still having the scopes and they will find whatever they find but I know that I am not eating it ever again by choice!!!

They have rulled out a bunch of other stuff with blood tests and I am having a ultrasound of my livir and gall bladder tomorrow. I finally have a doc who told me that we need to get to the bottom of this. I think that if everything else comes out negative he will diagnose me by elimination. I really don't care anymore as I know what I am! :)

I make people aware of Celiac Disease everywhere I go! I can only hope that by more awareness someone will not have to suffer as I and many of you have. If docs are not going to recognize it then we as patients have to ask for testing which we can't do if we don't know. My sons and grandsons are going to be tested. Also my mom is going as I think she has had symptoms as long as I can remember. Depending upon the results I will be contacting the other members of our family, ie cousins, aunts, uncles, etc.

I am not sure if this helped or just piled more on to sift through.....Take care and my best to you in your quest for answers. B)

gfb1 Rookie
Hello. I have recently gone gluten free after many inconclusive tests. I feel amazing now that I am gluten-free and plan on doing so forever if necessary.

However, I do want to "go back on gluten" to make sure that this is the cause of all my health problems. Does anyone have advice on how i can systematically do so? Or is there a specific food I should eat once and see what happens? Or eat all the gluten I can consume in one day? I am scared to go back on and worry about feeling horrible. But I know it is the right thing to do to make sure gluten is really my problem.

Also, is it possible that since I am not celiac diagnosed that I could ingest small amounts of gluten and not have a problem? I am mainly thinking of not having to worry about cross-contamination.

Finally, is it possible that i have to "clear" out my body of gluten every couple of months, but can otherwise not avoid it 100%

i think i am know the answer, but I wanted to see if others live 1/2 gluten free.

there are no data to confirm what i am about to suggest. however. some anecdotal data exists.

my concern is that the 'on-again'/'off-again' diet you propose is very dangerous and could make each subsequent exposure to gluten more severe.

since a large part of celiac disease is the bodies' immune response to gluten/gliadin contacting the intestinal mucosa and/or crossing the damaged mucosa into the bloodstream -- you would be subjecting yourself to a process known as sensitization -- effectively priming your immune system to respond to gluten. subsequent exposures could result in HYPERsensitivity. this type of antigen exposure can lead to anaphylaxis (like a bee sting). i doubt that gluten exposure results directly in anaphalaxys -- BUT, it certainly could lead to the more severe reactions that some members of this group can attest to after accidental exposure to gluten.

for example, my wife has extreme joint swelling and pain -- rheumatoid arthritis-like in symptomology. this has gotten much worse over the years, to the point that she cannot walk after an episode. other people (with other types of reactions to gluten), have also reported a worsening of the responses (e.g., DH) as they age.

so.... if you are indeed celiac. don't screw around trying to figure out what you can do to eat gluten.

just don't do it.

CMG Rookie
Hello. I have recently gone gluten free after many inconclusive tests. I feel amazing now that I am gluten-free and plan on doing so forever if necessary.

However, I do want to "go back on gluten" to make sure that this is the cause of all my health problems. Does anyone have advice on how i can systematically do so? Or is there a specific food I should eat once and see what happens? Or eat all the gluten I can consume in one day? I am scared to go back on and worry about feeling horrible. But I know it is the right thing to do to make sure gluten is really my problem.

Also, is it possible that since I am not celiac diagnosed that I could ingest small amounts of gluten and not have a problem? I am mainly thinking of not having to worry about cross-contamination.

Finally, is it possible that i have to "clear" out my body of gluten every couple of months, but can otherwise not avoid it 100%

i think i am know the answer, but I wanted to see if others live 1/2 gluten free.

Your questions sound like mine just a few months ago.

I had been gluten-lite for a long time -- just knew that I felt better on low carb diet and that I did better with rice than with pasta. This past December, my allergist ordered the celiac plus panel for me, which includes the genetic test. The celiac panel, of course, was negative (because I had barely been eating gluten), but, I learned that I do have the DQ2 gene.

So, here's the rest of my story. Over the holidays, I didn't worry too much about what I was eating, but noted that every time I ate pasta or cookies (at my Italian in-laws house) I was overwhelmingly tired, headachy, and my arthritis symptoms flared up. I then decided to do a gluten challenge. Four servings of wheat per day for a month. Within the first day I was bloated, gassy and had reflux. Intestinal symptoms (previously not the most significant of my symptoms) began the next day. Over the next several days the list of symptoms expanded - an itchy blistery rash all over my scalp, mouth sores, neuropathy, dizziness, fatigue, arthritis, and the list goes on. I continued the challenge for the sake of the biopsy - which, of course, was negative. I have been gluten free since the day of the biopsy and I will never go back.

As for your cross contamination question, I assumed I would be immune to that since all my testing was negative. I figured I'm gluten sensitive, not celiac. Now I know differently, I have reacted from a communion wafer, salad dressing in a restaurant, and french fries that probably were cooked in the same fryer as batter dipped food. I can sense it almost immediately and have been stunned by how sensitive I have become. The difference between gluten-lite and gluten-free is significant.

I wish you well in whatever decision you make. For me, I needed the drama of all the symptoms to believe that gluten-free has to be 100% and forever. (And by the way, I'm now arthritis free for the first time in about 6 years.)

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