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Previously asymptomatic, celiac diagnosis, now symptoms after going gluten-free?????!!!!????


Willa E.

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Willa E. Newbie

Recently diagnosed with celiac in November. Never had any of the typical symptoms. Severe weight loss and many, many tests and finally a diagnosis after an endoscopy.

after eating gluten free for 3 months, I’ve been feeling awful for about 10 days with what could be “typical” gluten exposure symptoms. Has anyone else become symptomatic after going gluten free? Maybe it’s just a stomach bug????

 

 


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trents Grand Master

What you describe is common. Here are some possibilities:

1. CC (Cross Contamination). Things that do not purposely include gluten as an ingredient come in contact with gluten containing grains during production, transportation, storage and/or processing. Classic examples would be oatmeal and lentils.

2. There has been a change in the formulation of some processed food item that used to be gluten free.

3. You have developed an intolerance/sensitivity to a non-gluten food. This is very common in the celaic community due to the immune system dysfunction/leaky gut syndrome. Common ones are oat protein, dairy, eggs, soy, corn.

4. A stomach bug.

Scott Adams Grand Master

If I were you I would examine my diet very closely for anything you might have added recently. Do you eat in restaurants? If so, this is the most common source of contamination.

You may also want to keep a food diary for a while to see if you can find a connection with something you are eating and your symptoms.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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