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Still having symptoms


CorgisInOregon

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CorgisInOregon Newbie

Hi all,

I am new in my diagnosis. I’ve been eliminating gluten for four months, but have still had many times where I have eaten gluten accidentally.

I’ve been working hard to make sure I don’t accidentally eat gluten, or eat something that has been cross contaminated with gluten. However I still have days where I end up with a horrible stomach ache. It doesn’t feel the same as when I get gluttened.

(I’ve also learned that I have other food allergies, like dairy, so I stay clear of those foods as well.)

Is it normal to still have stomach pain/bloating/indigestion even after eliminating gluten from your diet? 
 

thanks!


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Scott Adams Grand Master

Recovery can take an average of 2 years IF you are 100% gluten-free. Many people take enzymes like GliadinX (they are a sponsor here) to help them deal with cross-contamination if they eat outside their homes...there are many studies that support their use for small amounts of accidental gluten:

https://www.celiac.com/search/?q=gliadinx&quick=1&type=cms_records2

Above all, you need to be 100% gluten-free, and you may also need to eliminate other things, at least temporarily, like cow's milk, corn, soy, etc., until you've fully healed.

CorgisInOregon Newbie

Thank you for the information. So is it normal to have flare ups during the recovery process? 

DJFL77I Experienced

i'm at 5 months and i still have upset stomach..  not as bad as it was a few months earlier though..  its improving.. 

My Dr said 6 - 12 months.....

and don't eat at restaurants...

i never eat out... only fresh foods...

the only "packaged" foods i eat right now is:  Greek Yogurt / certified gluten free,  Bryers vanilla ice cream lactose free / gluten free,  and plain potato chips certified gluten free with only 3 ingredients, organic potatoes, sea salt, sunflower oil..

dairy doesn't bother me

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    • Scott Adams
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      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
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      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
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