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Endoscopy results - gastritis and more

JaneWhoLovesRain
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JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

I was diagnosed and have been eating gluten-free for 10 years - things were fine until a year ago when I developed diarrhea and then constipation and other unpleasant poop symptoms which persist right up until now.  I had a colonoscopy 8 months ago and that was fine except for one polyp which was removed.  Blood tests for celiac were negative.  Because of on-going upper abdominal tenderness I recently had an endoscopy and am awaiting biopsy results.  Initial impression shows gastritis, erosive gastropathy and duodenitis.  Endoscopy from 6 years ago was normal. 

I'm freaking out over this.  From talking with Dr. GoogIe I see H. pylori is the most common cause of this; I was tested 5 years ago and was negative at that time.  I don't drink alcohol, don't take drugs and rarely take NASID's so that can't be the cause of this.  Since this uncomfortableness has been going on for over a year I think it would be considered "chronic" rather than "acute."  Yet, chronic gastritis is very rare, occurring in only 2 out of 10,000 people.

I'm super cautious with what I eat and with Covid I haven't even eaten food prepared by anyone else in well over a year. 

Because my "health anxiety" mind always goes to worse case scenario, all I can think is cancer of the stomach.  I would be thrilled if the biopsy showed I actually do have active celiac and that was the reason for all ...itis's in my belly.   But it seems unlikely given what I eat.  I've tested several things with the ez gluten test kit and all have come out negative.

Anyone else found to have all these irregularities after being gluten free for such a long time?

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Scott Adams Grand Master
Scott Adams
Posted

Many people have ongoing symptoms after they go gluten-free, but it is somewhat unusual for there to be a 10 year interval between this, so be sure to keep working with your doctor to eliminate any possible issues that could cause this.

This article might be helpful, as it covers many issues that can cause celiacs to not recover fully:

 

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    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
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      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      Feeling ill

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      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      Advantages vs. Disadvantages of having an official Celiac diagnosis

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      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
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