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Celiac Disease


Daveb

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Daveb Rookie

So I'm from Canada and i'm 56, was diagnosed yesterday of having Celiac Disease.  My blood work showed i am really elevated, they told me i should be under 12 and i'm at over 250.

I have to change my life style but i guess i am worried that i may have damaged body parts?  As well how do you know if something is gluten free or not?

Thanks in Advance

Dave


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Ennis-TX Grand Master

Read the newbie 101 section to see about clearing out the house, pantry, fridge of stuff. Toss scratched cook ware, wooden spoons, condiment jars with crumbs, anything gluteny and clean up really well. Gluten is a protein smaller then a germ, think like blood and cleaning so the CSI team will not find the traces, bleach does not work to kill gluten, on the bright side 500F oven self clean will so you can save your cast iron cookware but running it there.

We normally suggest a whole foods diet approach at first, going with naturally gluten free foods unprocessed like fresh veggies, fruits, certified nuts/seeds (NOT processed in a facility that handles wheat Nuts.com/Mygerbs.com are great) fresh meats, eggs, and stuff like lundberg rice are examples.  Homemade batches of soups, stews, chili, cooked meats, baked sweet potatoes, are great examples of fresh whole food meals, I personally do omelettes and egg scrambles often.
We normally suggest dropping dairy and oats for a month or so to boost healing, those with celiac can have issues producing hte enzymes to break down dairy due to damaged villi in the intestines and oats even gluten-free are often still slightly CCed or in like 10% of celiacs like me we also react to oats in a similar fashion.

As gluten is found in wheat, barley, rye, and used very commonly in the food industry reading labels is a must to ALWAYS check ingredients. This becomes second nature and you find certain brand you trust later I will include a list o things I have found. Thankfully you now have stuff like Amazon, thrive market, glutenfreemall, etc to order this stuff now on.

https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

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      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
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      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.
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      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. 
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      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.
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