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Good News: Healed Intestine & Normal Bloodwork

fletchffletch

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fletchffletch Rookie
fletchffletch
Posted

Let's all help my doctor help me...

Background: My six month bloodwork and biopsy just came back: no intestinal damage and normal bloodwork. That's good news knowing that I had moderate to severe atrophy in December. This result surprised me because, frankly, I've never felt worse. At the initial diagnosis I was symptom free (save for being covered in DH). After two to three weeks of gluten-free diet, the DH was 95% gone but I began to have constant low-grade GI cruddiness. I had been assuming this was due me accidentally eating gluten. Maybe not. My doctor is looking into it, but I thought I'd get a second opinion from the forum.

Has anyone had the same symptom history as me? (read: good until gluten-free diet then bad thereafter, even after intestinal healing). My symptoms vary, but are almost always low-grade and always present. I did a week of diary free awhile back with no change in symptoms... I'm familiar with the basic complications from celiac --- other food intolerances (dairy, soy...), bacteria overgrowth, lactose intolerance, enzyme deficiency, etc -- but was wondering if my symptoms lend themselves to a specific complication. Thanks...

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Jestgar Rising Star
Jestgar
Posted

I think you should start looking at other foods...

Ursa Major Collaborator
Ursa Major
Posted

Maybe parasites? Have you been tested for Lyme Disease? What about thyroid and/or adrenal problems? Nightshade foods?

When you say you feel cruddy, what exactly are your symptoms?

jerseyangel Proficient
jerseyangel
Posted

It's possible that you are still getting trace amounts of gluten in your diet. What happens sometimes is that the longer we are off gluten, the more sensitive to it we become.

The first thing I would do is go through your kitchen and make sure that you have replaced any wooden utensils and boards, collanders, scratched non-stick pans, toaster and have your gluten-free foods separated from those containing gluten. A dish towel or sponge can also harbor gluten.

Check your meds and suppliments with the manufacturer to be sure they are gluten-free. Do the same with your personal care products.

Start keeping a simple food diary, being on the lookout for any processed foods that may be a source of cross contamination. Doing this will also tip you off to any additional food intolerances that may be there.

I've been gluten-free for 3 years, and recently repeatedly glutened myself eating processed dried fruit and nuts that turned out to be make on shared lines with wheat. Gluten can hide anywhere and a trace will most definately keep you from healing.

If you want, list the foods you are eating and we can help you there. Also, if you tend to eat out, I would eat at home until you have this worked out. It might also be helpful to cut out dairy at least for a while, if you haven't already.

Hang in there :)

fletchffletch Rookie
fletchffletch
Posted
  • Author

Thanks for the responses. I plan to start eliminating some foods here within a week.

Patti, is it possible to be getting trace amounts of gluten (enough to cause sickness) and have normal bloodwork and biopsy? My 6-month bloodwork tests in June were (and I was feeling bad on the day of the test):

Endo IGA: 5.7

Endo IGG: 0.0

Gliadin IGA: 4.2

Gliadin IGG: 1.1

Ursa -- I'll ask my doc about parasites, thyroid, etc. My symptoms are basically low-grade standard GI symptoms (gas, nausea, bloating, loose stool, constipation, etc.) I think the only one I haven't had is heartburn/reflux. By "low-grade" I mean still able to function (read: I don't have to lie in bed). I kept a food diary for about 4 months, but it showed no real patterns whatsoever. It seems the problems are unrelated to a specific food or related to a food that I have almost everyday. One interesting note here is that about once a month or more my normal symptoms will get a little worse. Half of these episodes will include a little DH, half won't. My diary hasn't been able to tie them to any food. We scoured our toothpaste, shampoo, soap, etc. for traces of gluten, but all are gluten-free...

We also have a gluten-free kitchen (we think...) and rarely eat out. Thanks for all the help!

holdthegluten Rising Star
holdthegluten
Posted
Thanks for the responses. I plan to start eliminating some foods here within a week.

Patti, is it possible to be getting trace amounts of gluten (enough to cause sickness) and have normal bloodwork and biopsy? My 6-month bloodwork tests in June were (and I was feeling bad on the day of the test):

Endo IGA: 5.7

Endo IGG: 0.0

Gliadin IGA: 4.2

Gliadin IGG: 1.1

Ursa -- I'll ask my doc about parasites, thyroid, etc. My symptoms are basically low-grade standard GI symptoms (gas, nausea, bloating, loose stool, constipation, etc.) I think the only one I haven't had is heartburn/reflux. By "low-grade" I mean still able to function (read: I don't have to lie in bed). I kept a food diary for about 4 months, but it showed no real patterns whatsoever. It seems the problems are unrelated to a specific food or related to a food that I have almost everyday. One interesting note here is that about once a month or more my normal symptoms will get a little worse. Half of these episodes will include a little DH, half won't. My diary hasn't been able to tie them to any food. We scoured our toothpaste, shampoo, soap, etc. for traces of gluten, but all are gluten-free...

We also have a gluten-free kitchen (we think...) and rarely eat out. Thanks for all the help!

I am in exactly in the same boat as you..............I have been feeling crappy since diagnosis and i recently had an endoscopy and bloodwork, even a colonoscopy and everything is perfect (totally healed, etc.) I still have issues with nausea, fatigue, brain fog. I just did the OAT test from Great Plains Laboratory and got some great info. You need to have this test done as Rachel 24 on here will tell you. They found very high yeast problems, not just candida and bacterial overgrowth along with really high oxalates. The test check for metabolites of yeast/mold/bacteria and much more. It is very accurate and costs bout 275 dollars. This test i believe will help you figure out what is wrong. I suggest doing a very low carb no sugar diet (High Protein) and seeing how you feel. You may have yeast issues and probably dsysbiosis. The #1 reason why people still feel like crap even after completely healed is because of dysbiosis. Feel free to PM me with any questions.

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