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Waiting For Results


MsJ

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MsJ Rookie

I went to my GI Dr. to schedule a routine colonoscopy (family history) and based on our conversation about my bathroom habits, she decided to run a Celiac Panel. She also ran an Adult Food Allergy test and gave me a take-home Hydrogen Breath Test for Lactose intolerance. I had the blood drawn on the 12th and am still waiting to hear back.

My symptoms/issues are:

Hashimoto's

Rosacea

Soft BM's 6+ times a day

Fatigue

The fatigue is what I really want to ditch. I hate being tired all the time. I've always blamed it on my Hashimoto's, but my lab numbers are in the ok range.

I did a "milk intolerance test" this morning. Basically drank a glass of milk first thing on an empty stomach and it gave me the runs. I still have to perform the full breath test but it looks pretty clear that lactose and I are not on friendly terms.

Whatever my test results say, I'm going to give up gluten and see how it makes me feel. I haven't done so yet just in case I need to schedule for a biopsy and thanks to reading this board, I see I need to be on gluten for that to be an accurate test.

Thanks for reading - I just needed to get this out of my head and down on "paper".


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beachbirdie Contributor

I went to my GI Dr. to schedule a routine colonoscopy (family history) and based on our conversation about my bathroom habits, she decided to run a Celiac Panel. She also ran an Adult Food Allergy test and gave me a take-home Hydrogen Breath Test for Lactose intolerance. I had the blood drawn on the 12th and am still waiting to hear back.

My symptoms/issues are:

Hashimoto's

Rosacea

Soft BM's 6+ times a day

Fatigue

The fatigue is what I really want to ditch. I hate being tired all the time. I've always blamed it on my Hashimoto's, but my lab numbers are in the ok range.

I did a "milk intolerance test" this morning. Basically drank a glass of milk first thing on an empty stomach and it gave me the runs. I still have to perform the full breath test but it looks pretty clear that lactose and I are not on friendly terms.

Whatever my test results say, I'm going to give up gluten and see how it makes me feel. I haven't done so yet just in case I need to schedule for a biopsy and thanks to reading this board, I see I need to be on gluten for that to be an accurate test.

Thanks for reading - I just needed to get this out of my head and down on "paper".

With Hashimoto's you just might be sensitive to gluten; it often is associated with celiac. I have Hashi's, and also experience fatigue with normal thyroid numbers. I sleep 10 hours a night, and wake up more tired than when I go to bed!

Anyway, just wanted to say welcome! I know you are on "pins and needles" while awaiting your results! How nice that your doctor thought to test you, so many have to be pushed, prodded, and begged in order to get celiac testing!

Keep us updated!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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