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Celiac, Ileitis, Or Ibs?


Teed073193

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Teed073193 Newbie

I have been tested for Celiac with blood test and biopsy. I have also had a colonoscopy. I am not sure what the result mean or what to do next can someone help me?

My dad has Crohn's and I have had stomach problems for a long time. Some of my symptoms are abdominal pain, bloating, extreme diarrhea all within mins of eating (not all the time but sometimes, it comes and goes), most always have diarrhea when I drink coffee, orange juice, tea, and grape juice. I also have very low vitamin D. I am very tired all the time do not sleep well (may be because of working swing shifts but never really slept good), I also get very irritable very easily. I have had hives sometimes when I eat, I can have the same thing to eat two days in a row and have hives one day and not the other.

The biopsy did not show any signs of crohn's, colitis, no aphthous ulcers, they also said I did not have celiac. I had inflamed villi in the terminal ileum which Dr said suggestive of ileitis. What is this and what do I do about it?

blood test results

Gliadin Antibody IgG <3

reference range <11 negative

11-17 equivocal

>17 positive

Gliadin Antibody IgA (high) 25

reference range <11 negative

11-17 equivocal

>17 positive

Endomysical Ab (IgA) screen negative

tTG-IgG Ab: <3

reference range <7 negative

7-10 equivocal

>10 positive

tTG IgA Ab: <3

reference range <5 negative

5-8 equivocal

>8 positive

IgA: 293

reference range 81 to 463

Please help me find out what this is?!

Thanks


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      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
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      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
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      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
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