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Could This Be Celiac Or Something Else?


DawnE8199

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DawnE8199 Newbie

I just typed this all out and then the board ate it. GRRRRRRR.

Symptoms:

SEVERE lower right abdominal pain about where my ovary is. At times so bad that it hurts to put my right foot on the ground, hurts to breath, walk or talk. Hurts to be touched on any part of my body because it will make that spot hurt worse. It will even wake me up in the middle of the night or make some morning terribly hard to get out of bed until it eases up.

Bowels have never been “regular’ like most people. As I’ve become an adult they have become much more regular but I’m not a once a day kind of person. Usually every 2 days or so.

Just found I have slight acid reflux which is helped without meds as long as I stop eating 3 hrs before bed and prop the bed up.

I can’t have things on my abdominal section. Maybe this is a personal quirk but it just bothers me. For instance my husband might lay his arm over my stomach and I will move it above my ribs or below my hips.

History:

2004ish – blood work came back that I might have a case for celiac (this was not the dna test)

- first biopsy said an almost positive it for celiac although I was on a gluten-free diet because one doctor told me to eat gluten-free and the GI did not know that I was eating gluten-free

- had a barium enema to check out my intestines which showed up fine

- demanded second biopsy AFTER eating a full gluten diet a month prior which came back inconclusive

- I was told I have IBS and to live with it

- since that test I have been eating a normal gluten diet, although I eat 95% unprocessed foods/organic/natural

- August 2009 the pain came back with a KICK. I am sure I had it prior to that but it was just something I lived with.

- 12/3/09 had endometriosis taken out but on the left side and they found none on the right side to explain the pain

Today – I am in pain. I’ve been gluten-free for 5 days and the pain has not eased up one bit. I’ve been exercising, drinking water (it’s all I drink), and living a healthy lifestyle minus the pain.

I know the text book cases of celiac but what are the non text book…..could I be one….or does this sound like something else? What should I ask my doctors beyond…what is the next step? I would love to have some ideas to research before diving back in. I just really want this pain to be gone gone gone.


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ravenwoodglass Mentor

"2004ish

DawnE8199 Newbie
"2004ish

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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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