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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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  • Posts

    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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