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Trying To Find Some Answers


Hd7747474

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Hd7747474 Newbie

Over the last year, I have developed and have been struggling with the following symptoms. I've been calling out of work sick, canceling on social events, and just feeling irritable and lousy.

  • Diarrhea--foul-smelling, watery, several times a week
  • Foul-smelling gas
  • Lactose intolerance
  • Abdominal pain and cramping
  • Feeling like I'm about to have diarrhea but can't go

I've also had eczema for a few years now on the back of my scalp, and it has recently expanded into a bumpy, extremely itchy rash in some areas.

When I first when to the doctor, she didn't seem to take me seriously and suggested I had lactose intolerance and/or IBS. She advised me to cut out dairy and keep a food journal of what I ate and when I had symptoms. Although eliminating dairy helped a little, I was still sick several times a week. About 6 months later, she finally took me seriously and did some tests for parasites, thyroid problems, etc. All came back negative. Then she ordered a few celiac tests:

TISSUE TRANSGLUTAMINASE IGG

My value 0.34

Index <0.90

TISSUE TRANSGLUTAMINASE IGA

My value 1.11

Index <0.90

When the tIgA came back positive, I began lurking on this site, reading all up about celiac disease. My doctor finally referred me to a GI, who tested my amalyse, vitamin b12, INR, bilubrin, alkaline phosphatase, albumin and ALT. Everything except for the ALT came back normal (ALT was a little high, although it was high when I had it tested several years ago before these symptoms started).

The GI performed a colonoscopy and upper endoscopy, and the biopsies for both came back negative. The office told me this was "good news," but it wasn't for me because I was desperately looking for some answers.

I am hoping for some guidance from this community, as I'm at a loss for what to do now. My GI doesn't seem to be very proactive, so I feel like I'm my only advocate for my health.

  • What could it mean that I had positive tIgA but negative tIgG and negative biopsies?
  • Should I go gluten free now?
  • What else should I ask my doctor to do/test me for?


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cassP Contributor

there's more tests to be taken for a more complete Celiac panel...

Ttg Iga & Igg is only a small piece to the puzzle- Ttg can also be associated with other diseases (*other members on here can tell you more about that)

your GI should have also tested for:

Antigliadin Iga & Igg

total serum Iga

Endomysial Antibodies

if you're not too sick- it would be a good idea to stay on a gluten filled diet untill you get those other tests- do it soon, so u can get on a gluten free diet if u want.

im sure the other members will chime in too- A LOT of smart people on here that should have been doctors. good luck :)

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
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      Does my iron loss sound like celiac to you?
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      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).
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    • 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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