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Gluten Maybe?

sdanger

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sdanger Newbie
sdanger
Posted

I recently went in to have a celiac panel, and the doctor, without going into too much detail, made a mockery of my thinking I am celiac. I've been told I have everything from a brain tumor (without any CT scan or evidence at all), to a hole in my heart (which an EKG resolved), and also that I just had fibromyalgia and would have to live with taking aspirin everyday.

Well, I argued that it would make sense to start with simple things such as diet first, before continuing to jump to such extremes, especially since I am no longer insured.

My symptoms include:

migraines

sickness up to vomiting after eating

fatty stools (and only able to go about once a week)

embarrassing gas after eating breads

brittle bones (have broken several over the years)

hypoglycemia

bone and joint pain

brain fog

short term memory loss

sensitive teeth

sharp pains around stomach after eating

thinning hair and hair loss

easy bruising

mouth ulcers

pins and needles in toes, fingers, and sometimes lips

depression and irritability

Unable to gain much weight (stopped growing completely by 7th grade, and have stayed around the same weight since)

Anyway, these are some of the symptoms that led me to believe it could be celiac and I could be tested.

The lab results I was sent read:

Tiss Transglutamin IgA <3

Anti- Gliaddin IgA Ab <3

IgA 183

I received no explanation from the doctor other than its normal and I should stop eating gluten for a few weeks. I'm not sure what any of it means, since the doctor also ridiculed me for not going off gluten before my test, saying I should have done that first and if I felt better I wouldn't have had any reason to come in.

Needless to say, I've been off gluten for about 3 weeks now, and within the first 3 days had noticed a tremendous difference. I could concentrate again, my muscle and joint pains have nearly diminished, and I do not feel nauseous or gassy after eating.

However, I now have a sharp stabbing pain around where my stomach is located immediately following eating.

Is it possible I am celiac even though the doctor said it was all normal? I'm thinking about going for a second opinion since the first guy was such a jerk to begin with. Is a biopsy necessary even though I already feel extremely better since getting off gluten?

Sorry about so much detail. I'm determined to finally know what is wrong with me.

Thank you,

Stacey

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yes it is possible to have celiac and have negative blood tests. At least your doctor advised you to try the diet, none of my ever even mentioned it.

It sounds like you are getting good results with the diet. Some of us do have additional intolerance with soy and casien (dairy) being the most common.

If you can go with whole foods for a while and then after you have been feeling better for a while add back in soy products and then dairy for a week each. If the pain doesn't return you can keep them in.

For me soy causes the type of pain you are having but that may not be the case for you.

Oh and I would find a new doctor as your doctor sounds less then ideal. To worry someone about a brain tumor with no tests to back it up is irresponsible IMHO. Sublingual B12 may help with the tingles and many of us are low in that. If your doctor will run full vitamin and mineral panels to make sure you are not low in other nutrients that would be helpful.

Kamma Explorer
Kamma
Posted

In addition to what Ravenwood said, there is also evidence now for Non Celiac Gluten Intolerance/Sensitivity which does not show up on the testing that they do for celiac. You might find this article helpful which highlights Dr. Fasano's (University of Maryland Centre for Celiac Research) research and validation for NCGI.

Open Original Shared Link

and...if you decide to stay with that doctor, print it out or better yet go to the research journal itself and print out the whole study, and bang the doctor over the head with it with the admonishment and ridicule that he really, really should stay on top of the latest research. (I am soooo NOT a fan of doctors).

Aly1 Contributor
Aly1
Posted

I agree with the previous posters but did want to add that if you think you might want to get a biopsy done you must keep eating gluten until that test is completed...

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