Help Understanding Results And Seeking Further Testing

[ChaChaCha]

At the age of 12 I started breaking out in idiopathic hives all over my body. Over the past years it has only been worse. Two years ago I was diagnosed Anemic. I had started taking prenatal pills 3 years prior because I was concerned with lack of nutrients. I was a vegetarian for 4 years and 2 years into the diet, began to lose my hair. My doctor did a number of tests and ruled out an illness that caused it. He said it was due to stress. For the last year I've had constant stomach problems. They've done blood work, ultrasounds and medication with no result. In the end, Doc gave me heart burn medication and told me to keep the diet. No matter what I eat, my stomach is loud. I'm bloaded. I take 200 mg of iron a day to make-up for my deficiency. My last ferritin test was 155. I'm no longer anemic but I'm taking tons of iron.

I recenly asked my doctor to do a celiac disease test after my mother called to tell me I had many of the symptoms. We are Hispanc, however, my grandfather was adopted and his biological father was from Ireland. My mother has Diabetes Type I, Diabetes Type II runs on boths sides of my family and so does Thyroid, both high and low.

My results:

Tissue Transglutaminase .18 Standard Range <.90-

Tissue transglutaminase .16 Standard Range <.90-

I've researched the possibility of IgA Deficiency and having it throw off the test result but I can't for the life of me find a healthy result for a 28 year old woman to compare. Now I've discovered that my doctor probably didn't do a full range of tests. I'm relucant to contact him becuase every time I go in I always end up with "nothing." Does anyone have a similar story or any feedback regarding the tests I had done?

Thank you,

Vanessa

[Aly1]

I'm sorry you haven't gotten anywhere trying to find the cause of your symptoms. I can't comment on the tests you've had thus far; perhaps you could contact your local celiac support group (google!) and get a recommendation for a good celiac doc, for a second opinion? It couldn't hurt...

[mushroom]

My results:

Tissue Transglutaminase .18 Standard Range <.90-

Tissue transglutaminase .16 Standard Range <.90-

Your test results the way they are writtten are incomplete. I am assuming that the tests he ran were the tTG (Tissue Transglutaminase) IgA, and the tTG IgG, in which case both results were clearly in the negative range. The IgG version of a test is run if you are IgA deficient, so he covered both bases by running the IgA and IgG. That would be the only explanation for two tTG scores. So even if you are IgA deficient (tested by total serum IgA), it appears (if my assumption is correct) that your IgG test was also negative

The full celiac panel is

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The AGA tests are older and not relied upon very much any more. The DGP is the newest and most specific for celiac. The EMA is also very celiac specific and is usuallly run when the tTG is positive. The other testing options available to you are the DGP, and an endoscopy with biopsy (which he is not likely to order with really negative tTG scores).

If you can't get any further testing, you could try the genetic testing which gives information as to the likelihood of your developing celiac disease, since something seems to run in the family. Or you could trial the gluten free diet and see if your condition improves. Doctors always say we should not do this if we are not diagnosed, but if we are not diagnosable then should we just sufffer from gluten sensitivity (which, by the way, the medical community is now beginning to recognize as a separate entity from celiac disease)? No. If I were you and did not get any further with the tsting I would do the diet and give it a strict trial for three months. Hair loss and acid reflux are very common with celiac. I am assuming it is the vegetarian diet the doctor told you to keep on? when you say he said "keep the diet". This makes the gluten free diet a little bit harder but by no means impossible.

Ask any other questions you might have.