What Test Now?

[LauraZ]

Both of my daughters and I tested high on the ELISA blood panels for wheat gluten/gliaden (they were at the highest end of high). The Transglut IGA blood tests for celiac were negative for all of us.

We all went gluten-free in September and all of our physical ailments cleared up. In the process, my oldest daughter (11 yo) became extremely sensitive to gluten. (We bought our own toaster because she was feeling the contamination of her dad's wheat toast.) I recently took her to a pediatric GI to rule out any thing other than gluten intolerance. After looking at a stomach x-ray and stool and urine tests, the doctor believed that it is probably gluten intolerance. She said the celiac blood test was really good, but it could miss a few cases and a biopsy was our best way to go.

She went on to say that it's important to know if it's celiac or not because if it is NOT celiac, it might just be a wheat allergy that my daughter could outgrow. If it is celiac, it would be lifelong. My daughter perked up when she heard the doctor say that she might outgrow it, so I feel a definitive answer would be great. BUT, from my reading I understand that a negative biopsy doesn't necessarily mean you don't have celiac.

To do this biopsy, my daughter would have to be eating gluten, three times a day for three weeks! She suffers for a half a day if her rice bread is toasted in a wheat toaster!

I was reading on Enterolabs website that they have genetic testing for the propensity for gluten sensitivity, but it didn't say that it was specifically testing for a celiac gene.

So I turn to this very well-informed community for the following questions:

1. Can you be this hyper-sensitive to gluten and NOT be celiac?

2. Can you outgrow a wheat allergy?

3. Is it worth going on gluten for 3 weeks to have a biopsy for Celiac?

4. Does the Enterolab genetic test identify only gluten-sensitivity and NOT celiac? (I'll probably email them directly, but just in case someone knows it already...)

Thanks so much!!

Laura

[RiceGuy]

While I can't answer your specific questions directly, I'm sure others here can and will. However, here's my two cents:

Seems to me there will be plenty of accidental glutenings in her life. Being as sensitive as she is, I personally doubt it would be outgrown, but I'm not a specialist in allergies. Then again, who is? Allergies are only becoming recognized in recent times from what I understand.

So I'd say it isn't worth going for any tests, especially when they are so unreliable, and she will still need to be totally gluten-free anyway. Maybe one day she will accidentally get gluten and not react, but I've read that afer years of being gluten-free, and having a fully working gut, it can take months of gluten to begin noticing the downward slide again. Anyway, IMHO by the time she is ready to try gluten, the tests may be very much improved, and probably cheaper too.

[Rachel--24]

I was reading on Enterolabs website that they have genetic testing for the propensity for gluten sensitivity, but it didn't say that it was specifically testing for a celiac gene.

So I turn to this very well-informed community for the following questions:

1. Can you be this hyper-sensitive to gluten and NOT be celiac?

2. Can you outgrow a wheat allergy?

3. Is it worth going on gluten for 3 weeks to have a biopsy for Celiac?

4. Does the Enterolab genetic test identify only gluten-sensitivity and NOT celiac? (I'll probably email them directly, but just in case someone knows it already...)

Thanks so much!!

Laura

First...Enterolab doesnt diagnose Celiac because traditionally the biopsy is still considered the "gold standard". Enterolab can only tell you if you are reacting to gluten, have damage occuring, and if you are genetically susceptible. You will have to put the pieces together from there.

1. You can be hyper-sensitive to gluten w/out being Celiac. This would be gluten intolerance and it would still be life-long. Some people believe gluten intolerance will eventually lead to full-blown celiac if the diet is not followed. She could also have Celiac but not have enough damage yet to have shown a positive tTG in the blood. This test is usually only positive after lots of damage has occurred. For example someone with Celaic may test negative for several years and then all of a sudden come back positive. Damage was happening over all those years but bloodtests werent showing it in the beginning stages.

2. I think you can outgrow a wheat allergy however, gluten intolerance is NOT an allergy...its an autoimmune response and it wont go away. The diet has to followed 100% to stay healthy.

3. I dont think its worth it to go back on gluten if her symptoms are severe. The biopsy is NOT a guaranteed answer either....there are lots of false negatives. Also 3 months is usually the amount of time gluten should be in the diet before testing. She could have Celiac and still have negative biopsy and have suffered for nothing.

4. Enterolab does test for the 2 main Celiac genes. If she HAS a gene it still doesnt mean she has Celiac...only that she is susceptible to it. I would say if she had the gene, the symptoms and positive anti-gliadin antibodies (which she hasnt been tested for) then its likely she has Celiac. Enterolab also tests for seperate gluten sesitivity genes. Positive test results and gluten sensitivity genes also means no gluten for life. The treatment is the same regardless.

In my opinion it's not something she's going to outgrow.