Both my of DDs have recently been tested for Celiac Disease. While I don't have the numbers yet (coming in the mail), here is what I have been told.

Ellie - 3 years old
Celiac Test within Normal range (I know, numbers here would help).
TSH elevated 9.3
T4 Normal
Genes - DQ2 and DQ8

Symptoms - Constipation, Failure to Thrive
Previous Bx normal (12/05)

Kara - 13 years old
Celiac Test within Normal range
Thyroid Normal
Genes - DQ2

Symptoms - No GI symptoms, fast heart rate, mild hypertension. Testing was precautionary.

My question - what are the chances that Ellie does have Celiac with DQ2 and DQ8, elevated TSH and the symptoms that she has. My gut (sorry) says that she most definitely has it. But given a normal bx in Dec., how can we prove it?

I can't remember if your girls are already gluten-free or not. If you take them off gluten and their symptoms disappear, is that enough proof? From the reading I've done, severe damage can happen before the "gold standard" diagnosis...

Good luck!

No, neither one is on a gluten free diet. I discussed that with the GI when I agreed to do the tests and he stated for me NOT to put them on the diet in case we needed to do a bx.

I am extremely tempted to just put Ellie on the diet and watch her symptoms disappear , but I don't think the GI will be pleased with that. He is looking for a final dx on her.

As for Kara, he is leaving that completely in our hands. I will be discussing this more thoroughly with my DH when I get home tonight.

My gut is telling me to put Ellie on the diet, but with resistance from the doc, I don't want to screw up any further testing they want to do. As I am typing this, I am thinking that maybe the best thing to do is, when we get the results from the retest of the thyroid, sit down with GI and DH and discuss the ramifications of her going GF. A golden diagnosis is for the birds!

It is all so frustrating. I went through all this with my son and I really don't want to go through it again.

Are they going to run the thyroid antibody tests for Ellie? I don't know how common an elevated TSH is in a child, but I wouldn't be content to ignore that. What did they say in regard to this, or do you have to wait for an appointment to discuss it?

I had been very symptomatic for years when my thyroid disease was diagnosed. I was pretty much a lump of clay at the point I dragged myself in and asked to be tested because my sister had just been diagnosed. My TSH was something like 23, but my T4 still within low normal range. My thyroid was enlarged. My doctor treated me, of course. Some ten years later I asked for the antibody tests to confirm my thyroid disease was in fact autoimmune (something like 90-95% is), but I wanted to be sure....because of the autoimmune thyroid disease/celiac association. It was, with an anti-TPO of 913.5 (is that a strange number or what?). Ref range Children and Adults less than 2.0.

So, low thyroid function could definitely be contributing to the constipation and failure to thrive. AND... if the thyroid antibodies are present...it just might be early enough to reverse that with a gluten free diet. There are reports of thyroid disease reversing on a gluten free diet, if done early on. I wouldn't think twice about putting Ellie on a gluten free diet...I'd just do it. It's just food...no harm, possible gains.
http://jccglutenfree.googlepages.com...thyroiddisease

Did either of the girls have positive antigliadin antibodies (past or present testing?).

These doctors who think Celiac Disease is the end all and be all need to catch up with the research.... because I think the research is forging on to show that gluten sensitivity can cause problems in those who are seronegative with normal biopsies. And with your family history????

And with Kara... she is old enough that you might be able to explain the grey zone that the doctor's don't fully understand, and have her do a gluten free diet trial as well.

I suspect you knew this was the kind of response you'd get out of me.

I'd ask to have the thyroid antibody tests done if your doctor doesn't plan on doing it. http://www.labtestsonline.org/unders...es/glance.html

Cara

Thanks Cara,

I think that was the link that I was looking for, but didn't know it. I will ask about that. The girls have never had a positive antibody test. The numbers are always elevated BUT within normal range. I will have a better idea when I receive the actual numbers at the end of the week.

We spoke with Kara tonight and I asked her what she wanted to do before voicing my opinion. She wants to go GF!!! So that is what we are going to do.

I am going to wait for Ellie to go GF until I speak with the doctor. He might still want to do some more testing for Celiac and I don't want to mess things up.

I will let you know how the thyroid testing goes. Thanks - as always!! It is so nice to run things by the people here again!

Okay - so I thought I would post the actual numbers I had received over the weekend. I am bolding the items of concern. Let me know if you see anything else that I am missing. I put the normal levels at the end of each line so you would have a comparison.

Ellie:
IgG 3.9 <10.0
IgA 0.1 <5.0
TTG IgA 0.6 <4.0
EMA IgA Negative
Total Serum IgA 56 (normal 41-395)
HLA DQ2 and HLA DQ8 Detected

T4 9.1 (7.3-15.0)
TSH 9.13 (.55-7.10)
(Thyroid test was repeated, but we don't have the results yet.)

Kara:
IgG 5.0 <10.0
IgA 0.5 <5.0
TTG IgA 0.7 <4.0
EMA IgA Negative
Total Serum IgA 137 (normal 41-395)
HLA DQ2 Detected No DQ8

The doc didn't send me her thyroid numbers since they were normal.

I think Ellie's low normal IgA might be of some significance. How much, I don't know. Not that there is anything to do about it, that I know of, but it might mean she is more susceptible to general illness (esp. ear, throat, lung), autoimmune disease, and allergies.

It seems that way for my low IgA daughter, who hovers just above to just below the low range cut off. I don't think you'd see a doctor getting concerned about this result, but review this... and consider if she might lean toward some of the things mentioned. Michael is IgA deficient? I think it is a spectrum sort of thing, and that low IgA matters a bit too.

http://www.primaryimmune.org/pubs/book_pats/e_ch04.pdf

Cara

Yes, Michael is IgA deficient. I was wondering about that number. I read somewhere that they consider it a deficiency at 0.05. That would make her .05 away from deficiency. There is nothing you can do for IgA deficiency. You just treat the illnesses that come along with it. For example, her thyroid problem.

I am still suspecting CD in both girls though. Kara even mentioned to me yesterday that she has been feeling bad after eating her morning bagel. I can't convince her to go on a GF diet without the dr telling her to do it. Cara - didn't you have this problem with your daughter?

Another thing that I just thought of - When Ellie was 3 months old, she had a blood transfusion and responded amazingly well to it. I am curious how this has affected her issues right now. She was such a healthy girl for the first 2 years of her life. After she was 2, things changed starting with ear infections (she now has tubes) and then stomachaches, constipation, failure to thrive.

It makes you wonder what the heck was going on with her blood those first 2 years and if the blood transfusion did make a difference - postponing the inevitable maybe. Kind of like that IVIG therapy that the neurologist wanted to do on Michael.

Here is a question for the medical community - an IgA deficient person is also deficient in IgG, therefore making the serum tests ineffective for dx of CD - so why wouldn't the same be said for an extremely low IgA figure (someone 0.05 away from dx with IgA deficiency) - wouldn't the same guidelines apply when it comes to the IgG levels and therefore making the test ineffective for dx? You would think so. It is not cut and dry with the numbers as they would like you to believe.

A TSH that high in such a young child is bad. They suffer all sorts of developmental problems without a fully functioning thyroid. Is that getting treated now?

http://www.thyroid-info.com/articles/hypokids.htm