4 Yr Old With 3 Positive Celiac Panels - No Symptoms

[CrysK]

Hello -

My 4 yr old dd was dx'd with T1 in July and they did a routine celiac panel on her which came back positive. However, she is symptom-free so the Pedi Endo decided to do the panel 2 more times just to be sure, which both came back positive.

We now have an appointment in December with the GI specialist to discuss what happens next. I know the only way to truly diagnose celiac is with a biopsy but we really don't want to expose her to something like that unless truly necessary.

So I have a couple of questions. First, is it possible for her to have 3 positive celiac panels but NOT have celiac? If so, what would the odds of that be? Second, would it make sense just to go with a gluten free diet and skip the biopsy? The only problem with this is that because she's asymptomatic, we won't see a difference if the diet is "working".

Any other suggestions?

Thank you in advance!!

Crystal

[nikki-uk]

First, is it possible for her to have 3 positive celiac panels but NOT have celiac?

I would say NOT ....false negs are very rare - add to the fact that she has Type 1 diabetes and I'd have to say she absolutely has it (celiac disease & T1 are genetically linked)

There are some T1's on this board who were asymptomatic and were picked up by routine screening

The biopsy is a personal choice ...and as long as you are sure you can implement the diet without the 'gold diagnosis' then don't bother with it.

You say you wouldn't know if the diet is working - but what you will see is (hopefully) her blood sugars easier to control

Good luck

[Darn210]

I would say NOT ....false negs are very rare - add to the fact that she has Type 1 diabetes and I'd have to say she absolutely has it (celiac disease & T1 are genetically linked)

There are some T1's on this board who were asymptomatic and were picked up by routine screening

The biopsy is a personal choice ...and as long as you are sure you can implement the diet without the 'gold diagnosis' then don't bother with it.

You say you wouldn't know if the diet is working - but what you will see is (hopefully) her blood sugars easier to control

Good luck

What she said . . .

My daughter's GI doc thinks that it will be a matter of time before a positive blood test is all you need because you just don't get false positives . . .

(Edit: oops . . . said negative meant to say positive but I've fixed it now )

[Green Eyes]

Hello CrysK,

My information is my opinion - take it as that. I believe your daughter has celiac with the support of the positive blood work. If my child were 4 years old, I would not put him thru the biopsy, but I would begin a gluten free diet immediately. There is a world of information on this website as well as very educated celiacs. Depend on them - they are wonderful.

I'm still in the learning stages as well, but it is becoming second nature. I also was asymptomatic. Now that I am gluten free I know when I have had gluten. That was one of my concerns in the beginning. BUT - you will know. Even though there are no outward symptoms of celiac there is still damage being done on the inside. The longer your daughter continues to eat gluten the more damage will be done. Consider yourself fortunate that you have been able to find this without the numerous ailments that go along with celiac. By eating the gluten free diet your daughter can always be healthy!!!

Jennifer

[ek327]

I have to disagree with the previous writers. I think the biopsy is the best way to go.

primarily to determine if there is damage, and what extent. My 7 year old had it, and it really wasn't so bad. she went to sleep, and when she woke up, it was done and we had our answer. In addition, down the road, there will be no question as to the diagnosis.

I know it is invasive and all that, but I would recommend the diagnosis. information is always better.

[happygirl]

It may be particularly useful to have the testing done, esp if there are no symptoms. Having it 'definite' in your mind may help with adherence to the diet.

[ShayFL]

I agree that the biopsy can be a good tool to help you adhere to the diet. But keep in mind that you CAN have Celiac with POS bloodwork, but the biopsy can come up NEG because the damage is not significant enough yet to show villi damage (or they didnt take enough samples or in the right places as damage can be patchy). BUT SHE STILL HAS CELIAC based on the blood. Since she does not have symptoms, it is very likely the villi will seem fine. BUT SHE DOES HAVE CELIAC. If your decision about a gluten-free diet will be based entirely on the outcome of the biopsy, you could make a grave mistake. You cannot ignore 3 POS blood tests. Especially since so many children under 6 with Celiac cannot get a POS blood until they are older. The fact that she shows POS at 4 really says something. IT IS CLEAR.

What posters meant to say is that there are rarely "false positive" and not "false negatives". "False negatives" are actually quite common. "False positives" are not common.

You should ask for genetic testing for your DD. And then for you and DH. This is another piece to the puzzle.

[Guest Mommy2aiden]

having a deff DX may be helpful with things like getting the school to provide a lunch ( which they have to) and i hear that you can even write off the special foods as medical if you have a DX

[Darn210]

What posters meant to say is that there are rarely "false positive" and not "false negatives". "False negatives" are actually quite common. "False positives" are not common.

Oops . . . that was me . . . I went back and fixed it. Thanks Shay.

Just a little of my experience followed with my opinion:

My daughter's endoscopy went extremely smooth. At that time, we weren't even considering Celiac, we were looking for something else. So, while the doc took a couple of biopsies, he didn't take that many and "officially" she did not have villi damage. However, she did have reduced sugar processing. Her primary GI doc diagnosed Celiac with a positive blood test and the reduced sugar processing. The second opinion doc concurred just because of the blood test.

Now for my opinion . . . I was in major denial during the whole process. As it turned out, the blood test was taken while she was "out" during her endoscopy. If the blood test had been first, I probably would have wanted the endoscopy just to help me come to terms with it. As I look forward (said sarcastically) to working with the school system, I would want a doctor's official diagnosis behind me (if I could get it) to help me fight what ever battles I get into. If your doctor is willing to give the diagnosis without the endoscopy, that's something else to consider. There's no right or wrong answer. Do what you've got to do to put it to rest in your mind . . . 'cause if you're not "buying" the diagnosis now, you're not going to be able to "sell" it to her later.