Advice Needed From Anyone With Knowledge Of Cd

[KylesMom]

Hi,

I am new to this board and we are in the process of getting my 2 year old son tested for Celiac. His bloodwork came back 2/4 positive. His gluten and wheat level were moderate to high. He has had diarhea on and off for the last year and that's why I took him to a specialist. The doctor has said that there is the possibility for this to be a false positive and to do an endoscopy to rule it out. His endoscopy isn't scheduled til the end of June. I am going crazy not knowing if he has it or not. The only symptoms he shows is that he has diarhea every 6-8 weeks and it is always the same consistency and part of the bloodwork has come back positive. She said the bloodwork from his tissue came back normal. From what everyone in both of our families know is that nobody else has celiac disease (I know that we can have it w/out any symptoms). I am just looking for any help with your experience and knowledge of what to expect in the next month. Am I psyching myself out by telling myself this is a false positive or should I be prepared for the truth that he may have celiac disease. I know your not doctors but any input would help! Thank you!!!

[KaitiUSA]

Which tests were positive? Did he have the tTG or EMA done? These are very specific tests for celiac.

About his symptoms...he doesn't have to have any at all in order to have celiac. Some people don't get any symptoms and some do.

There very well may be celiac running in your family but nobody knows. Celiac is very common but underdiagnosed.

You may want to have a gene test done on him. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene.

[Carriefaith]

She said the bloodwork from his tissue came back normal.

Is this the tissue transglutamase test? This test is highly specific for celiac, however, you can get false negatives, and my grandmother was only 1 point above normal or something on this test and she had intestinal damage.

His bloodwork came back 2/4 positive. His gluten and wheat level were moderate to high.

I am no doctor but it appears that your son may have issues with wheat/gluten and he may or may not be celiac.

I know how annoying it is waiting for tests and whatnot... Trust me! I had to wait a few months for my biopsy (Canadian health care may be free, but since there is no competition we don't always get immediate service) While I was waiting, I just did some research on the gluten free diet and celiac to prepare me... and it paid off in the end.

Try not to stress too much, the gluten free diet is a lot of work but with time it becomes easier, and we are always here to help!

[Guest nini]

He said that it could be a false positive????WHAT??? there is no such thing as a false positive, and an endoscopy in a small child isn't likely to show much if any damage... If the blood tests were positive AT ALL, he has celiac. IMHO YOU DO NOT NEED TO SUBJECT HIM TO THE ENDOSCOPE. IF you do, keep in mind that there may not be any damage YET that shows up, but that does not rule out Celiac.

There can be false NEGATIVES on the blood test, but never a false positive. I'm sorry but that is just crazy.

I have very strong opinions on this and I'm sure there are some that will disagree with me, but the endoscope is NO LONGER THE GOLD STANDARD for celiac diagnosis. It was considered so as recent as 4 years ago, but more recent information has proven that thinking to be outdated and dangerous. IF you have a positive result from the blood tests, that is enough to start the diet and stick to the gluten free diet religiously and if there is positive dietary response, that is diagnosis enough.

[Carriefaith]

"Tissue Transglutamase may give persistent mildly elevated results in the absence of disease"

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I don't know why and it could be wrong.

Also you can have false negatives with the Tissue Transglutamase test:

"The results with this method can be normal in patients with IgA deficiency in the presence of Celiac"

That is why I think a biopsy is important. If you are deficient in IgA a biopsy would be necessary to diagnose the disease. I am not a doctor, but for those who can't have endoscopies or prefer not to have them, then high values on the blood test and a positive dietary challenge would probably be enough.

KylesMom - in your case, I think that 2/4 postive blood tests is enough to say that your son probably is intolerant/allergic to wheat/gluten or has celiac.

[KaitiUSA]

https://www.celiac.com/st_prod.html?p_prodid=1160

This is an artictle about tTG tests possibly taking place of a biopsy in kids.

The tTG test is a very specific test and the chances of this being false are very slim.

Yes, there are cases where someone may be IgA deficient and therefore have their tests negative.

On the other hand though, biopsies can do the same thing, they can miss damage if it is sporadic or if there is no damage yet it can miss a diagnosis.

It's really a matter of what you and your doctor think what is the best way to proceed.

A gene test in that case may be a bit helpful because that can identify if you carry that gene to predispose you(that would not diagnose you but it would give at least a bit of insight)

In this case there are 2 tests high so I would figure there is something going on. Do you know which tests were done?

[key]

Where do you live and what doctor are you seeing? Doctors take the diagnosis of Celiac very seriously. It is a diet for life and so I think that is why they like to do the biopsy, but I have to agree that in a child there may be no damage and if he has positive blood work at all, he probably has it.

I think the endoscope is up to you. Personally a positive dietary change with positive blood work would be enough for me. My son's doctor just diagnosed him gluten allergy, because of the weight he gained being on the gluten-free diet and he no longer had diarrhea. I don't think this is how he would normally do it, but wheat makes him so sick, he can't eat it in order to have a biopsy. HIs blood work was normal, but had one level high, but the least sensitive to celiac. Blood tests in small children are inaccurate sometimes for negative celiac disease. So do what is best for your son. I hear the biopsy isn't that big of deal, but if it comes back negative, I would disagree and put him on the diet anyway. Just my 2cents!

Monica

[Guest nini]

in my daughters case, I had already been definitely dx with Celiac, so knowing that there was a genetic predisposition played a huge part in her dx. We did not do the endoscope on her because to keep her on gluten for one more day knowing just how sick it was making her didn't make sense to me or her dr. Watching a sick child waste away to nothing is a painful thing to do, and I obviously have very strong feelings about this. But to me, even with inconclusive blood tests, how she responded to the diet was THE most important diagnostic tool. NOW, if she had been on the gluten-free diet for more than a month with absolutely NO improvement, then of course I would have wanted to continue with testing to find out what was wrong with my child.

[Merika]

What is IGA deficient? Which IgA test? I see several on a recent test here....If anyone knows more on this, please tell me.

Merika

[Carriefaith]

In celiacs, the body sees gluten as toxic. When gluten is ingested, the body produces antibodies such as IGA that detect gliadin, which is a protein found in gluten.

Blood tests such as the tissue transglutamase test will test to see if there is a surplus of IGA in the blood. If there are higher than normal antibodies detected, than celiac disease is usually diagnosed. However,"Immunoglobulin A (IgA) deficiency is 10 to 15 times more common in patients with celiac disease (celiac disease) than in healthy subjects". If someone is deficient in IGA then other blood tests would have to be done.

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[chasesparents]

My son at 18 months old had constipation, an extended belly and major weight loss. Children's Hospital did the endoscopy first and his small intestines were FULL of ulcers. The blood test came next and was positive for celiacs. I know of no one on my husband or my side of the family that has celiacs. In fact I never even heard of Celiacs until it was brought up that my son had it. My son has been gluten-free for about 5 months now and has gained 5 lbs and is doing awesome !!!!

So if your child has celiacs, you definitly go through a big grieving period, but once you have the diet going and you see your child's improvement, you will do everything you can to make sure that your child does not feel the way he/she felt before being gluten-free. The gluten free diet can be inconvenient at times, but it really is not so bad once you figure things out. Promise !!!