My Son's Blood Test Is In, Is It A Done Deal?

[VydorScope]

We already strongly believed that he has celiac disease because a week of gluten-free diet sloved all his issues, but the GI doc wanted to try the blood test since the endoscopy was not "typical" of celiac disease. The blood test was taken after a week on the gluten-free diet, because we did not know the doc would want a blood test.

The doc himself is out on vaction, but I talked to his nurse and his nurse said my sons "levels were sliglhty elevated". My son is 21 months old, in case that matters. She said the doc would call me back on Tuesday when he returns.

Since the diet worked, and his levels were "slightly elevated" after a week of gluten-free, is it a done deal?

Still waiting on my blood test results....

[KaitiUSA]

Tests may come back not accurate because of your childs age. When they are below 24 months old you can get false negative testings.

[VydorScope]

Negative? nooo... here let me try agian.

Endoscopy - Showed damage in the stomach consistant with a reaction to food, but nothing in the small intestin. Alone this result would have been inconsclusive.

gluten-free Diet - Showed almost miracle level of improvement. Dieheara gone, sleeping agian, no more waking up 4 hours after eating screaming in pain, etc. All symptons seem to be cleared up a week later. Off all medications.

Blood Test - "Slightly elevated levels" after being gluten-free for about a week.

Age - 21 months old, so heals very fast I would think certinly much faster then an adult.

His doctor is away on vaction till early next week. Does this sound like a done deal to y'all that he has celiac disease?

I plan to call my doc today and whine about not having my blood test back yet....

[celiac3270]

Endoscopy -- In youngsters, since they have a smaller intestine, they usually show complete intestinal damage (whereas in the longer adult intestine, it's usually in the upper and lower regions of the intestines. However, you don't need villous damage for a diagnosis--you might have caught it early enough that there was no damage or the intestine healed remarkably, or there was very little damage that was healed in that one week period.

It's inconclusive, but certainly not negative. An endoscopy can only really be taken seriously if it comes back positive--but a negative happens all the time to people that actually have celiac disease.

Blood test -- slightly elevated...that probably means in the borderline range. I think it's overall inconclusive here, but with improvement on the diet and having been on the diet through the testing, I would put her on a gluten-free diet. Some here didn't have any tests done, but feel so much better eliminating gluten, so just for that reason, be it celiac disease or a wheat allergy, they eliminated it. That's what I would suggest.

[Boojca]

It's me again. Sounds to me like it's a done deal. If you aren't sure, I'd stick with gluten-free until the results come back for sure. However, keep in mind that bc your child is so young, even "slightly elevated" is important bc they are so young and haven't been ingesting gluten for years and years and years to cause serious damage like adults. Another important thing to remember is that you were gluten-free BEFORE any of these tests, and again bc kids are so young and still growing their insides heal much faster than adults so results would've been skewed by that. When my sons blood test came back positive and we set up the endoscopy appointment my doctor said not to go gluten-free even though it was only 4 days bc it would effect the results. And this guy is one of the top ped. GI's in the country, so I trust what he says.

So, I'd say you probably have your diagnosis. The most important thing, though, even if your doc says it's not celiac disease is that you have noticed remarkable turn-around since going gluten-free, and what's most important is your child's health not the "official" diagnosis. So, if it's working stick with it!

Bridget

[connole1056]

My pedi Gi said NEVER go on a gluten-free diet before a concrete diagnosis of celiac disease. The reason is that if a biopsy is done on an intenstine that has healed because of a gluten-free diet the result will be a false negative. Some intestines heal much faster than others, so one cannot say going gluten-free just a short time before the biopsy will not ruin the results.Every group I have contacted claims the biopsy is the "gold standard" of tests used in diagnosing celiac disease. They all say what I just said as well. I will tell you thatmost but not all, the groups I deal with are generally located in the New England area, in case it matters to you.

Apparently many people have been told it is a waste to test a child under two. This was not what my doctors told me, and my daughter was tested very soon after birth because her sister is a celiac. My doctors did not want her suffering or damaging herself if she did have celiac disease and I certainly didn't.

I think this proves that celiac patients are like other patients who cannot get their doctors to agree. It seems both sides of the issue have merit, but if my child was having symptoms I would get a biopsy done and if it came back negative have the doctor investigate other conditions and diseases. There are many people claiming to have celiac disease simply because they feel good on a gluten-free diet. I would never trust a self-diagnosis. I am all for feeling better, don't get me wrong, but these people are doing themselves a disservice if they do not pursue other avenues. They could have other medical problems that are being overlooked and getting worse because they think the celiac disease diagnosis is correct. This happened to my nephew and it was very hard on him and his parents and all who love him. I would never want someone to suffer from anything masking as celiac disease because of a misdignosis. So although the gluten-free diet may seem the way to go PLEASE find out for certain what is causing your child's symptoms! If not celiac disease keep in mind that it could be another immune diseases. Auto-immune diseases often get "mistaken" for one another. I have one, my sister has another and one of my daughters has another and my nephew has yet another! Aren't we the healthy family? I was diagnosed first then my daughter. My sister and nephew were both thought to have celiac disease although they do not. It can be a long time getting diagnosed, but definately worth it.