Diagnosis

[parkerrmmc]

Hi! Let me start from the beginning.....my 20 month old son began having diarrhea 4-6 times a day, 7 days a week back in October 2004. We kept taking him into his doctor, but they continued to tell us that he must just have a virus. Finally, at his 18 month checkup in December, his pediatrician sent us for allergy testing. We had the allergy testing and found that he is allergic to egg, wheat and milk. Almost instantly after removing these three from his diet, the diarrhea was less frequent. Some days now he won't have any bowel movements and some days he might have 1, 2 3 or 4. They are almost always soft or loose (he's only had 2 formed bowel movements since last September). We took him back to his pediatrician at the beginning of February and they tested some stool cultures. All of these came back completely normal. In the middle of February they sent us for a sweat chloride test to check for Cystic Fibrosis--which came back negative and they did bloodwork, including a check for Celiac Disease. I must also tell you that his doctor has been puzzled by the fact that our son continues to gain weight throughout all of this - he is a big boy weighing a little over 30 pounds at 20 months old. I received a call from the doctor on Monday saying that his Anti-Gliadin level was elevated and his alkaline phoshatase level was 5 times the normal level. He said that it was Celiac Disease. Since, Monday I have been doing extensive research and continue to be more confused. In everything I read, it says that a person seeking prelim diagnosis must be consuming gluten. What does this mean about my son's elevated Anti-gliadin level since he has been on a gluten free diet for almost two months? Also, shouldn't his soft and loose bowel movements have stopped on a gluten free diet by now, if he is in fact a celiac? We have an appointment with a pediatric GI doctor in Louisville, KY at the end of this month, but now I'm having doubts that he is in fact a celiac. Any information would be greatly appreciated. Looking forward to all your responses.

[KaitiUSA]

What does this mean about my son's elevated Anti-gliadin level since he has been on a gluten free diet for almost two months?

Has your son been off of just wheat? A gluten free diet requires being off of wheat,rye,barley, and oats. That could be why your son is not getting better yet. If he is a celiac then he will not get better while he is still on gluten.

At first it is hard to because there are so many slip ups because you think things are gluten free when they are not. So many foods have gluten and don't have it on the label. For example..gluten can be hidden under modified food starch etc. so we have to call companies to make sure the product is gluten free. Even vitamin E can be derived from wheat and many things you would never even think of. Kraft is a brand that if you don't see wheat,rye,barley,oats on the label then they are safe because they won't hide it.

You also do not have to lose weight with celiac..some actually gain weight. Some don't even have any symptoms.

If your son had elevated levels in his blood then I would put my $ on it that he does in fact have celiac. If your doctor told you he has celiac consider yourself and your son lucky because this is a very underdiagnosed disease and alot of doctors do not know much about it.

Good luck

[inmyhead]

I do not know if I will be any help, but I am going to try. It is very possible to have a positive Anti gliadin (IgG) and not have Celiac Disease. Only 2% of people who only have an elevated IgG actually have celiac disease. Only 12% of people who have only an elevated IgA actually have celiac disease. If a person has both an elevated IgG and IgA, they still only have a 32% chance of having celiac disease. The most accurate blood tests for celiac disease are IgA-tissue transglutamine antibody assay (tTG) or the IgA-antiendomysial antibody assay. If these test come back positive there is a 98-99% chance you have celiac disease. The problem with these two test is that they can return as a false negative in children under two years old. The gold standard is still a biopsy. The GI doctor uses the blood test to determine whether or not to do the biopsy. Chances are if your son is wheat free, even if he is consuming barley and rye, he may not be getting enough gluten to do severe damage to his intestines. My daughter is also allergic to wheat, dairy, and eggs. She had the endoscopy/biospies done, but the test came back negative. I still suspect that she may have Celiac Disease, but I can not have it confirmed at this point. We are still trying to find out what makes her tummy hurt. I hope that your GI doctor can figure something out for you. Your son may have other allergies, celiac disease, or some other problem. Good luck. You have come to a great place. The people on this board are always very helpful. If you are wondering, my statistics come from my daughters pediactric GI doctor. He is very highly respected in our area and even spoke at my Celiac support group. I hope this helps you a little bit.

[mat4mel]

inmyhead, could you please tell me where you got those statistics-- my dd had both antigliadin igg and iga positive but all others were negative-- i did a lot of reading and it was over 95% chance of celiac with both of those positive. oh wow now i just read your email again and it says from your child's GI dr. that is very interesting-- i wonder what else could cause those #'s to be elevated? i have heard that the iga part is very specific.

[KaitiUSA]

I have heard completely different stats. I have heard if they both are positive chances are close to 95-98%. I had my IgG positive and my IgA negative but my tTG was positive. I was told that the tTG test are better for testing for celiac. But they were convinced I had celiac even when I had my first blood test done where only my IgG tested positive(before the in depth testing) I have also heard that IgG levels may be elevated if one has had the Epstein Barr virus(EBV) Has anybody else heard this? I am not sure if this is correct. That would stand reason why mine was high because I had mono a few years ago. I have heard that the IgA test is specific for celiac and if that comes back positive then there is a high chance you have it. With them both I would definately think you would have celiac.

[inmyhead]

I wish I knew more details to tell you. Our GI doctor is well trained in Celiac Disease. He studied at a university that at one time was the only one in our region that even diagnosed celiac disease. He is one of the only GI doctors in the area that even specializes in it, but he will only see children. I do not want to misquote him, but I believe he said that IgG and IgA could also be involved with allergic responses (I can not remember for certain.) He did say that many things would cause the levels to be elevated. The statisics I actually wrote down, but the details I did not. The entire purpose of his presentation at our Celiac meeting was to explain the testing. Another problem with IgA is that not everyone produces IgA (IgA Deficient), so in some people they would test negative and could still have Celiac. Honestly, I knew that I went out on a limb giving statistics, but he is a very well respected GI doctor, and I believe he knows what he is talking about. He has diagnosed quite a few cases of Celiac, but he has also seen patients who have been put on a gluten free diet based on IgA and IgG levels when they did not have Celiac Disease. He feels that a gluten free diet is great for Celiac children but not great if the child does not have a gluten intolerance. I guess when you are talking about a life long commitment, it is best to be really certain, especially when it involves children. I am taking my daughter in for her follow up appointment on Monday. I will ask again about the statistics, and I will let you know what he says.

[snoopylian]

check finerhealth.com see if that helps any. I've used Entero Labs and know many people who have used them.

[Crishelle]

You know, all the statistics in the world couldn't help you right now, because they are still just slightly educated guesses. This is still very new as far as accurate research in the medical community. Every expert and doctor seems to say something a little bit different. The proof is in the pudding. I never got a positive diagnosis; however, when I went on gluten-free diet, all my symptoms went away...including manic-depressive episodes, constant migraines, and SEIZURES I was having several time a month!!! Don't just take him off of wheat, but all gluten for a couple of months and see what happens. Also, gluten hides! If you need a more detailed list, let me know....You have to know how to read the label (you have to read the label on everything you think you don't have to worry about) and sometimes you still have to call the company.

[Nancym]

A few things pop into my head. One is that your child is getting gluten from cross-contamination if the rest of your family is still eating gluten. Another is that your child might have other sensitivities. Consider dairy and nuts and possibly eggs too. A good elimination diet might help you figure that out. Gluten is also passed in breast milk.

85% of my intestinal symptoms went away on gluten free but there's still something bugging my gut and even now, 2 years out I'm still figuring it out. Dairy was one, I think nuts are another problem. I go on an all meat and veggies diet to figure it out and slowly add stuff back in.