Need Some Advice And Input

[jem4152]

Hi everyone, I am new member. I am writing because my 2 year old has had chronic diarrhea off and on since he was 10 months old. He has been tested for celiac, but the results were negative. His IgA Serum was 24 with a reference range of 24-121 and his TTG was less than 3 with a range of less than 5 to more than 8. Prior to the test I had been restricting his diet of the obvious foods that would have gluten in them such as bread and pasta, but did not have him on a completely gluten free diet. The doctor said that was okay. He also had a scope done to see if he had celiac after being on a gluten diet for 2 weeks and that came out fine, but they found he has reflux. The doctor did say that he might be sensitive to gluten. What I am wondering is if it was ok that he had been on a gluten restricted diet at the time of the blood testing? I just do not know what to do anymore. When he was on the gluten restricted diet it seemed to help somewhat, but then his diarrhea started up again. We just had allergy testing done just over a week ago and have kept him off of all the foods he is allergic to and he has now been having issues again for the past two days. He currently is having gluten in his diet since they said the results were negative. What do you all think? I have no idea where to go from here or if his issues have anything at all to do with gluten. Any input would be greatly appreciated!

Michelle

[mushroom]

Hi Michelle, and welcome.

Unfortunately, you are discovering that there is not a lot of knowledge about celiac disease and gluten intolerance in the medical community, including how to diagnose it.

Let's start with his serum IGA, which was on the lowest point of normal. That means that he does not naturally produce a lot of IgA antibodies. If he were one point lower it would totally invalidate any IGA testing. As it is, it makes the IGA testing suspect and the IgG testing is normally used instead. His tTG was normal (did they do the IgG as well as the IgA version?), but you had been restricting his gluten intake, I am not sure for how long. Most doctors will tell you that this does not make any difference, but for a truly valid test it is recommended that a normal full gluten diet be consumed for at least 8 weeks before and up until the date of testing. Same holds true for the scope and biopsies, because with restricted gluten the body stops making so many antibodies and healing starts to take place in the small intestine. Two weeks is not long enough to redamage the small intestine.

If he showed improvement of his symptoms on the restricted gluten diet and then they recurrred with the full gluten diet, that is telling you something significant. The reflux finding is significant too, and is a symptom often experienced in the gluten intolerant.

I would not consider his testing to be adequate to diagnose him one way or other. First of all, he needs to have a full celiac panel, which consists of

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Of these you would not need to repeat the Total Serum IgA or the tTG IGA. The important tests to run would be the AGA IgG; the EMA IgG, and the DGP (IgA and IgG)., but these would only be valid if he had been consuming gluten for the eight weeks. This is if you want a definitive diagnosis for him. Bear in mind that the testing is considered quite unreliable in infants, and even in adults there are false negative tests, so at the end of eight weeks there is a possibility that he could still test negative on all tests, and be classified as gluten intolerant rather than celiac. This does not mean that his condition is less severe than that of a celiac, just that he does not meet the criteria for a celiac diagnosis, celiac being the only form of gluten intolerance that there is currently testing devised for..

Now, you are probably feeling quite confused at this point, and I don't blame you. You can read some more about testing here: Open Original Shared Link The IgG tests are run when people are low producers of IgA antibodies, and the DGP is a new test that is showing a lot of specificity for celiac disease. Many doctors are not familiar with it or where to get it done.

When you have thought about it and asked all the questions which will no doubt arise, and once you have completed all testing that you wish to have done, be sure to try him on a strict three-month period of the gluten free diet; you will then be able to asses for yourselves whether or not he needs to be gluten free.

[jem4152]

Thank you so much for all the information and validating what I suspected about his diet and his blood test results. I had no idea that there were so many tests that could be run since the doctor only did the two and had no idea that there was a correlation between gluten intolerance and reflux. The doctor had told me that it was just a bonus to the procedure. This has been so hard and I just want to get some answers.

Michelle