Overwhelmed

[butterfli523]

I'm not sure where to start and I don't want this to be a novel... So here goes...

My 9yo daughter has been seeing a therapist on and off since she was 5. She has problems expressing her emotions, is easily irritated, has extreme moods swings, lashes out verbally, blames everyone but herself when things go wrong (which according to her is most of the time), has low self esteem and on countless occasions has made remarks about how she thinks everyone hates her and wishes she was dead. Her only physical symptoms are chronic stomaches and headaches.

A few months ago her therapist decided that she didn't need therapy any longer and that her behaviors were age appropriate. Myself and those around me did not agree with this opinion. A friend of mine (who is a nurse) suggested a new pediatrician and child psychiatrist so we made an appt with the pediatrician and are working on getting an appt with the child psychiatrist.

At our appt with the pediatrician she listened to my daughters history, did a physical, and said that we needed to start her on a preservative, additive and dye free diet. She said after a month on this diet we would discuss and explore what else we could do to help her. She also said that there is a strong correlation between the preservatives, additives, dyes and mood disorders in children. The pediatrician said that until we looked at food as a cause for the headaches and stomaches we couldn't rule them out as symptoms of whatever mood disorder she might have (if her problems aren't all food related). The pediatrician also said that she needed to be on a daily multivitamin that is high in B vitamins because this can help with mood disorders. Additionally, she said that she should take fish oil daily.

The pediatrician also sent us to have a blood draw. At the time she said that there was the possibility that the blood draw would come back completely normal or that it might show problems with certain foods or vitamin deficiencies. I was completely shocked when the blood panel came back saying that she has low iron stores and vitamin D and that she had tested positive for gluten and casein intolerance, with the following results.

Gliadin antibody (IGA) 12, which is listed as equivocal.

Gliadin antibody (IGG) 44, which is listed as high positive.

Casein (IGG) 21.9, >less than 2.0

Also, the lab results show:

Maize/Corn 5.1, >less than 2.0.

Egg White 4.3, >less than 2.0

Soybean 8, >2.0

The pediatrician said she needs to try gluten free for six weeks and we will discuss at her recheck. I asked about taking her off casein and she said she likes to add/remove things one at a time. I didn't ask about corn, egg, or soy, but the numbers are higher than 2.0, so doesn't that indicate intolerance to those items as well? Or does the number need to be higher like the 21.9 for casein?

I have probably spent 10+ hours reading on these forums and while it has been so incredibly helpful it has also been incredibly overwhelming! Thanks to everyone who has shared their stories and such helpful information for newbies like myself who are limited in our knowledge and just starting to figure things out.

Sorry that this ended up so long

[Roda]

I would request the rest of the celiac panel which incluces IgA and IgG tTG and maybe the newer DGP tests. It sounds like you have a very smart new pediatrician. If you are wanting a scope/biopsy then she needs to stay on gluten until that is done. It is your choice to do it or not. Or if you are alright with what you have then go gluten free. It sounds like you may have found some caused for your daughters symptoms. Welcome to the boards.

[mushroom]

Hello, and welcome to the board.

I am so sorry that your daughter has been experiencing all these problems for so long. It is true that very many of the kinds of problems you describe are food related and I am pleased that you have a doctor who recognizes this. That being said, I would really have liked to see her run a complete celiac panel on your daughter rather than picking and choosing a test here and there. The panel consists of the following tests:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• DGP (deamidated gliadin peptide)
• Total serum IgA

Your daughter's pediatrician ran the first two of these tests, but these are the most non-specific for celiac disease. Her IgA could have been low because she did not run the last test to confirm that she produces normal quantities of IgA. The other three tests are more specific for celiac disease, especially the newer DGP in children. I would ask her to run the rest of the tests before she puts her on a gluten free diet, because you have to be eating gluten at the time these tests are done for the results to be valid. This is because healing begins to take place immediately upon the withdrawal of gluten. If she later wanted to run these tests she would have to go back on gluten for 2-3 months which may not be a pleasant experience for her if she experiences improvement without gluten.

While preservatives, dyes and additives are a big part of food intolerances (think msg for example), gluten can also cause all these same problems, including neurological and behavioral symptoms, so it is important to rule gluten out before tinkering around the edges of diet, IMHO. Once you get the gluten problem sorted it is time to start thinking about the other things, from my perspective.

[Jestgar]

What Roda and Neroli said about the testing.

Each number is relative to it's own standards, so if the number is higher than the baseline they give you (2, for most of yours) then it's considered positive.

Removing things one at a time is a good approach. Gluten is a very common offender, and those tests are considered more sound, so it makes sense to remove that first.

Casein is also a common problem, so that would probably be the next one to remove.

The problem with removing everything, is that the food allergy tests aren't very accurate. You could end up limiting her diet for something that doesn't cause her problems.

This sounds like the most amazing pediatrician in the world. Congratulations.

And welcome to the group.

[butterfli523]

Thanks for all the quick responses!

So, I was wondering about all of the other tests, based on what I have read on the board thus far. My daughter has been gluten free for one week. Is that long enough to throw off the results of all the other tests? I can call the pediatrician Monday morning to see if we can do the other tests. By then she will have been gluten free for 10 days... I'm not really sure what to do at this point.

Also, she hasn't actually been 100% gluten free. She has had gluten twice in the last week. Once was due to my own ignorance and once when she snuck some of her sisters crackers. Since we are so new to this I'm not freaking out about it or anything. I guess I'm just wondering if since we just got started and she has actually ingested gluten if the other tests would be reliable, without having to wait 2-3 months on gluten to see the results.

Thanks!

[Skylark]

Put her back on gluten until testing is done. One week gluten free plus a couple cheats isn't enough to change her celiac panel results.