When Will This End?

[RogueGinger'sMom]

My son (18 months) has had two positive TTG blood tests as follows:

Test 1 : 78

Test 2 : 37

(Negative results are typically <19)

He has also had genetic testing which, came back positive. He also suggested that we (the parents) get tested too.

We went to the GI today and he wants to do a biopsy.

The doctor said that at my son's current levels, damage may not be seen in the scope and/or biopsy but, he highly recommends it anyway.

I am getting frustrated with this whole process. What is even more frustrating is that the biopsy may not even tell us anything however, I understand doing it would create a ''baseline'' for further testing if it was needed in the future.

I guess I am just a little tired and emotionally exhausted from dealing with multiple health issues (eczema, peanut allergy, recurrent ear infections...thus, tubes, unilateral symbrachydactyly and a lipoma on his spine)

What should I expect from this biopsy? Monkey Man has already been sedated for an MRI and did not react badly.....

Has anyone else experienced extreme behaviour while glutenizing their children in preparation for these tests?

( I know my son is almost two and tantrums as well as a little attitude are common but, sometimes I tell you, my little guy can be a real monster..and definitely lives up to the reputation that has been placed upon red heads........lol)

I know this is due to being physically uncomfortable (bloated and gassy) but, WOW it is challenging at times.

Also, are there any parents out there who has a child with eczema and celiac?

I'm just wondering how common that is as both are immune system related.

-Amanda

[Mother of Jibril]

Welcome to the group!

I'm sorry that you and your son are having such a hard time. My son gets terrible eczema from casein (all dairy products) and corn. I refuse to try gluten. Casein gave him green diarrhea and made his intestines bleed Have you tried removing any other foods from your son's diet? The most common problems are dairy, corn, soy, and eggs.

IMO, if you can figure out all the foods your son is reacting to, a lot of his other problems (eczema, ear infections, behavior issues) will go away.

Do you have him in daycare? How is everyone doing with the gluten-free diet?

[dilettantesteph]

My son and I both have celiac. He was diagnosed at age 10 and I was diagnosed at the same time. I don't think that horrible behavior comes from feeling bad. I think that celiac affects the brain to make you horribly unreasonable. I see it in my son and I saw it in me. I didn't even realize how unreasonable I was being until I got off gluten. That is the first way to tell when my son gets accidental contamination. All of a sudden life is horrible, everyone treats him unfairly and badly, school is horrible etc. Before his diagnosis he was constantly beating up his big sister. After gluten free, no longer. He had behavior issues at school etc. All gone. He did have excema too. Once covering his whole body. The dermatologist never mentioned celiac, but I wonder now if it could have been DH and he both could have been diagnosed 8 years earlier when that happened. He was about 2 at the time.

You are going through a tough time with your son. It is really hard to have a sick child. When you are successful with the gluten free diet things will be much better. It took us about a year to figure out the diet and heal, but things were much better after 6 months. Hang in there.

[ravenwoodglass]

The choice of whether to biopsy or not is really up to you. Was your son off gluten for a bit? Was he doing better? Are they making him do a 3 month gluten challenge for the biopsy? With his blood tests combined with the genetic tests that were both postive he really has already been diagnosed. The choice of whether to put him through the challenge and the biopsy or to just get him on the diet is up to you.

Also the previous poster was correct about gluten being a neurotoxin for some of us and the behavior issues do come from that not from feeling sick.