Other Causes For Cd Symptoms?

[gigimom]

I have 3 kids who have been tested for celiac disease. All had very high AG IgG. Only one had a positive biopsy. We did the HLA gene test through Kimball Genetics. No one had DQ2 or DQ8. Neither did my husband or I. I probably will try to go through Enterolab to see if we have gluten sensitivity genes (although the medical bills are really adding up). I actually asked an expert in this field about our situation and he said to be careful because "all that atrophies is not celiac disease." What I want to know is if anybody has heard of any other factors that can temporarily cause a sensitivity to gluten (or other allergens) such as exposure to molds, etc. The kids have been gluten-free (except one) but the symptoms were so mild to begin with that I keep wondering if we are barking up the wrong tree. I'm afraid that they may have some silent form of gluten sensitivity and don't want them to have unnecessary damage by putting them back on gluten. I'm also worried that the doc that we have seen isn't being thorough enough to check out other possibilities.

My father, who is a physician, and willingly admits that he knows virtually nothing about celiac disease also says to be careful that the dx wasn't made too quickly. He says that the saying "if you have a hammer, everything looks like a nail" may apply in this dx. I'm confused, concerned and just want to be sure that I'm not doing the wrong things with my children.

[gf4life]

Hi Gigimom,

I do agree that the diagnosis should not be made too quickly, but there is also no harm in keeping the kids off gluten while you figure out what to do. If they are not gluten sensitive, then it will make no difference, but if they are then the diet will benefit them greatly.

My kids all three also tested positive for IgG only. We opted out of the biopsy, and started the diet. We did have gene testing done through Enterolab, and one of the three had DQ2 (as do I), the other 2 kids have the gluten sensitivity genes. (my signature lists what genes we all have)

All of the kids were very small for their ages, and have grown significantly since being gluten-free. My daughter was almost diagnosed failure to thrive at 1 year old, and was always tiny. Now at 6 years old she is one of the tallest kids in her grade! My boys have grown alot too, but my daughter is shooting up like a weed. I have been told that the boys will have a major growth spurt as teens, whereas girls tend to grow faster at a younger age. It sure seems like they are growing at more "normal" rates now.

They have stopped having problems with their other symptoms also, which varied per child from behavior issues, vomiting, diarrhea, stomach pain, bone pain, headaches, severe moodiness, dental problems, etc. They still have weak dental enamel, but they have gotten fewer cavities and had less dental work since going gluten-free! I am excited about that.

You need to do what feels right for your family, regardless of what others (even respectable doctors and parents) think or say about it.

If you do choose to gene test with Enterolab, I highly recommend them. I think the gene test alone is about $150 each, whcih is actually a relatively inexpensive price, but is sure does add up when you have a larger family.

God bless,

Mariann