Please Help!

[7mommy]

My 10yo dd has been having problems with her belly for at least 5 months now. She is very thin and the shortest kid her age. She was dx 3 months ago with hypothyroidism. I have Hashimoto's and I suspect the same with her. She eats gluten and wheat.

We also have a 2yo who has food allergies (including wheat). He does not eat wheat, but we are not strictly avoiding gluten. He gets nasty, itchy blistery rashes on his bottom (the do not ooze, but bleed). It has a definite pattern of progression and usually goes away eventually. It is NOT yeast. He is our 6th child and I know what yeast is. His ped thought it was impetigo, but no one else has ever gotten it from him and it does not ooze. It also goes away on its own. While researching this, I ran into Celiac and DH. This is when I began suspeccting problems with dd.

Over the past year, she has begun problems with her thyroid, has poor tooth enamel, gets frequent sores in her mouth and on the corners of her mouth, has begun to complain about her belly. She frequently says she is hungry, but other times will not eat because she feels nauseated. Her belly either hurts her or feels "funny." I do not think these are female issues. She is VERY short and only 50 lbs. She is no where close to puberty as far as I can tell. She gets what she calls ant bites, but in strange places like her hands or arms or belly when she has not been outside. Now it is cold and no ants are out and she is still getting "ant bites."

When she went to her well visit, I asked for bloodwork for Celiac to be done. I believe that they did a Antitransglutimase (sp) test which came back normal. I do not know numbers. I was going to leave it at that, but I read recently that this test can have a false negative. Is this true? If so, how common is it? I am at my wits end. My dd is feeling miserable and I do not know how to help her. She is not normally one to complain. I am having her write down a food diary and elimination record. Apparently, she feel bad every day. I know about it when it is very bad and she lays on the couch all day. My dd is the kind of kid who is "good at everything." I am sure it is not stress. We homeschool and although she is bright and witty, she does not have a competetive nature. She is pale and she is defeinitely a different child from what she used to be. She has told me that her bms are green (we do not eat alot of junk food or artificial colors) and sometimes with red and white clumps. I have not seen them, but I did see a yellow unformed bm which did not seem unusual to her at all. I am hoping to catch a bm this weekend to see what she is talking about. I have mentioned most of these things to two different drs, but they just nod, write and that's it.

What are your thoughts on this???

[CMWeaver]

Hiya....

I'm no where near an expert on Celiac yet......we just received a diagnoses on my twins about 1 week ago. One had typical Celiac symptoms and came up very high on a blood test. The other, is currently a thriving 4 year old. However, she can up at the borderline just positive. Since one of them was confirmed though an endoscopy and biopsy, I have them both gluten-free right now. From what I'm learning, Celiac symptoms can very.......sometimes greatly from person to person. I can empathize with you though on seeing them "sore" quite often. I felt so helpless and as you know it is so heart-wrenching.

I do know that there is another test that can be done through Enterolab. What I do know about it is that it is a stool test. The cost is approximately $100. However, there is a test through them that can also see if she is carrying the gene for Celiac and not have the "full blown symptoms" as of yet.

Their website has alot of information about the different tests that can be ordered and a fairly good description on each, I believe. It is www.enterolab.com

Hope she starts feeling better soon!

Christine

[FreyaUSA]

I would definitely look into the enterolabs test for your daughter, but in the meantime, a very easy way to find out if gluten is her problem is to simply remove it from her diet. She may notice a difference in just a day or two. When I went gluten-free (without consciously meaning to,) two weeks later I was a new person. It is strange that something so easy to determine is so difficult for doctors to suggest. My three kids were all borderline in just the IgG test while the others were normal. Anyway, I decided to put them on the gluten-free diet hoping to see positive results (the doctor said they didn't need to,) and within a week I was astounded. Symptoms that I had no idea were related were affected (for example, my daughter was diagnosed as having "dangerously enlarged" tonsils and the doctors were making me tape and monitor her breathing every night. One week gluten-free and her tonsils were half their previous size.)

Anyway, their OTHER pediatrician says it's obvious my children are at least gluten intolerant (and agreed that there wasn't any need to do a biopsy after that since they were going to stay gluten-free anyway.) And, at our last visit, she said she's had three other children in her practice have the same blood results as mine, low positive or high negative readings. She said because of what happened with my children, she suggested they be put on the gluten-free diet anyway "to check." All three had very positive health results on the gluten-free diet. (My 10 year old has always looked like a ghost, pale skin, dark rings around his eyes, SKINNY, and he too had "bug bites." Since going gluten-free, he's put on a little weight, he doesn't look like he's dying from anemia, no more bone pains and he's not complained of bug bites at all! Btw, I hadn't realized this had changed till you mentioned it. )

I really believe in being proactive in this case. Besides, it just can't hurt to try a gluten-free diet! No needles, no pills, no operations or anything with negative side effects, just a change in diet.

Good luck!

[tarnalberry]

The blood tests can absolutely give false positives, particularly if not significant damage has occured yet. You could ask for the full panel (five tests, I believe), or consider a biopsy, or look into just trying the diet (though this would make future testing more tricky).

[Boojca]

Also, don't forget that someone can have an intolerance to gluten and NOT have Celiac. They are two different things, but a lot of the "symptoms" are the same. So this could be what your daughter has. Why don't you give the gluten-free diet a try?

B