Where Do We Go From Here?

[FLmom]

I'm new here & trying to figure out what the step is next. My daughter (who's away at college) has had fatigue & headaches for a couple years and done everything the doc ordered: vitamins, muscle relaxers & meds, MRIs, drinking more water, etc.. She's also recently been diagnosed with iron deficiency. During Spring Break she had a blood test at the doctor to see if she had food allergies. Wheat was on the short list of what they checked for and it came back negative. She had stopped eating gluten for a couple of weeks thinking that might help, but because of the neg wheat allergy test results started eating it again about a week ago. Then beginning on Saturday and every meal she's eaten since, she's thrown up - even just a banana & water for breakfast this morning. When she called to tell me yesterday that she was still getting sick I suggested she just quit eating gluten & dairy. She says her insides are in severe pain and she's starving but afraid to eat or even drink water now. She has no fever and no other symptoms of flu - if she doesn't eat she feels okay. The doctor's nurse told me today she has to drink to prevent dehydration, so she's eating ice chips now because she's got two more classes to get through today.

I guess at this point my questions are... Is it possible that gluten could be the culprit in spite of the negative wheat allergy blood test? Should I take her to a specialist since our doctors nurse told me today that those blood allergy tests they do aren't very accurate? If so, what kind of specialist? Any other help you can offer would be much appreciated. It's hard with her being in a dorm room & not home. THANKS!

[buffettbride]

A wheat allergy is different from celiac disease or gluten intolerance. She could still have problems with gluten even after testing negative for a wheat allergy. Perhaps someone could post the blood tests to request from a doctor for the celiac panel? I always forget what they are.

[mushroom]

I'm new here & trying to figure out what the step is next. My daughter (who's away at college) has had fatigue & headaches for a couple years and done everything the doc ordered: vitamins, muscle relaxers & meds, MRIs, drinking more water, etc.. She's also recently been diagnosed with iron deficiency. During Spring Break she had a blood test at the doctor to see if she had food allergies. Wheat was on the short list of what they checked for and it came back negative. She had stopped eating gluten for a couple of weeks thinking that might help, but because of the neg wheat allergy test results started eating it again about a week ago. Then beginning on Saturday and every meal she's eaten since, she's thrown up - even just a banana & water for breakfast this morning. When she called to tell me yesterday that she was still getting sick I suggested she just quit eating gluten & dairy. She says her insides are in severe pain and she's starving but afraid to eat or even drink water now. She has no fever and no other symptoms of flu - if she doesn't eat she feels okay. The doctor's nurse told me today she has to drink to prevent dehydration, so she's eating ice chips now because she's got two more classes to get through today.

I guess at this point my questions are... Is it possible that gluten could be the culprit in spite of the negative wheat allergy blood test? Should I take her to a specialist since our doctors nurse told me today that those blood allergy tests they do aren't very accurate? If so, what kind of specialist? Any other help you can offer would be much appreciated. It's hard with her being in a dorm room & not home. THANKS!

Welcome to the forum, FLmom.

I am so sorry your daughter is so sick while away from home. It is hard to be a long-distance mom!

First of, there is a difference between an allergy and an intolerance. An allergy produces an IgE response, while celiac/intolerance produces an IgG and IgA response. I am no expert on the fine points of biochemistry, but the test she needs to find out if she is a celiac is the celiac panel, consisting of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

A total of five tests, the last being a control to make sure the other results are valid. If any of the first four is positive the doctor will probably want to order an upper GI endoscopy, where they take samples of tissue from the small intestine to look for the damage that gluten causes. While this is considered to be the "gold standard" of diagnosis, some doctors will diagnose based on the blood test and a positive response to withdrawal from gluten. You should take her to a GI specialist, preferably one who is familiar with celiac disease and its diagnosis, because it seems so many are not. Contact your state Celiac Society for help in finding one.

If your daughter is in college she is probably on a meal plan, and the college will probably demand proof of diagnosis before they will accommodate her with a special diet, so you should probably pursue a diagnosis instead of just having her stop eating gluten. So the sooner she can be tested the better because you must still be eating gluten for the tests to be valid, unfortunately. So it would be ideal if the blood can be drawn this week.

As for her present distress, is there a medical clinic at the college where she could go for help in the meantime? This sounds like a very severe reaction. But it often happens that we react more severely to gluten after it has been withdrawn for a period.

I hope you can get help for her soon.

P.S. Any M.D. can order the blood test; can you convince the doctor who did the allergy testing to do this?