Question by Cindy B: anxiously awaiting celiac and rickets test?
My two year old daughter is quite underweight and has even been loosing weight. Now we are waiting for test results on celiac sprue and rickets. I am very anxious. Anyone know how soon she should recover if she has celiac? I already have a daughter with multiple food allergies (not wheat). How will I be able to feed them and avoid milk, eggs, nuts and now wheat too?

Best answer:

Answer by Glutenfreegirl
Hi. I hope I can help some.
First off, Celiac is not something you really ‘recover’ from. THe body will heal from the damage done by gluten, once Celiac is diagnosed and you start her on the gluten free diet. But Celiac is a lifelong autoimmune disease in which she will always have to be on the Gluten Free diet (however, maybe because of her youth, sometime in her lifetime they will develop a medicine to help Celiacs, but for now, no such luck.)

How was your other child diagnosed with allergies? If your daughter has Celiac, it is very very likely your other children have it, and either you or their father carries teh genes (Celiac is genetic.)

2 is very young to be tested for Celiac, but the blood work normally done is often not conclusive in toddlers because their bodies have not developed enough of the antibodies that the test is looking for. (that doesnt mean they dont have CD, it jus tmeans blood testing isnt usually enough.) Also some people are IGG and IGA deficient, which means theyw ill always test negative on a blood test for Celiac, no matter what bc they lack the antibodies that the test is looking for.
The gold standard in diagnosing Celiac is an endoscopy with biopsy, and understandably, this is not an easy task for a toddler. I am telling you all this because even if her tests come back negative, you may want to continue to evaulate her and look into other testing, such as genetic, bc ‘typical’ Celiac testing is not usually very useful in small children. Genetic testing is very often done in toddlers because it is non invasive, and there is no need for the child to be eating gluten. (For the blood test and endoscopy, the child MUST be consuming gluten in her diet prior to the tests or the test will be wrong.) Genetic testing can be done at home, but can be a bit costly,a nd most docs dont recongnizei t (but some will order it int he case of young children for the reasons I stated above.)
For more info no Celiac and to be sure you have a doc who is knowledgeable go to www.csaceliacs.org. There u can click “Local Support” and find a support group closest to you, contact their leader and you can hopefully find a child friendly GI doc who gets CD. (not all do!)

There are many many cookbooks, sites and products on the market for children with special diets. (The reason I ask about the other children is bc often untreated Celiac appears to be other food allergies but once a child is diagnosed with Celiac, they can again in time, eat everything they used to–EXCEPT gluten. In other words, the secondary dairy and nut intolerances go away. But that is not hte case if the alleriges are truly allergies.)

Here are some good resources:

Yahoo Health Groups:
SillyYaks
foodallergynetwork

www.csaceliacs.org
www.celiac.com
www.celiac.org
www.gfcfdiet.com
www.celiaccentral.org

Books:
Celiac Disease a Hidden Epidemic by Dr Peter Green
Living Wheat and Gluten Free for Dummies by Danna Korn
Gluten Free GOurmet by Bette Hagman (cookbook)
Cooking Without by Carol Fenster (cookbook)
Wheat Free and Gluten Free Cooking for Kids and BUsy adults (cookbooks)

many Gluten free cookbooks offer alternatives in their recipes for dairy free, egg free or nut free cooking bc they realize many Celiac’s have secondary allergies.

Please feel free to email me for more questions or support.

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