Newly DX Celiac

[Dana]

I have been reading and researching daily and I am exhausted!  I know this new diet is a process and it takes time to learn whats good/bad and I am frustrated w/trying to call Manufactures!!  My head is full of questions and I might ramble a bit.   I know that Modified Food Starch is "ify" but how "ify" is it?  Is cheese a no no or is it mostly if you are having dairy issues?  Most importantly I have a 3yr old and her physician says not to test her unless she is having symptoms.  Should I insist that she be tested? 

[CarolM]

Dana,

Yes, I feel your frustration!  I know how hard it is to switch to a GF diet and you're right - it takes time to get the hang of it.

Modified food starch is generally regarded by the FDA as GF.  Here is an excerpt from a letter the FDA sent Ms. Marie Kawaguchi (Founder of the Celiac Association of Northern Utah) in 2003:

In regard to modified food starch, the FDA does not require manufacturers to name the source of the starch because the starch isolation process used in preparing modified food starch removes the protein (i.e., gluten) component. Thus, modified food starch is the common or usual name of the product regardless of source. Although we acknowledge the possibility that traces of protein might occasionally trigger an adverse reaction, and we acknowledge your concerns, we have not been able to document reported cases of food intolerance to the modified food starches commonly available for commercial use. Thus, irrespective of the source, modified food starch is not likely to be a problem for most gluten intolerant consumers. Therefore, in the absence of information showing that modified food starch will trigger adverse reactions, there is no basis at this time to require source declaration.

When the term “starch” is used alone it is considered the common or usual name for granules of starch made from corn; alternatively, the name “cornstarch” may be used. Starch from other sources must be named using a non-misleading term for the source of the starch such as “wheat starch” or “potato starch.”

The complete text of this letter can be found on the FDA's web site HERE.

Most cheeses do not contain gluten and are safe for celiacs.  One major exception would be blue cheese, which uses bread.  We have a thread here about dairy and cheese.  Ice cream, also, can contain gluten, especially "soft serve" ice cream.  Cheese that is already shredded may contain gluten because they dust the cheese to prevent clumping.  Usually, they use potato starch, but always check the label to be sure.

For right now, the best method for confirming a diagnosis of CD is endoscopy of the intestines.  This may be why your physician is hesitant to perform this procedure if your child is asyptomatic.

I hope that helps answer your questions somewhat.

Carol

[Dana]

Thanks again for the information it is very much appreciated.  My pediatrician was agreeable to order the lab test for my daughter.  I have heard that the test can have false results but do you think it's worth doing it because if it comes out positive then I can just put her on the diet.  I don't feel that I would need to put her through an EGD.  If it is negative then I can assume she doesn't have it but watch for symptoms.  I hate to restrict her diet if she actually doesn't have a gluten- intolerance.  She does complain about tummy, back, and leg pain.  At her age it's just hard to tell if her tummy hurts because she's hungry or because she may be really having pain.  I just don't want her to go through what I have experienced with Celiac.

[the sensible celiac]

I don't feel that I would need to put her through an EGD.  If it is negative then I can assume she doesn't have it but watch for symptoms.  I hate to restrict her diet if she actually doesn't have a gluten- intolerance.  She does complain about tummy, back, and leg pain.  At her age it's just hard to tell if her tummy hurts because she's hungry or because she may be really having pain.  I just don't want her to go through what I have experienced with Celiac.

It might help you to get dietary support from her school if you have a formal diagnosis to report. For the sake of easing her future medical care, I think you might want to pursue this with her pediatrician far enough for her to rule celiac disease out or diagnose it.  I'm only suggesting you balance this issue in your overall decision making.

Please let us know how it works out. Hundreds of people read the messages here, you may never know how much your message can help others. 

[vsmith]

Hi Everyone,
I am just new to Celiac's and still working to convince my doctor that I may have it even though I have stopped eating wheat/gluten and feel 100% better.
Anyway, I wanted to offer 2 products that I have found out about and maybe some people know already but probably some don't so here goes:

An amazing reference book to get is "The gluten Free Diet" by Shelley Case. She seems to be a guru on Celiac's and the book has a huge amount of information-almost like an encyclopedia. There is a "shopping list" that you can photocopy and take to the store and there is also a huge list of products available by companies including all of their contact info plus if they have online ordering.

The second is a new type of test that my chiropractor discovered. The lab is based in Texas, called Enterolab (www.enterolab.com). You can order the test, they ship it to you and you ship it back. They test your stool and it is apparently a more sensitive test and you don't have to be eating gluten in order to take the test. The cost is apparently $99-which I thought was reasonable and am going to try it so will let you know.

Thanks for this site- Celiacs Unite!!!!