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gracie1

Doctor Search

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We live by Ft Wayne, Indiana and I am looking for a Doctor who specializes in Celiac Disease for my 23 year old daughter who is not doing well. Considering Mayo Clinic, Cleveland Clinic, and Celiac Disease Center in Chicago. If anyone has any thoughts or suggestions, they would be greatly appreciated. She was diagnosed locally, but I think with her not thriving and feeling worn out all the time we need further help. Thank you

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Celiac.com Sponsor (A8):

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Functional Medicine

Try finding a Functional Medicine Doctor in your area. They will treat the whole her and should know about Gluten and Celiac and how to handle recovery, you may still want to ask when you call though as I can't be 100% sure for every Doc on there. :)

Best of luck!


Grain Free

Casein Free

Soy Free

Refined Sugar Free

Preservative Free

Free Range

Free Willy

Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

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So sorry she's having trouble. :-(

I don't have a recommendation for a doctor, but until you are able to get her in to see someone, some ideas that might help at least a little, that you can do on your own.

1. Have a doctor test her for vitamin and mineral deficiencies - that is often a problem for Celiacs.

2. A food journal, recording everything she eats and reactions - including brands of what she eats - can be VERY helpful in case she has another food sensitivity or allergy. It can help you track it down - there can be a delay for up to 48 hours, though, so you have to do it for a while sometimes before you see a pattern. And remember - ANYTHING can be an issue, with processing today. For example, iodized salt has corn in it to stabilize the iodine, and can have other chemicals added to keep it from clumping. So if she had, say, a sensitivity to the chemical used, she'd react to everything she put the salt into. So - every last ingredient needs to be written down on one of these journals.

By the way, allergy tests are only so-so in reliability (and this info came from my allergist!), otherwise I'd recommend one. But if she can find a pattern between eating and feeling crummy, who cares what it is, as long as it stops hurting her because she stops eating it, yeah?

3. See if she's willing to drop processed foods, pretty much. If she doesn't already know - Gluten Free does not mean 'zero gluten.' It's actually a legal definition of how much gluten a product can contain, and it's not even regulated yet! The gov't can't decide how much gluten they think will be 'okay' to have in gluten free foods. Now, most celiacs can have gluten free foods and seem fine, but sometimes, a celiac is more sensitive and they react to the low levels of gluten. So they never heal. Also, because these products (the gluten-free crackers, cereal, etc...) are 'low' gluten, if your daughter eats a lot of them, she may still be getting too much gluten. My daughter, for example, can eat maybe one bowl of gluten-free cereal that has less gluten than the norm (5ppm), and that's her gluten-free product for the day. Any more than that and she's ill - and we're still trying to see if this is too much or not - it's hard in the beginning to track it all down and make sure the diet is safe.

Fruits and veggies are the safest options. Olive oils are generally less of a contamination risk than nut, seed, and grain oils (the nuts, seeds, and grains get minor CC during harvesting and production, often). gluten-free grains are pretty easily contaminated (and they still get to call themselves gluten free,ugh) so she may want to limit them severely for a couple weeks to see if it helps. Whole meats are better than processed ones, and getting them frozen from the slaughterhouse is usually safer than getting them at the butcher counter where they were cut up next to the other meats that were getting gluten coatings put on them. Dairy is iffy, as many healing celiacs are lactose intolerant (the damaged part of the villi is where lactose is digested). So she might want to skip dairy until she's better.

If this helps, and she starts to feel better, she can always slowly add in foods and figure out what works for her, and what doesn't.

4. It may help to check out other issues that are common to celiacs. Hypothyroidism, diabetes,and Hashimoto's disease are possibilities, depending on her issues. Fructose malabsorption, histamine sensitivity, and sulfite sensitivity may also be problems, if she's having general issues, or lots of trouble with what she eats. H. Pylori infection could be a problem. I have heard of yeast overgrowth, as well, although I don't know a lot about it, just that some celiacs have reported suffering from it. Also Crohn's disease can occur in Celiacs more often, too.

Again, if she's not well or improving, it sounds like you have the right idea in hunting down someone. But if it is taking a while, some of the above might help her some while she's waiting.

Good luck to you and her both in the coming year!

We live by Ft Wayne, Indiana and I am looking for a Doctor who specializes in Celiac Disease for my 23 year old daughter who is not doing well. Considering Mayo Clinic, Cleveland Clinic, and Celiac Disease Center in Chicago. If anyone has any thoughts or suggestions, they would be greatly appreciated. She was diagnosed locally, but I think with her not thriving and feeling worn out all the time we need further help. Thank you


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I am a traditional western medicine doc who was treated so poorly by my colleagues that I went to a chiropractor who specialized in nutrition and homeopathic medicine. I was hella skeptical but he is brilliant and knew so much more about food intolerances than any of the THREE GI specialists I'd seen. You may give them a try. If not, I can highly recommend the University of Chicago's celiac center. I did my training there and unfortunately didn't know I was celiac at the time, but I was always impressed with how cutting edge they were.

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I am a traditional western medicine doc who was treated so poorly by my colleagues that I went to a chiropractor who specialized in nutrition and homeopathic medicine. I was hella skeptical but he is brilliant and knew so much more about food intolerances than any of the THREE GI specialists I'd seen. You may give them a try. If not, I can highly recommend the University of Chicago's celiac center. I did my training there and unfortunately didn't know I was celiac at the time, but I was always impressed with how cutting edge they were.

that is completely unnerving to hear a Dr say that. I really think there is something completely wrong with the healthcare system. not just talking about insurance but the whole thing in general.

My insurance won't pay for a holistic Dr. or at least the only one I found searching the link in this thread says they don't take insurance and the Dr. doesn't practice at a hospital at all.

So, since I'm not in a financial position to pay for visits out of my own pocket. i guess i'm just SOL like the

other 350 million people who have to rely on Drs trained in foreign countries who come here and are handicapped by our insurance system to treat us.

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