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    Do you have questions about celiac disease or the gluten-free diet?

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I am going to a nutritionist for the first time on Tuesday (I was diagnosed about two weeks ago). From what information I got from my PCP I know I need to ask about multivitamins and Calcium and Vitamin D suplements. But this is about all my PCP knew. I know that I only know a very little amount. I was wondering if people had questions that I should ask the nutritionist when I see her. I feel like I don't know what to ask, but do know that there is a huge amount I don't know. The GI doc just gave me the diagnosis and asked it I had any questions then (over the phone), I didn't because I was too overwhelmed. The seems to be the last chance to ask questions. Help? Thanks.

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I am going to a nutritionist for the first time on Tuesday (I was diagnosed about two weeks ago). From what information I got from my PCP I know I need to ask about multivitamins and Calcium and Vitamin D suplements. But this is about all my PCP knew. I know that I only know a very little amount. I was wondering if people had questions that I should ask the nutritionist when I see her. I feel like I don't know what to ask, but do know that there is a huge amount I don't know. The GI doc just gave me the diagnosis and asked it I had any questions then (over the phone), I didn't because I was too overwhelmed. The seems to be the last chance to ask questions. Help? Thanks.

If I were you, I'd find a nutritionist who knows celiac disease quite well. My first experience with a nutritionist was a laugh. She just read off of some pages and provided me some copies of things to read that I already knew about.

If you find a nutritionist who had celiac disease, you would really be in luck. I found one, and I went through some rough spots in my recovery process (still going through them), and thanks to her, I am now on a diet for people who get hypoglycemic. It appears, depending on severity of damage and your age, if you've lived with celiac disease a long time and start healing, your intestines don't really know how to work properly, and your body reacts in a way that it's not used to. Because of this, I've become hypoglycemic, so now I am following a diet that is higher in protein and allows complex carbs. This has helped me tremendously. Had I not had her a nutritionist, I would be taking Xanax all the time as the doctors thought I just had an anxiety issue. But my nutritionist, because she went through something similar, understood what I was going through and recommended a diet change. It has helped me a lot. Although I'm not fully recovered and still suffer complications, I know I can turn to her for help.

Again, if you can find one, go to a nutritionist that is either well-versed in celiac disease or has had it herself/himself.

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No matter what, don't ever think this is the final time to ask questions. You can ask questions here anytime and as many times as you wish. Someone will always respond. You also should be able to ask your PCP questions, problem is he is not very well versed in celiac disease. There is a lot of information on the web and at this site. A good nutritionist could be a Godsend as the PP pointed out. I would ask about her qualificaitons with celiac disease before I schedule an appointment. Ask to interview her by phone, before you choose. That's not unreasonable.

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Hi,

My GI put through the referal to this nutritionist so I'm hopeing that she will know about celiac disease as my GI seemed to know about it. I'm moving in a month to graduate school and there I will go to the health center. I will have to find out what they know or if I am going to have to go some where else for treatment of this. Thanks.

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Hi,

My GI put through the referal to this nutritionist so I'm hopeing that she will know about celiac disease as my GI seemed to know about it. I'm moving in a month to graduate school and there I will go to the health center. I will have to find out what they know or if I am going to have to go some where else for treatment of this. Thanks.

The only treatment for celiac is the diet. Your health center should be notified of your postive diagnosis, you can have copies of your records either sent to them or you can get them from the doctor's that did the diagnosis and give them copies. There are some tests that should be done, you should have your antibodies rechecked at 6 months to a year, if they were part of the diagnosis, and it is a good idea to check your vitamin and mineral levels to make sure that you are absorbing your nutrients after you have healed. It is also reccommended that you have an evaluation and testing for osteoporosis or osteopenia as these are often found in even very young celiacs.

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The only treatment for celiac is the diet. Your health center should be notified of your postive diagnosis, you can have copies of your records either sent to them or you can get them from the doctor's that did the diagnosis and give them copies. There are some tests that should be done, you should have your antibodies rechecked at 6 months to a year, if they were part of the diagnosis, and it is a good idea to check your vitamin and mineral levels to make sure that you are absorbing your nutrients after you have healed. It is also reccommended that you have an evaluation and testing for osteoporosis or osteopenia as these are often found in even very young celiacs.

I was using the word "treatment" in its most broad sense in any time I need to visit the doctor for medical tests to check vitamins and blood levels, especially when I would otherwise not need to.

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    Thanks for all that! No luck from PCP anyway -- just a referral to GI to go along with the referral to dermatology, and we're not sure about going to either one if it's just going to require months more of gluten. He's already at the end of his rope with two years of itching all over, so it's a bit much to ask. Presumably endoscopy would show intestinal damage, though, without adding more gluten, since it should take a lot longer to heal? He definitely has intestinal issues along with
    I thought it was the least I could do, after all the help and information that others here, such as yourself Squirmingitch, have provided me here. (By the way, I am on day 7 of the Fasano Diet, and just today I am really noticing a significant lessening in the itching and little DH blisters/bumps, and my skin just feeling "calmer" in general. But I've had good days like this before, here and there within the past five or six months, so I'm not claiming success quite yet.)
Good info. Thanks for posting. It's always great when people post what they learned from a phone call, or email with a manufacturer.
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