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#1 lPa1nl

 
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Posted 02 May 2005 - 12:22 PM

Ok, Hi again. Just a recap I am a boyfriend of celiac disease. She has been gluten-free since 7/04 (or trying to be). She has other food allergies (corn, sugar) or as she puts it everything under the sun. She has been going to a 'Whole health specialist" with good results this is a nurse practioneer who is associated with her PCP. She prescribes "homeopathic" remedies as opposed to antibiotics.

The problem I am having is that lately (1.5 weeks) my Girlfriend has had a very itchy rash on her arms, neck, legs. She was prescribed some new nutritional supplements for her to take by her 'Whole health specialist". Come to find out that 4 out of the 6 supplements had "oats" in them. Doing more research she found that 2 other supplements also had some type of gluten in them as well.

So I ask "Is it wrong for me to believe that this 'Whole health specialist" needs to put more effort into knowing what she is perscribing or is it a case that from now on my girlfriend is going to have to read the ingredients on every supplement perscribed her?"

My Opinion. If her and Iare going to have a gluten-free house making sure that down to the soap, sunscreen, and laundry detergent is gluten-free. That the people she trusts to make her healthy are not, in my opinion doing the jobs properly. It just gets me upset that the person who is taking care of her is the one who might be responsible for this latest contamination.

Any feedback would be greatly appreciated...
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#2 KaitiUSA

 
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Posted 02 May 2005 - 12:58 PM

Yes it's a reasonable request for them to put some effort into this. I went to someone who gave me some homeopathic things..said they were gluten free and before I took them I researched it and it was not gluten free. This type of thing makes me mad as well but people are like that and you still have to double check everything that they give to ensure nothing slips in. Even things that they tell me are gluten free I always will check because unless they are celiac and diligently check labels and are used to that..they will not know.
I had a doctor give me something and I ask if it was gluten free, she turned the bottle over and read for gluten on the ingredients and said yep it is. Alot of supplements at health food stores list what they are free of so they may be a good place to look. She can also get the names and brands of things this doctor wants to have her on then call about them and see if they are gluten free. I know this is frustrating for her and for you.

One thing you said was she was trying to be gluten free....trying is different from doing. She really has to be dedicated to this diet to ensure she won't get any life threatening complications in the future.

The itchy rash she is getting is probably DH. This is a skin reaction to gluten.
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Kaiti
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Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

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#3 lPa1nl

 
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Posted 03 May 2005 - 07:24 AM

Hi Kaiti,

I am glad that other people see my point of view. I guess no matter what she is going to have to double check on her supplements. She is doing real well on her restrictive diet, she makes me proud how well she is doing. Apart from the slip ups on the supplements she has changed her lifestyle to be gluten-free, she is well aware of her health risks if she doesnt follow the diet.

I just got a call from her about maybe 30 minutes ago. She was positively diagnosed with DH. Is this something that people with celiac disease are more prone too? Is there anything topical or internally that can be taken to minimumize the symptoms? Is this a result of having been contaminated by Gluten, or is it something that periodically happens? She was told to eliminate Rice, Soy, and processed foods from her diet.

Any Information on this would be a huge help.
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#4 KaitiUSA

 
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Posted 03 May 2005 - 07:34 AM

DH is a skin intolerance to gluten. Some celiacs do have this and there is a section on here about that. This means she needs to avoid touching anything with gluten as well.
When you have DH you have celiac. Not all celiacs have this...this means soaps, shampoos, lotions, cosmetics, etc need to be gluten free. I use gluten free products anyway to ensure it does not get in my mouth in any way shape or form.
I however have not been diagnosed with DH but only for celiac.

Eliminating rice and soy would not be a celiac thing..she must have other intolerances. Maybe once she is gluten free for a while she may be able to start adding rice and soy back into her diet.
Before I was gluten free I had alot of problems with pretty much everything I ate and I was on and off lactose intolerant my whole life....now I have no other intolerances and I am fine with dairy.

For DH there is a cream you can get for the bumps but there is nothing you can take for symptoms and reactions. They have to run its course. Some people have reactions that last short and some long. Mine last a good 2 weeks with the 7th day being the worst.

There are things like probiotics, enzymes, and vitamins that can help boost your system so it can fight better. I personally am for a liquid vitamin especially when new to the diet because of the way it absorbs into your body.

Good luck with all this..if you need any help let me know :D
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Kaiti
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Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#5 plantime

 
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Posted 03 May 2005 - 08:19 AM

A Whole Health Specialist should already be looking at labels for ingredient lists. She should already be watching for gluten. It is not unreasonable to expect her to do her job. That said, I don't take anything unless I get to read the label for myself. It is a sad fact that we have to do this, but it is our health and lives that are at stake. My health and healthcare are my responsibility, and it is one I do not shirk.
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Dessa

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