Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Healthcare...
0

5 posts in this topic

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...

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,725
  • Topics

  • Posts

    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,681
    • Most Online
      3,093

    Newest Member
    Misalina
    Joined