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
      103,895
    • Total Posts
      919,534
  • Topics

  • Posts

    • Test Results
      Update: I am about at my wit's end. I won't be able to see my new doctor until July 17 to get a referral to a GI doctor, so I continue to eat gluten and the effects continue to worsen. Today my boss, whom I have been working with for 12 years, and I had a meeting where he said he's noticed a change in many things, such as speech, not articulating well, forgetfulness, and other things that are affecting my work product. I finally told him I know there is something wrong with me medically and I've been trying to get to the doctor to no avail. I recall those four weeks early in the year when I tried out gluten free and was beginning to feel much better- more present, more sharp, and then went back on gluten in preparation for the blood test.  I just don't think I can do this gluten thing any longer and am thinking of going cold-turkey gluten free.  I'm 54 years old, am beginning not to care about a diagnosis because I just want to feel better and be able to do what I need to do. Because of how I felt going off of gluten earlier in the year, and eating gluten free when I was on the McDougall plan years ago, and how I feel while doing this gluten challenge, I am pretty convinced that my issue is gluten.  Any words of encouragement would be welcome.  If you've done gluten free and never looked back, tell me about it. 
    • Gardasil
      "I got this vaccination in 2009 when I was 20 and it completely altered my life. Made my celiac disease so much worse, sleep 15-18 hours a day, SIBO, it has completely altered my life since getting this vaccination. My doctor has two twin girls about my age and they both have digestion problems after receiving gardasil Thank you I have a young daughter and have wondered this exact question posed by the poster and your response has given me great pause about this issue which may come up in years to come. I am sorry to hear this wreak havoc on your life, but simultaneously thank you for sharing this detail to help those of us that have likely been decades misdiagnosed celiacs now raising children. Thank you.
    • Gluten does WHAT to the brain?
      "Wondering what kind of life my brother could have had - if  he had celiac - constantly haunts me" My sympathies that is just tragic, as this story is.  I hope you are at peace knowing you are aware of your celiac and help so many lost, scared, and confused celiacs here. It can never bring back your brother but I hope it can give soften some of what you feel that was/is beyond your control. His suffering and your loss has made you a better advocate to yourself and in your work helping us. I don't like my body or my  brain on gluten either. I do fear that people overlook the toll inflammation takes on the brain. It likely may explain decades of mental illness that was brain based inflammation unknown until changes in technology advancement catch up. However consuming gluten to study how one enters psychosis may not be the best method. Do no harm.  
    • Gardasil
      I got this vaccination in 2009 when I was 20 and it completely altered my life. Made my celiac disease so much worse, sleep 15-18 hours a day, SIBO, it has completely altered my life since getting this vaccination. My doctor has two twin girls about my age and they both have digestion problems after receiving gardasil
    • Gardasil And Celiac
      I have this same issue! I got gardasil in 2009 and have never been the same since. Celiac disease, thyroid problems. I used to be healthy and active and since I got that shot I have never been the same.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,939
    • Most Online
      1,763

    Newest Member
    vamanos25
    Joined