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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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


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
      102,674
    • Total Posts
      914,381
  • Topics

  • Posts

    • Itchy skin
      Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it.  Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
    • Where do I start??
      I will be going for my endoscopy on Februry 19. The other day in reading about Celiacs, I read about the strange rashes often associated with celieacs and gluten intolerrance. About six months ago, a rash exactly as you describe showed up on the backs of my knees. The doctor didn't know what it was, hought maybe it was ringworm, and gave me some topical medicine, and the spots did go away with time. However, I've had the same type of spots show up in other places occassionally. I know for a fact they were not ringworm.
    • Advice on reintroducing dairy.
      I can!   Start with hard cheeses, then yogurt/butter, soft cheeses and finally milk/cream.  Start slowly and build.  Give yourself time to get your body to release the enzymes necessary to digest lactose.  Certified gluten-free enzymes for lactose can help the transition.  Lactose free milk and ice cream are helpful too.  Remember, that genetically some of us are predisposed to being lactose intolerant no matter what (e.g. aging, race).   I wish you success!      
    • Gluten free diet, positive celiac screen...what should I eat now?
      Here is a link that explains why you should get tested (completely) for celiac disease: https://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/ As far as the link to the functional doctor....why?  If you get a celiac diagnosis, chances are you will heal on a gluten free diet.  As you have probably seen on this forum, most of us encourage newly diagnosed members to eat a whole-foods, easy-to-digest (a.k.a "cooked to death")  gluten-free diet to speed healing.  Going Paleo might not be the best right now, if you have celiac disease.  Eating lots of nuts, raw fruits and veggies can be tough on a damaged gut.  You can try that diet later!   Everyone is different due to various degrees of damage, so some may have temporary intolerances  (e.g. lactose).  You just have to experiment.   Save your money and spend it on good wholesome food.  I heartily support getting away from the SAD (Standard American Diet).   Celiac disease is the one autoimmune disorder that is healed by avoiding a food -- gluten!  
    • Itchy skin
      I have DH and itchy skin is a symptom.     Your Dermatologist could write a script for Dapsone, provided you're not allergic to Sulphur.     Expect blood labs to go with using Dapsone.      You need to study everything that goes in your mouth for possible gluten content, including all meds.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      59,700
    • Most Online
      1,763

    Newest Member
    Valou
    Joined