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


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
      103,347
    • Total Posts
      917,420
  • Topics

  • Posts

    • Weird Reaction
      Hi again Richie, A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually).  Sometimes when you're intolerant to something, when you have it, it makes you feel 'better' but it doesn't last and usually end up worse, it's like a drug - and in the case of caffeine it is. I also take a daily probiotic (gluten free and dairy free etc)., which is good for healing the gut.
    • Weird Reaction
      Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since. Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago) Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how. But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios. It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining.  It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid. Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though. Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases. I do feel better in having found these forums though.  
    • Daughter with celiac- need test result help
      You are doing well.  We didn't have a "normal" tTG for 6 years and were also very strict.  Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize.  Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago).  I wish we had done a DGP much earlier and I had pushed for that sooner.  I would start there and see what happens.     Sounds like you're doing everything right though. Sometimes it just takes time. 
    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Celiac.com: Portable Device Can Test If Your Food Is Gluten-Free
      For people with gluten allergies or celiac disease, the idea of eating out in restaurants can be terrifying. It typically involves scrutinizing menus and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,483
    • Most Online
      1,763

    Newest Member
    Amanda912
    Joined