• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Challenge. Ugh.
0

2 posts in this topic

So I was "mostly" off gluten for 3 years (not worry about crumbs in the peanut butter, eat some icing off the cake at work, still eat soy sauce etc), and feeling good. I had classified myself as NCGI because I had some negative TTGs before going off. I decided to do the genetic test in the hopes that I didn't have a celiac gene, and would then feel quite fine doing my "mostly" diet and not causing any long term health problems vs doing a poorly controlled celiac person's diet. Lo and behold ... DQ2 AND DQ8 possible. Oh well, so much for that strategy.

Now I'm at the 2 month mark of full gluten challenge - hasn't been fun. My ibs is worse, but the worst is my skin - I have overall itchyness, random mouth sores, swollen scaly patch on the edge of my lip that won't go away, fatigue, irritability, and somehow my husband is still hanging in there with me! My usually clear skin is covered in tiny little bumps (not exactly acne, although I have some of that on my face too) but if you look close it's millions of little skin coloured bumps, like keratosis pilaris but all over my neck, shoulders and back. Yuck!! I haven't changed anything else. I always feel like scratching (but don't). My joint stiffness is worse (I also have ankylosing spondylitis and am on a biologic and celebrex).

I was planning on doing 2-3 months, but I'm so done!!! Going for my labs this week and then probably I'll book an endoscopy asap.

In the meantime, I have been checking things off my gluten "bucket list" - this week I had mcnuggets and fries (yum! eat that about once every 3 years anyways), and a mini Cinnabon. In heaven. Food cravings, however, are out of control. I need my test results back before I gain too much weight!!

Anyways, I'm amazed I made it this far, can't wait for my skin to clear up. Anyone else get these funny bumps all over?? I've had it on the backs of my arms before, but this is ridiculous (and gross).

Hopefully I'll be posting some negative test results, and happily going back to my "celiac-lite" diet and feeling way better, and clearing up before the warmer weather and lighter clothing arrives!!

Thanks for reading :)

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Just wanted to throw something else in there, though you might not thank me :). I tested negative for celiac from blood and biopsy, and then in a gene test. I been gluten light for years. I did 3 weeks of a gluten challenge, which was enough to convince me to try strict gluten-free. I have found a massive difference between gluten-free and gluten light, I have my life back.

I have been diagnosed non celiac gluten intolerance, on the basis of my response on and off gluten, and medical history.

I am not saying it will be like that for everyone. Might be worth considering a short spell strictly gluten-free.

Good luck

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
      107,324
    • Total Posts
      935,503
  • Member Statistics

    • Total Members
      64,986
    • Most Online
      3,093

    Newest Member
    Sue Seguin
    Joined
  • Popular Now

  • Topics

  • Posts

    • It was difficult yes, but on reflection worthwhile as the gluten challenge confirmed that a wide spectrum of symptoms were all either fully or mostly resolved on a gluten free diet and resuming it saw them reappear. Once you know this it doesn't really matter what blood tests say, you don't want eat gluten ever again, or at least I did't. It sounds like you're happy to go gluten free, you may want to take a look here for some tips:  Best of luck, hope you find as much support here as I have  
    • If she was just tested for DQ2 or DQ8 then it isn't for sure that she will never develop celiac.  There are other genes that have been found to be associated but not all doctors are aware. The gene I have a double copy of, DQ9, is one example.  Here is one research article but more can be found for those interested.  Evidence that HLA-DQ9 confers risk to celiac disease by presence of DQ9-restricted gluten-specific T cells http://www.sciencedirect.com/science/article/pii/S0198885912000262
    • Well, thank you for replying. Yes, I would also like to know and have a certain "validation" but I will go on to eat gluten free.  Thank you for the idea of keeping a food diary.  I was keeping one for weight loss, but I guess my primary focus will be gluten-free as well.  I'm sorry you had to eat gluten just to find out both tests were negative. That was disappointing, I can only imagine. 
    • Thank you everyone. Jmg & cycling lady sorry for being snippy . I appreciate your help just frustrated. sorry if I am a bit snippy. Not well as you sense. I hate this particular symptom/ reaction. The gluten challenge opened the door to a bunch of  symptoms I buried for 3 1/2 gluten-free years that I had no intention of waking again. I now know it's always been immune and food, but get frustrated over the the amount of time it has not been diagnosed it feels unjust and that most Dr still don't get it 38 years later.  It was reborn after my gluten challenge and I am beyond sad we discovered my DS has this too. As we removed my allergens from the house and my DS was off the foods, if he ate something at school or a friends (because we just removed it for mom) we quickly found and he that he's like mom. He looks like dads mini me but more handsome, but has moms food issues -yikes.  His ped Dr would not test him for celiac or refer him and does not understand food intolerances vs IgE allergies. when we ask for a prescription for allergen free Advil or Tylenol ( I found a compounding  pharamacy willing to work with us) he had ortho work done , she tells us she does not know how to write a prescription for that.   We really don't like reactions and it did say 100 percent juice and quite frankly we believed it.  The histamine  definetly a potential issue as sulphites does not seem consistent food diary wise. I am not sure what is going on. More likely we are celiacs with leaky guts manifesting as food sensitivities trying to heal. I just know I have more intolerances then when I went in. I went into the challenge not being able to eat gluten and came out with all heck breaking lose.  I quit my PT job so I can Prep and cook from scratch entirely growing all my own herbs etc trying to heal. My husband actually enjoys our food even more and tolerates the "woman he married being gone and replaced by this alien" my words not his. He does want me to heal, believes I will, so he can have his wife back. I question if I just have to accept who I am now. I am disheartened that it's slow to heal and despite my years of this undiagnosed garbage I can't get my son the help he needs in 2017! thanks for letting me rant. It was stupid to believe a processed juice maker I'm waiting to activate my water kefir colony so we can add something to our homemade almond milk and water options.   thanks for letting me rant and why do I still have to rant.   maybe the 43 years of frustration and anger of being an undiagnosed celiac.   so sorry y'all. Cranky few days  
    • My daughter did not test positive for celiac (6 week gluten challenge after being gluten free for 2 months).  So she is technically NCGS. One of her worst symptoms is leg pain. It was a chronic problem when she was 7, to the point where she could no longer play soccer. At 8 we went gluten free because of GI issues and the leg pain went away. It came back with the gluten challenge and again went away when we went off gluten for good after testing. If she gets glutened, that is one of the tell-tale symptoms. She has had to use crutches because the pain is so bad.  And when glutened, the pain usually lasts about 3 days. 
  • Upcoming Events