• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Need Help
0

4 posts in this topic

Ok. Here's my story.

In March, I started having some horrible, gut wrenching pain below my ribs, with bloating, diarrhea, nausia, you name it. I figured it was a virus, until the symptoms didnt go away. So, I went to my family doctor. She had me tested for Celiac Sprue. One of the antibodies came up at a 40 (30 or below being a moderate reaction?) or something like that. I'm really not sure. And put me on a gluten-free diet, then sent me to the Gastroenterologist.

I was on the gluten-free diet for 4 weeks, started to feel better when the Gastroenterologist said that this blood test that my family doctor used was not difinitive, and he wanted to run more tests. So, I had to go back on a wheat filled diet. He took more blood, and did a biopsy. The biopsy came back normal. The other blood work, normal. Now, by this week, because I was told to go back to eating a regular diet, I'm having soooo much pain again, it is almost unbearable. And the crazy thing is, I havent really been eating a whole lot of gluten/wheat products. I just went out to dinner twice, ordered things that would be less contaminated, so to speak, and at home continued to eat gluten-free because it overall makes me feel better.

So I called the Gastroenterologist and asked what's up with my results - Did I not eat enough wheat? They said that the blood work was sent to a very special lab, and these particular test was not dependent on gluten in my system. And then she said "Celiac Disease is just not in my mechanisms". What does that mean? What test(s) could they have possibly done? And why am I still feeling so miserable? I'm wondering if I'm allergic to wheat. Can a wheat allergy mock celiac disease symptoms? I mean, I not only felt better stomach wise on a gluten-free diet, but I had more energy, less fatigue, less achiness, less mood swings, less everything! But now I wonder if it was all in my head.

I probably should add, I have tons of other allergies that plague my life. I take two antihistimines: allegra and zyrtec, a steriod nose spray: rhinocort, another nose spray: astelin, advair and albuterol for asthma, and I get two allergy injections once a week (one in each arm). I'm frustrated because my Gastroenterologist is so overbooked with patients, I'm going 4 weeks between appointments, and I just want to feel better! Where should I go from here, what questions should I be asking, should I talk to my allergist instead of the Gastroenterologist. I just dont know anymore.

Thanks for your advice!

Melanie

0

Share this post


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


Melanie,

I'm sorry you are not feeling well, and having such a hard time with your doctor. However, you can completely do away with the stress of dealing with the doctor if you want to. You have learned from the diet itself what makes you sick. I have never heard of a Celiac blood test that does not rely on gluten consumption. Enterolab's stool panel can be done while glutenfree, but not the bloodwork. A biopsy will only come back positive when there is significant damage to the villi. It is very possible that you are in the early stages of celiac, and the damage just has not happened yet. 4 weeks glutenfree could very well have been enough to mess up the bloodwork results. You could have a wheat allergy, yes, but the treatment is the same: a glutenfree diet for the rest of your life. You do not need a doctor's note or diagnosis for that. It is nice to have confirmation from a doctor, but it is not required. Many celiacs use the improvement on the diet as confirmation enough. Feel free to come back and ask us questions, we will do our best to help!

0

Share this post


Link to post
Share on other sites

Melanie,

And then she said "Celiac Disease is just not in my mechanisms".

Melanie,

This sounds like your doctor tested you for the HLA-DQ2 gene which is connected with celiac. Did she say anything about gene testing?

You can still be gluten sensitive if you do not have the HLA-DQ2 gene.

Lisa S

0

Share this post


Link to post
Share on other sites

Well, I had food testing done for allergies because I have a ton of other non-food allergies. And, I had a mild reaction to wheat and dairy. So, I have taken both out of my diet and am feeling tons better. My eczema has cleared up as well. The doctor said I could try re-introducting the dairy back into my diet slowly in about 6 months, and same with the wheat. I'm nervous about the wheat though, as I only got negative tests for the celiac disease. So, I continue to eat gluten-free anyway, because I feel better.

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
      106,780
    • Total Posts
      932,373
  • Member Statistics

    • Total Members
      64,255
    • Most Online
      3,093

    Newest Member
    caryatid236
    Joined
  • Popular Now

  • Topics

  • Posts

    •  Oh good luck with your challenge and I hope you're able to feel better soon!   Yes, I am well aware of Michael Marsh and his thoughts  and they are certainly in the back of my mind.  I was on gluten for 5 months when I had the most recent antibody testing. Admittedly my TTG was the highest I've ever seen it but it's still a 7 and the reference range goes up to 20.
    •  That is true most people on the board do refer for Endoscopy  and are responsible in their replies to people who are initially reaching out. But I did have experiences where some folks will tell people that  certain tests are only positive with celiac disease. Which is not the case, so I'm just reminding those folks. 
    • Yes!!!!  My best advice to expedite healing is to NOT eat out until you are feeling great and really think you have mastered the diet.  If you must eat out, use a site like "Find Me Gluten Free" and select only those restaurants reviewed by celiacs.  Otherwise pack your own food and eat at supermarkets.  I hope you feel better soon!  
    • Why?  Why bother to get tested?  A gluten challenge can be brutal and long (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy): http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ I just had anemia which prompted my doctor to run a celiac panel.  I waited 7 weeks for my endoscopy due to work constraints.  I ate gluten like crazy (I knew I had celiac disease in my heart).  At the end of those 7 weeks, I had all the classic gut symptoms which took over a year to resolve.  Even a glutening has triggered new  (I think) additional autoimmune issues.  I would urge you to to carefully consider the benefits of a challenge based on your current AI issues.  At least talk to a good doctor.   My hubby has been gluten-free for 16 years -- long  before my diagnosis and he does not know if he actually has celiac disease, but we know gluten makes him sick.  He chooses to never do a challenge.   As far as healing or seeing results.  It varies as we are all different.  My anemia, with supplements, resolved within three months but other issues took more than a year and I already had a good handle on the gluten free diet. Finally, reducing gluten is not an option for a celiac.  Anything over 20 parts per million can trigger a celiac disease flare-up for most celiacs. I hope this helps.  Just be sure you really research this throughly is my non-medical advice.    
    • People here are told to go to a gastroenterologist for an endoscopy if they show high on any one test. They are not told they have celiac. Weak high numbers can be other things, but strong high numbers are celiac most of the time. That's what my gastro told me. As nobody here is a doctor we can only give an opinion.
  • Upcoming Events