• 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.

Finally A Diagnosis! Sort Of...
0

8 posts in this topic

Going through some strange emotions today after talking my GI...

 

Well, we've ruled out Celiac as best we can considering that (due to ignorance) I've been gluten-free for 8 months, never had all the proper tests, and now can't tolerate a gluten challenge at all. But it's too late to hit the rewind machine...

 

Since I also don't have the main celiac genes (though I do have DQ9, which in two studies was linked to celiac), my doc is comfortable now saying I have (drumroll):

 

Either Non-celiac Gluten Intolerance OR a wheat allergy OR probably both.

 

I've been scoped on both ends, cat-scanned, ultrasounded and x-rayed and nothing too serious has popped up. I may do a "barley challenge" just to see if I can narrow it down any more LOL...

 

Soooo... I guess we'll never know 100% for sure about celiac, and I have to get used to being officially NCGI and/or allergic to wheat. I have to say, it feels strange to have one of those diseases (NCGI) that a lot of doctors don't even believe exists yet.

 

None of this lessens my commitment to being gluten-free, I just feel weird having what some docs see as a "made up" disease. :( Like they're always going to see me as a nut job when they read my chart, sigh... Well, I am a nut job so I guess I should accept it LOL...

 

 

0

Share this post


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


Any type of gluten intolerance is a GI's area, and if the GI says something is causing your symptoms, then it's not made up... right?  :D  You have a Gluten Intolerance, you're just not sure if it's caused by celiac or not. I think doctors are starting to see gluten intolerance almost as a spectrum disorder like autism; there various forms of autism out there (aspergers etc) but it still boils down to the same thing. I don't know if I make sense today.  ;)

 

I'm glad you have a diagnosis even if it's not as clear cut as you would have liked. I have a feeling that as the years go on, fewer and fewer doctors will "pooh pooh" a NCGI diagnosis.... You're a trailblazer!  ;)

 

Best wishes

0

Share this post


Link to post
Share on other sites

Did your doctor test you for the wheat allergy? It's a pretty straightforward test. It seems odd that your doc would do bloodwork to search for celiac, but not do the proper bloodwork for the allergy. You don't have to be eating wheat to have the allergy test.

 

And I don't agree that celiac has been ruled out. Just because you're not in a position to have the tests done doesn't mean you don't have it. Did your doc look at other bloodwork, like vitamin levels, for other signs of malabsorption? There are more ways to assume celiac without the traditional celiac blood test and biopsy.

1

Share this post


Link to post
Share on other sites

Thanks nvsmom, I like the sound of being a trailblazer lol. And yes, you made sense, I personally believe it's all part of a spectrum too.

 

Kitty, it was a previous doc who did the celiac bloodwork. We haven't done the wheat allergy test because my symptoms were fairly clear-cut: the last three times I tried to eat wheat for a challenge, my lips, face and eyes puffed up pretty bad and I got a rash on my stomach. Also a sore mouth and trouble swallowing. But you're right, maybe a blood allergy test is the next step.

 

He tested me for malabsorption (fecal fat test) which came back negative, but not vitamin levels. I agree that celiac hasn't been totally ruled out, I just don't think in my case it can ever be ruled IN.

 

I'm still trying to figure out why it matters to me either way, since I know the treatment is the same. I have a piece of paper saying I'm allergic to wheat if I ever need something like that, so I'm not sure why I'm feeling like some kind of "phony" until/unless I get a super-definitive diagnosis... :(

0

Share this post


Link to post
Share on other sites

I think Kitty was right on.  I want to add that genetic testing is not as accurate as the 98% quoted.  My genetic test did not match up to my biological daughter.  When I questioned the results I was told, "test has that 2% known missed, genes mutate, and every blood test has a 30% human error rate."  Add to that the that may be other unknown Celiac genes.

 

It matters when you haven't been given a clear cut answer.  You have no doubt it makes you ill, but you don't have the full understanding WHY it makes you ill.

0

Share this post


Link to post
Share on other sites
Ads by Google:


You have no doubt it makes you ill, but you don't have the full understanding WHY it makes you ill.

 

Yes, you hit the nail on the head... !

 

Going back over my symptoms, I'm starting to agree with Kitty and y'all. There is no doubt that I'm somewhere on the spectrum of gluten intolerance, and I'm pretty severely intolerant at that. I'll be meeting with my doc in a few weeks to discuss all this, but I think I just need to accept that he may not write "gluten" anywhere in my chart. At least "wheat allergy" is there.

0

Share this post


Link to post
Share on other sites

I am trailblazing right with you, got my NCGI diagnosis in January after negative gene tests. Didn't test for 9. So, looks like we will be first in the queue when the new tests for the celiac spectrum come out :)

Edited to add there is no test yet, but maybe one day (sigh)

0

Share this post


Link to post
Share on other sites




That's right, I'll be there too, heh heh.... I think Dr. Fassano (spelling?) is working on a test if I'm not mistaken.

 

I just got an email from my GI saying "No more wheat for you!!" I guess that's as close to an official diagnosis as I'm gonna get. Maybe I should frame the email lol.

1

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
      107,331
    • Total Posts
      935,524
  • Member Statistics

    • Total Members
      64,992
    • Most Online
      3,093

    Newest Member
    Trailblazer
    Joined
  • Popular Now

  • Topics

  • Posts

    • Newly diagnosed, who do I tell? I'm not talking friends & family. I am normally private about health matters but I feel it seems I need to tell so many people. Does anyone have a list? Some are obvious like doctor and dentist but one came up for me the other day when my massage therapist asked if I'd had any changes in my health and I said no but halfway through the session realized that, "Duh I should have mentioned Celiac! Clearly the lotion used could be an issue." So who is on your list to tell? Here's who I have so far: Doctor(s) Dentist Restaurant Servers Massage Therapists Hair Stylist Babysitters, Petsitters or Housesitters (anyone who might bring or prepare food in my home)      
    • I feel the same way! Newly diagnosed (gluten-free since July 1) and never had major GI symptoms mostly neurological issues and other very random stuff. So no red flags to tell me, "You just glutened yourself!" Or at least I haven't identified them yet. I'm not sure if I'm feeling better or not yet. I do have more energy but lots of anxiety and random symptoms that might be celiac related... but who knows. I'm just not sure if this is what "feeling better" is yet. I can't imagine what that is like... or will be like. And I keep reading about people "getting sick" when they are glutened but that is so vague. For me, I'm not sure I'll know if I've actually been glutened or not. I feel like I'm extremely careful but I'm not sure if I'm being over the top, or if I'm doing it right, or not enough and need to do more. I'd just like to get to a nice gluten-free baseline and note what that is like so that I can compare how I used to feel and how I might feel if glutened so that I'll know! Sorry, didn't mean to hijack your thread and provide no answers. I can just relate, that's all.
    • Last check(last fall sometime) my b12 and folate were fine. He did check my iron and it was fine. My potassium is technically normal, but lower than my cardio wants(I'm on q med that depletes it). Last time I had a full and extensive panel run was years and years ago. I recall my copper being high(but no one ever retested it), vit d and a couple others were low. I have tested positive for labs used to evaluate malnutrition, but it's been q couple of years since they've done those. Just going to put it on the back burner for now I guess. Can't afford to lose much more weight, but they tend to get more serious the lower my BMI goes(not on purpose, I'll have periods where I can gain a bit because I'm not vomiting a lot. Past two days I've been throwing up again after I eat.) Maybe my next colonoscopy will finally show something useful.  It's just 3 years this time and I've been arguing about my gut for 18 years now so what's a little More? 
    • Re. gorilla munch - Made with corn, says gluten free on the box, I don't know why it wouldn't be. It's quite yummy. Corn pops and Post golden crisp used to be my favorites, before celiac.
    • I buy the Chex cereals( except wheat). I had recently been buying Puffins from Barbara's bakery but got a very unsatisfactory answer to my question about where they source their oats so I have decided to stop buying them. See below.... "Thank you for your recent email about the oat flour in our Puffins cereal.  We appreciate the time you took to contact our company.

      Approximately 90% of our ingredients are sourced from North America. However obviously there are some crops that do not grow here, and items that are not manufactured here. In those cases, we source from other areas, mainly UK, EU and South America. Regardless of where the supplier is located, we have a very robust Supplier Assurance Program that ensures that we purchase only from approved, high quality suppliers. 

      We thank you again for your comments and hope you continue to enjoy our products.  If, at any time, we can be of further assistance, please don't hesitate to contact us again."
  • Upcoming Events