Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Finally A Diagnosis! Sort Of...

gatita

Recommended Posts

gatita Enthusiast
gatita
Posted

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...

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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

kittty Contributor
kittty
Posted

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.

gatita Enthusiast
gatita
Posted
  • Author

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... :(

mommida Enthusiast
mommida
Posted

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.

gatita Enthusiast
gatita
Posted
  • Author

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.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gatita Enthusiast
gatita
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,782
    • Most Online (within 30 mins)
      7,748
    BH1951
    Newest Member
    BH1951
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Ok thank you.  Me either 
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.