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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. yellowstone
      - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive...
    2. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily...
    3. Wheatwacked
      - Wheatwacked replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have...
    4. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      Thanks for your input.
    5. trents
      - trents replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,063
    • Most Online (within 30 mins)
      7,748
    JTL1976
    Newest Member
    JTL1976
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Celiac disease symptoms

      By Wheatwacked · Posted

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      Thanks for your input. 
    • trents
      Celiac disease symptoms

      By trents · Posted

      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly flareups.
×
×
  • 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.