Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

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:

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




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
      103,880
    • Total Posts
      919,458
  • Topics

  • Posts

    • Celiac - How many symptoms can there be?
      As you doubtless know now, there are so many ways celiac can present, here's as big a list as I could find online. It would probably be quicker to list what isn't a factor For me personally, nausua, check, left sided back hip pain (my laymans theory here is that celiac is affecting the sciatic nerve which runs from lower back down leg) , check, chest pain also - but for me this comes in short bursts more I guess like heartburn - I thought I was having heart attacks... Check to the rest too... And, for what its worth, other things like being prone to bronchial infection oh hell yes.  I'm currently in the glutened / affected by something group myself so I can only share the advice I've been given. Start a food diary and see if you can track down anything diet related that may be affecting you. Eat as clean as you can, ease up on alcohol, just try and give yourself the best chance of recovery. Have a google of 'heal my gut' diet tips too, you're in the recovery phase at the moment. All the best, at least there's comfort in knowing you're not alone!   Matt  
    • Depression / anxiety issues
      Thanks for the advice Matt, I will be sure to take it all onboard. It's really good to talk to others that have had similar experiences. I'm currently upping my b12 and also taking a additional (gluten free) multi and b complex, also omega 3s and Vitiam D3. I had been noticing small improvements that I forgot to mention in my previous post. I noticed that I fall asleep now much easier than before going gluten-free, I also have moments where my body feels more calm, then blood in my stool has stopped I haven't had any in 10 weeks. My mind was constantly fixated on negative thoughts for the past 2 years and they slowly began lifting from all day negative thoughts to maybe half a day of negative thoughts if that makes sense, but this pass week and a half they have come back, I'm also finding my self very nervous again around other people I'm hoping this will pass. The anxiety / depression is the worst symptom for me I would not wish it on my worst enemy, if that went away I would be the happiest man in the world. I found it very hard to talk to people about my mental health issues at work before I lost my job as I found some people stigmatise me and don't understand or really care, but I figure i don't need narrow minded people like that anyway, and as a man its hard to open up but my wife is very supportive and encouraging. Thanks again for the advice really apricate it
    • Depression / anxiety issues
      G'day Chris and welcome to the forum. You have found what I think is the single best resource on the web for advice, support and understanding for this condition. There is so much info here it's difficult to know where to start, but that's what this thread is for, please check it out. I think I got the recommendation for 'Real life with Celiac Disease' by Dennis and Leffler there, I'll second that, there's a lot of very useful info in there which helps to answer a lot of your questions. May be useful for your partner also. Chapters are short and informative so you can dip in and out.  There will doubtless be more advice to come from others with more experience but there's a few things which occur. Firstly, 10 weeks is very early days. Your body has been under an assault for many, many years. Your immune system has been working overtime and like so many others you've only reached diagnosis after reaching a crisis point. You are now healing but it won't be instant and it won't be without ups and downs, speedier and slower phases.  Second, being strict on gluten is essential, but it's only one part of the puzzle. You also need to eat really healthily and try to heal your gut. As you remove gluten you may find that your body starts telling you that other foods are also an issue. Don't panic, it doesn't mean that will always be the case. But you need to approach the next 6 months as a period where you're giving your body the easiest ride possible. That may mean taking probiotics, bone broths or it could also mean avoiding dairy or other foods, at least until your body has had a chance to heal. If you think you may still be getting gluteny effects keeping a food diary, noting what you eat, when and how you feel would help to track down any further issues.  I too battled through the anxiety, had an all too brief moment of bliss as the diet kicked in, then faced a bumpier recovery period in the weeks that followed. It gets easier but it's still difficult for me from time to time. I tried to articulate some of this recently here, it's a long read but maybe some of it will strike a chord. It will get better and you will become better equipped to deal with it. If you're like me you'll find other things getting better over time that you would never have thought to connect to gluten. Now, I've been exceedlingly nice here and not mentioned the England Rugby drubbing but I can feel my self control beginning to slip. So I'll leave it there   Matt
    • Depression / anxiety issues
      Thanks for the advice Irene. I will look into that book. I know I'm a long away from healed but I got my hopes up when I felt better in that first week, it's just constantly a battle. I am hoping and praying that I get better soon 
    • Celiac - How many symptoms can there be?
      Do you take digestive enzymes and probiotics? That may help. Have you met with a dietician for help figuring out how you're getting glutened?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,925
    • Most Online
      1,763

    Newest Member
    tr2v12
    Joined