Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Back On The Gluten :(


AlysounRI

Recommended Posts

AlysounRI Contributor

Hi All:

Well, in preparation for meeting with the gastroenterologist on March 31st, I am back on the gluten .... oh well.

I went gluten-free for three weeks and I never felt so incredibly good but now, as I will be getting tested, I have to go back on it.

I bought a ham and provolone sub with all the fixings.

I looked at it and signed.

And then I bit into it.

Twenty minutes later ... bring on the aches and the fatigue ... the stomach distress has yet to come but I'm sure that it will be here soon. And now that I am back on the gluten my skin is breaking out in pimples, too ... and I'm just so fuzzy.

I AM glad that I went off of it so I can tell the GI guy what happened when I did, however.

Hopefully going back for the month will do it. And the blood tests will tell me something, and then there is the endoscopy/biopsy.

I am looking to put a name on this - am I truly celiac, am I wheat intolerant or is it all gluten to which I am intolerant?

I don't know what the tests will find just yet.

But it will explain what I have been feeling and going through for the past 20 plus years ...

And from the questionnaire that I was sent I wonder if my father's chronic kidney stones and gallbladder problems mean that he has a similar condition that was never diagnosed.

I'll report what the tests show.

I am interested to find out.

~Allison


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If you should become extremely ill please let the GI know. It sounds pretty clear that you have an issue with gluten and in the long run it doesn't matter whether you are celiac or 'gluten intolerant' (there are some of us who consider them the same thing) the need to be strictly gluten free is the same for both. It sounds like you have had good results from the diet so even if the test results are negative please go back to it when your testing is finished.

PS I really like your avatar. It looks just like my special kitty Benjamin who disappeared many years ago. It appears to be a painting. Did you do it? If you did you have a lot of talent, if you didn't you have great taste in art.

Faerybec Newbie

It is really tough isn't it. I am in the same situation. When I eat wheat or dairy I get nausea, pain then really sick. I have my gastroscopy and colonoscopy on next Thursday - should be tonnes of fun but at least we will know. I was diagnosed with irritable bowel syndrome 6 years ago, and went on my merry way. I have seen a handful doctors, in that time about my GORD (reflux) as well as the mouth and stomach ulcers I have had for almost a decade. It wasn't until my son was diagnosed and his doctor said he would like to see me 2, that it even entered my head. It is amazing that it just takes one doctor who knows what they are doing.

Best of luck with your test and 'the prep'.

AlysounRI Contributor

PS I really like your avatar. It looks just like my special kitty Benjamin who disappeared many years ago. It appears to be a painting. Did you do it? If you did you have a lot of talent, if you didn't you have great taste in art.

If I get extremely ill, I will contact the GI.

I am taking no joy in the pot of water boiling the stove waiting to receive the spinach ravioli I am having for dinner ...

As for the painting, I didn't do it (I can barely draw stick figures!!) - I found the jpg on amazon when they still had a card service.

All I remember is that is was by a Russian artist and it is a painting indeed.

You have a good eye, Raven!

I have only one cat now.

My beloved Maine coon, Ginsu, who was born in my neighbor's barn and who I took home when he was five weeks old, passed away last September of some sudden liver catacylsm.

My little guy even had jaundice ... I miss him terribly ...

Your Benjamin was a handsome fellow if he looked like the painting.

I'll most definitely report back on the testing.

You know, I just want a name for this - I've been fighting so many of the things associated with celiac disease for twenty plus years now!

And I want to put it to rest once and for all.

I'll here, don't worry!!

~Allison

AlysounRI Contributor

Best of luck with your test and 'the prep'.

Thank you Faery - I wish you the best of luck with your testing too.

And I hope that the rest of your time having to ingest the "poison" is somewhat bearable, but it really isn't anywhere close to that, is it?

Hugs go out to you!

~Allison

ravenwoodglass Mentor

It is really tough isn't it. I am in the same situation. When I eat wheat or dairy I get nausea, pain then really sick. I have my gastroscopy and colonoscopy on next Thursday - should be tonnes of fun but at least we will know. I was diagnosed with irritable bowel syndrome 6 years ago, and went on my merry way. I have seen a handful doctors, in that time about my GORD (reflux) as well as the mouth and stomach ulcers I have had for almost a decade. It wasn't until my son was diagnosed and his doctor said he would like to see me 2, that it even entered my head. It is amazing that it just takes one doctor who knows what they are doing.

Best of luck with your test and 'the prep'.

Welcome to the board. Please keep in mind the possibility of a false negative on both blood and biopsy is relatively high. Do be sure to try the diet after the test is done. With a diagnosed son chances are really good with your symptoms you are one of us.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,928
    • Most Online (within 30 mins)
      7,748

    Iandouglas
    Newest Member
    Iandouglas
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Heatherisle
      Her result for the TTG Ab (IgA) was 19. Lab range 0.0 - 0.7. U/ml. 
    • trents
      TTG would refer to a blood antibody test. Not valid if you are already eating gluten free or mostly so. DQH would refer to a genetic test to see if you possess either or both of the two genes that have been connected most strongly to developing active celiac disease. The genetic test is more of a rule out measure than a diagnostic test as about 40% of the general population have one or both of those genes but only about 1% of the general population develops active celiac disease. If you don't have the genes but gluten causes you issues then the conclusion is NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. So, the genetic testing helps with a differential diagnosis. I don't know about the 2P. 2 Pairs of genes?
    • Scott Adams
      Tell him to get me a case...just kidding! I wonder why they are not labelled gluten-free here in the USA? They don't have gluten ingredients.
    • Pamela Kay
      Glad this helped. There are lots of alternative breads out there, so someone has likely made some sort of paleo bread with no grain. And if you bake, experiment with some of the alternative flours to see what you can come up with. If you commit to the gluten-free diet 100%, you may want to do a bit of research on some of the tricker aspects of getting gluten out of your diet, such as cross contamination in the home kitchen (pots and pans, cutting boards, toaster, airborne flour). Don't feel you have to do everything at once, or let this overwhelm you. I've always said that going gluten free is a process, not a moment. The reason I mention this is that, if you think you are gluten-free, but still having symptoms, you may realize that even minute amounts of gluten cause a reaction for a while. Let me know if you have any questions.  Pam
    • Scott Adams
      The doctor was correct--if you are gluten-free the blood panel for celiac disease will not work, you would need to go on gluten challenge in order to be tested. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...