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

Just Got Back From The Gi Dr. This Is What He Thinks.......


answerseeker

Recommended Posts

answerseeker Enthusiast

If you read my post the other day you will see the long struggle and long list of symptoms I've had. Had an appointment today with the same GI that did my endoscopy. He said that just because my bloodwork and biopsy were negative for celaic it doesn't mean that I don't have it. Could be not enough damaged done yet, especially since this started only about a month ago. Wow, perhaps I found a knowledgable doc huh? Even the foot cramps I get points to it because I have low calcium in my blood work. Also I'm still loosing weight. Today I'm down to 105. I have a ultrasound to rule out gallstones but he is really leaning towards celiac or non celaic gluten intolerance (I was shocked he actually knew what this was) he said even if it is IBS gluten still upsets that condition so still same treatment.

 

So he says gluten free diet trial for a month, if I improve then lifelong gluten free diet. If I don't then go back to see him.

 

on a sidenote, I thought oatmeal was naturally gluten free but I had the worst reaction to it the other day. I'm still not fully over it.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

If you read my post the other day you will see the long struggle and long list of symptoms I've had. Had an appointment today with the same GI that did my endoscopy. He said that just because my bloodwork and biopsy were negative for celaic it doesn't mean that I don't have it. Could be not enough damaged done yet, especially since this started only about a month ago. Wow, perhaps I found a knowledgable doc huh? Even the foot cramps I get points to it because I have low calcium in my blood work. Also I'm still loosing weight. Today I'm down to 105. I have a ultrasound to rule out gallstones but he is really leaning towards celiac or non celaic gluten intolerance (I was shocked he actually knew what this was) he said even if it is IBS gluten still upsets that condition so still same treatment.

 

So he says gluten free diet trial for a month, if I improve then lifelong gluten free diet. If I don't then go back to see him.

 

on a sidenote, I thought oatmeal was naturally gluten free but I had the worst reaction to it the other day. I'm still not fully over it.

 

 

It has to be gluten-free oatmeal.  It will say it on the package.  Oats use the same fields, farm equipment, silos, etc as wheat.  So unless the oats are certified gluten-free, don't eat it.

notme Experienced

good for you for finding a knowledgeable doc!  i was nearly dead from malnutrition when the light finally went off in my (family) doc's head.  3 years later and i feel like i'm still healing my guts, so good thing it has been caught before alot of damage has been done :)  

 

i still can't do oats, it seems.  tried them twice and have had no luck  :(  maybe try them again in......   january.....  so, some do well with it (I SURE MISS OATMEAL!) some don't.

 

good luck!  

dilettantesteph Collaborator

Something like 10% of celiacs react to the avenin in oats similarly to how they react to the gluten in wheat, barley and rye.  If you had a really bad reaction, you may be in this group.  If you try again, try just a little bit of gluten-free oats until you know that you can tolerate them.  I am in the oat sensitive group myself and I wish that someone had given me that advice.

answerseeker Enthusiast

Thanks. For now it's gluten free chexs or eggs for breakfast!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,931
    • 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...