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

Would You Believe?


Claire

Recommended Posts

Claire Collaborator

Today I had an appt. with a GI specialist (new to this area - formerly with NIH). I was uneasy because my GP had written what I considered a prejudicial referral.

I did as I always do when going to a new doctor - I wrote up a case history - not too long but thorough. I filled out the required office forms and then included my history.

He sat down and read it thoroughly and then asked questions. They were good questions and he listened to the answers without interrupting! So far so good!

Praise God - he didn't say I have IBS!. In fact he said he was quite sure I did not have that or colitis or any of the other things you usually get from these guys. He said I was quite right that I don't have symptoms to support any such diagnosis.

I was quite surprised by what came next. He said that in spite of a negative Celiac gene test - it may still be Celiac. He talked about the wide variety of celiac symptoms - from the worst to none at all. He talked about the fact that celiac is only recently studied - that there are celiac genes that have not been clearly identified.

He thought blood tests are iffy - very dependent on the technicians who process the sample. My ataxia of unknown origin also got his attention - as ataxia is often gluten related.

Two tests are scheduled for the end of this month - Colonoscopy and endoscopy. Both tests will be done on the same day. He was very thorough in explaining (though I already knew) that this would in no way address my multiple food intolerance problem. That this was to check that I have no serious inflammation, polyps or malignancy.

He said food intolerances (as opposed to allergies) are really not understood very well - especially the cause. At least he didn't say they don't exist like one doctor told me.

What he said about endoscopy should interest some of you here. I have been on a limited gluten diet for years but gluten-free since August. He said that was no problem as there would not be significant healing in 6 months to negate the test. He said one to two years to heal.

There has been much discussion here on the forum as frustrated newly diagnosed people look for very immediate results from the gluten free diet. While you may feel a lot better the healing process is not a rapid one. He confirmed for me what the doctor at IMMUNO LABS told me when I had my tests done there. He flatly said - two years.

He was also very understanding about the fact that I have failed colonoscopy on earlier attempts. I get sick and wind up with a stomach cleanse but not a colon cleanse! He ordered a prep that has quite a bit of water to drink but no mixtures of stuff. I sure hope I can handle it.

Oh - mustn't forget. I spoke to him about gluten sensitivity. He said as far as he was concerned - that too is Celiac and should be identified that way - and perhaps will be at some time.

End of lengthy report. If you are still with me - thanks for reading all this. Hope it helps somebody. Claire


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



Celiac.com Sponsor (A8-M):



Guest Viola

Wow, that was a super check-up. Nice to know there are some out there that are getting educated. Good for you finding him! :D

Claire Collaborator
Wow, that was a super check-up. Nice to know there are some out there that are getting educated. Good for you finding him! :D

Like I said, "so far so good". I don't want to get overjoyed just yet but at least he is doing and saying the right things at this point. That is on the plus side to be sure. Claire

dlp252 Apprentice

Claire what a great post! Wow, this guy sounds great!

jerseyangel Proficient

Claire--So happy you found this guy! Thanks for posting about your appt. His answers to your questions and his opinions were interesting, and encouraging. I took note of his '2 year' healing time--could answer why my progress is up and down after 8 months.

wolfie Enthusiast

Sounds like a wonderful appointment! How nice to have someone listen to you and take you serioiusly. I have talked about my multiple food intolerances for years without anyone saying much at all....they all blamed it on IBS.

Keep us posted on your progress.

Where are your from and where is your dr?

Today I had an appt. with a GI specialist (new to this area - formerly with NIH). I was uneasy because my GP had written what I considered a prejudicial referral.

I did as I always do when going to a new doctor - I wrote up a case history - not too long but thorough. I filled out the required office forms and then included my history.

He sat down and read it thoroughly and then asked questions. They were good questions and he listened to the answers without interrupting! So far so good!

Praise God - he didn't say I have IBS!. In fact he said he was quite sure I did not have that or colitis or any of the other things you usually get from these guys. He said I was quite right that I don't have symptoms to support any such diagnosis.

I was quite surprised by what came next. He said that in spite of a negative Celiac gene test - it may still be Celiac. He talked about the wide variety of celiac symptoms - from the worst to none at all. He talked about the fact that celiac is only recently studied - that there are celiac genes that have not been clearly identified.

He thought blood tests are iffy - very dependent on the technicians who process the sample. My ataxia of unknown origin also got his attention - as ataxia is often gluten related.

Two tests are scheduled for the end of this month - Colonoscopy and endoscopy. Both tests will be done on the same day. He was very thorough in explaining (though I already knew) that this would in no way address my multiple food intolerance problem. That this was to check that I have no serious inflammation, polyps or malignancy.

He said food intolerances (as opposed to allergies) are really not understood very well - especially the cause. At least he didn't say they don't exist like one doctor told me.

What he said about endoscopy should interest some of you here. I have been on a limited gluten diet for years but gluten-free since August. He said that was no problem as there would not be significant healing in 6 months to negate the test. He said one to two years to heal.

There has been much discussion here on the forum as frustrated newly diagnosed people look for very immediate results from the gluten free diet. While you may feel a lot better the healing process is not a rapid one. He confirmed for me what the doctor at IMMUNO LABS told me when I had my tests done there. He flatly said - two years.

He was also very understanding about the fact that I have failed colonoscopy on earlier attempts. I get sick and wind up with a stomach cleanse but not a colon cleanse! He ordered a prep that has quite a bit of water to drink but no mixtures of stuff. I sure hope I can handle it.

Oh - mustn't forget. I spoke to him about gluten sensitivity. He said as far as he was concerned - that too is Celiac and should be identified that way - and perhaps will be at some time.

End of lengthy report. If you are still with me - thanks for reading all this. Hope it helps somebody. Claire

Rusla Enthusiast

Claire, that is awesome. Could you ask him to clone himself and send his clones to Canada. I would like to speak to one sane GI who doesn't roll their eyes at me.


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



Celiac.com Sponsor (A8-M):



Claire Collaborator
Claire, that is awesome. Could you ask him to clone himself and send his clones to Canada. I would like to speak to one sane GI who doesn't roll their eyes at me.

Wish I could! It was a good start. Hope it stays this positive. Claire

floridanative Community Regular

Ditto to what Rusla said - clone that doctor!!!

:lol::lol::lol:

debmidge Rising Star

Now that's a start for me to think about putting trust back into doctors.. just to think about it for now.

But, seriously, that's a very good start with a new doctor. Maybe there's hope...

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748

    Jamie B
    Newest Member
    Jamie B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.