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

First Visit To The Gi Doc...


Myrna

Recommended Posts

Myrna Newbie

I visited the GI doc for the first time today. I have to say I'm a little confused.

To begin I have blood tested negative to Celiac. Also, my blood looks good, no anemia, thyroid problems, etc.

My regular doctor said that blood test can be inaccurate and has a patient that test neg blood, pos biopsy. So she referred me to a GI doc to continue to check out Celiac or whatever else is giving me chronic D, gas, bloating, burning stomach etc. She said too that the fact that I hadn't been eating well before the test might have caused it to be negative.

So I saw the GI doc and he says I have GERD and is going to get me a colonoscopy and check for colitis and giardiasis. And if that all checks out okay then possibly say I have IBS. He said my blood test says negative so I definitely DON'T have Celiac. I guess my reg doc did a good full panel test for Celiac, so he said it's 99% accurate. He said the old test might be inaccurate, but not the new.

I'm just confused about the discrepancy between the 2 docs. I tried to tell him what my reg doc said, but he just cut me off and said I couldn't possibly have Celiac. He did say I might be carbohydrate intolerant. I've never heard of it before. He said it was probably the reason for the bloating & gas. He said it was a problem digesting bread, pasta, and rice, then I said I don't have a problem eating rice. Then he sort of retracted and said it was mainly just wheat in pasta and bread.

I'm confused about the accuracy of the blood test, is the GI doc right or my Reg doc? Is the "new" test really that accurate?

Does anyone know about carbohydrate intolerance? Is there a test for this (the GI doc didn't mention it, I didn't think to ask)?

Also, this is a little aside, but the GI doc didn't know what my appendix scar was. And when I told him, he seemed confused and said the appendix was on the other side (but the surgeon needed to make 3 incisions, one of them being on the "wrong" side) I guess it just made me doubt this doc's knowledge a bit- shouldn't a GI doc know the basics about how an appendix is taken out?

Sorry if this is long. Doctors and this whole medical stuff is very confusing, and I'm very new to all this. Thanks in advance!


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



Celiac.com Sponsor (A8-M):



Katsby Apprentice
I visited the GI doc for the first time today. I have to say I'm a little confused.

To begin I have blood tested negative to Celiac. Also, my blood looks good, no anemia, thyroid problems, etc.

My regular doctor said that blood test can be inaccurate and has a patient that test neg blood, pos biopsy. So she referred me to a GI doc to continue to check out Celiac or whatever else is giving me chronic D, gas, bloating, burning stomach etc. She said too that the fact that I hadn't been eating well before the test might have caused it to be negative.

So I saw the GI doc and he says I have GERD and is going to get me a colonoscopy and check for colitis and giardiasis. And if that all checks out okay then possibly say I have IBS. He said my blood test says negative so I definitely DON'T have Celiac. I guess my reg doc did a good full panel test for Celiac, so he said it's 99% accurate. He said the old test might be inaccurate, but not the new.

I'm just confused about the discrepancy between the 2 docs. I tried to tell him what my reg doc said, but he just cut me off and said I couldn't possibly have Celiac. He did say I might be carbohydrate intolerant. I've never heard of it before. He said it was probably the reason for the bloating & gas. He said it was a problem digesting bread, pasta, and rice, then I said I don't have a problem eating rice. Then he sort of retracted and said it was mainly just wheat in pasta and bread.

I'm confused about the accuracy of the blood test, is the GI doc right or my Reg doc? Is the "new" test really that accurate?

Does anyone know about carbohydrate intolerance? Is there a test for this (the GI doc didn't mention it, I didn't think to ask)?

Also, this is a little aside, but the GI doc didn't know what my appendix scar was. And when I told him, he seemed confused and said the appendix was on the other side (but the surgeon needed to make 3 incisions, one of them being on the "wrong" side) I guess it just made me doubt this doc's knowledge a bit- shouldn't a GI doc know the basics about how an appendix is taken out?

Sorry if this is long. Doctors and this whole medical stuff is very confusing, and I'm very new to all this. Thanks in advance!

If I were you I'd probably try to see a different GI. My Dr. told me that 30% of patients with bloodtest tested negative though they still had celiac disease.

lizard00 Enthusiast

Do you have your blood tests? I was also negative...the tests re pretty inaccurate for a number of reasons. If you had your results, you could post them here.

I agree, I would maybe try to find another doctor. The first one I went to was not so good. So, I was referred to another one and he is wonderful. Definitely worth a look.

Ursa Major Collaborator

Those blood tests are very accurate in a way. If they are positive, they are just that, positive. There are virtually no false positives (that is were the 99% accuracy comes from). But there are TONS of false negatives! A negative blood test for celiac disease can NEVER rule out celiac disease, just as a negative biopsy can't rule it out, because those biopsies are hit and miss, and it is easy to miss the damaged spots in the intestine.

That GI is a moron. Find a new one. If he still 'diagnoses' people with IBS, that confirms that he doesn't know what he is talking about. IBS is a bunch of symptoms which have a CAUSE. If your bowel is irritated, something is obviously irritating it. You need to find out what it is, so you can eliminate it and get well.

Beth in NC Contributor
Do you have your blood tests? I was also negative...the tests re pretty inaccurate for a number of reasons. If you had your results, you could post them here.

I agree, I would maybe try to find another doctor. The first one I went to was not so good. So, I was referred to another one and he is wonderful. Definitely worth a look.

Hey, Liz! Can you pm me the name of your doc you like so much. I live right around the corner from where you said he/she was and I'm kinda anticipating a change.

I would have thought mine would have warned about the lactose intolerance...but he didn't. I mean..they ARE the same villi. I just want a doc who is up on things.

Myrna Newbie

Thanks! That was my understanding that false negatives are common. It seems he wants to diagnose me with a variety of diseases (GERD, IBS, Carb Intolerance) that all seem to be tied to celiac, but not say it's celiac because of one blood test. I know I don't have a degree in medicine and I don't know if I do have celiac or a food intolerance, but a lot of the gi symptoms really fit celiac sprue.

Oh, also I forgot to mention, I thought it was odd he said celiac sprue is an allergy. From everything I've read so far says its not an allergy, but an autoimmune disease. I thought that was a whole other thing, right?

It's all so frustrating. I'm almost positive my problems are dietary in some way, at the very least, related to wheat. I would like to just start on the diet and feel better (like my 5day non-gluten test run), but I really want a diagnoses. I guess I'm tired of feeling sick and waiting for doctor appointments and tests! It's taken 7 weeks just to see this guy and another 11 days to get the colonoscopy. (sorry a little venting here!)

I think I'll be calling my regular doc tomorrow to ask a few questions and see what she has to say too.

ravenwoodglass Mentor
Thanks! That was my understanding that false negatives are common. It seems he wants to diagnose me with a variety of diseases (GERD, IBS, Carb Intolerance) that all seem to be tied to celiac, but not say it's celiac because of one blood test. I know I don't have a degree in medicine and I don't know if I do have celiac or a food intolerance, but a lot of the gi symptoms really fit celiac sprue.

Oh, also I forgot to mention, I thought it was odd he said celiac sprue is an allergy. From everything I've read so far says its not an allergy, but an autoimmune disease. I thought that was a whole other thing, right?

It's all so frustrating. I'm almost positive my problems are dietary in some way, at the very least, related to wheat. I would like to just start on the diet and feel better (like my 5day non-gluten test run), but I really want a diagnoses. I guess I'm tired of feeling sick and waiting for doctor appointments and tests! It's taken 7 weeks just to see this guy and another 11 days to get the colonoscopy. (sorry a little venting here!)

I think I'll be calling my regular doc tomorrow to ask a few questions and see what she has to say too.

You REALLY need to find another GI. He is not even considering celiac, if he was he would do a endo along with the colonoscopy. This one is clueless and IMHO all you are going to get from him are big bills and lots of scripts.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

I wouldnt let that GI doctor stick anything up/down ANY of my orafices. :o

You should look for a new one. Im wondering if he was young and right out of med school.......Or VERY OLD and "set in his ways".

I tested NEG on blood but POS to the diet.

Myrna Newbie

I called my regular doctor today and got another referral. I tried asking for a doc with more experience with Celiac, but she said there wasn't one in the area. Hopefully the next one will at least consider an endoscopy.

I did see a nutritionist today for my hypoglycemia, but mentioned my symptoms and what the GI doc had said. She said it sounded a lot like celiac and couldn't believe he wouldn't do the biopsy. She, of course, also said to get another doc.

ShayFL: LOL! He was about 45 years old. Funny you say that! When I first saw him, my first impression was he looks like he should be up on the whole celiac thing. He doesn't look that old or old school. That was before he spoke. :)

Thanks all again for the advice, it's reassuring hearing it.

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. - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

    2. - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

    3. - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

    4. - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar

    5. - Mynx replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Hidden Gluten in distilled vinegar


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,873
    • Most Online (within 30 mins)
      7,748

    Charli.stoz09
    Newest Member
    Charli.stoz09
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
×
×
  • Create New...