Jump to content

  • 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):

Finally Seeing A Gi -- Any Advice?

gatita

Recommended Posts

gatita Enthusiast
gatita
Posted

I've been gluten-free for six months now and my joint and GI symptoms are much better, though the the GI ones still flare up. I was never endo'd, only had three blood tests (anti-gliadin IgA,TTG and total IgA) that were normal; and then a followup one for anti-gliadin IgA that was a high positive.

My doc couldn't do the endo because my duodenal ulcer was too inflamed (and he wondered if maybe the 'ulcer' is actually villi damage). So he had me try going gluten-free, and after a few months of that showed intolerance, it was too late to do more blood tests. I know, I know... it's all bass ackwards!

So I'm pretty sure my official diagnosis says 'gluten intolerant' without a definitive rule-out of celiac.

I can no longer tolerate wheat or gluten at all, so a gluten challenge would be hard.

Soooo.... It's taken me months to finally get a GI appointment, now what should I ask him to do?

I'd like to get nutrition testing (I know people have often posted here which tests to get but darn, I'm having a hard time finding them via search).

Are there any other tests/services I should ask him for?

I'm also worried he's an "IBS guy" and will just try to put me on IBS drugs, but there doesn't seem to be any celiac expert in our small county.

Thanks for listening y'all... :)

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

You will need to test levels of vitamins A, B's (especially B12 and folate), D, E and K, and iron/ferritin, potassium, magnesium, calcium, zinc. Also get your thyroid checked (TSH, free T3, free T4 and TPO antibodies).

gatita Enthusiast
gatita
Posted
  • Author

You will need to test levels of vitamins A, B's (especially B12 and folate), D, E and K, and iron/ferritin, potassium, magnesium, calcium, zinc. Also get your thyroid checked (TSH, free T3, free T4 and TPO antibodies).

Thank you! I wouldn't even have thought of thyroid...

mushroom Proficient
mushroom
Posted

Thank you! I wouldn't even have thought of thyroid...

Thyroid problems are probably the most common co-rider autoimmune problem for celiacs. :)

And by the way, don't accept any "IBS" prescriptions. Just tell him you prefer to get to the bottom of problems rather than mask them.

Takala Enthusiast
Takala
Posted

Take the test results from the other doctor, too, so he doesn't try starting some Wild Goose Chase.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Maybe write down your questions. I always forget by the time I get in the office. My new GI took my paper and wrote to me with answers to all my questions. Wow.

gatita Enthusiast
gatita
Posted
  • Author

Thanks for the good ideas!

I did print out my test results and will show him. Also wrote up a one-page health history starting with the lactose intolerance I was born with, LOL. (Couldn't even drink mother's milk).

I will also print a list of questions (including the list of tests you've given me).

Mushroom, I do plan to push back on the IBS thing and am not at all interested in their IBS drugs. It's bad enough I have to take the occasional Immodium when work etc. calls for it.

Mindwarp, that's amazing your GI wrote to you with answers. Wow is right.

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

Celiac.com Sponsor (A8-M):


gatita Enthusiast
gatita
Posted
  • Author

Just a quick followup. The doc was GREAT! He never mentioned IBS at all, yay!!!!!!! He read my one-page medical life story and my questions and really appreciated that I'd done that.

He suspects celiac despite my previous negative blood test. He believes I also have SIBO caused by my gluten intolerance. I'm doing antibiotics for that followed by minimum three months on probiotics. He ordered the HLA gene test, endoscopy, colonoscopy, malabsorption stool tests, and vitamin deficiency and h pylori tests. Whew....

I noticed that under allergies, my chart now says "wheat" which I'm glad of because now I have something official to show even if the other tests come up negative. He sounded like he will at the very least diagnose NCGI after the tests are over.

What was interesting was he said our local biopsy folks are incredibly well trained to spot celiac, and he thought that even though I've been gluten-free for six months they might still find some damage. That surprised me.

He left it up to me as to whether I want to do a 2-week gluten challenge before the endo, but said he doesn't usually recommend it for someone with symptoms as bad as mine. (He seems to be up on the latest research where some specialists are now saying two weeks is often long enough for a gluten challenge.)

Anyway, thanks again for the suggestions, it all went better than I'd hoped!

mushroom Proficient
mushroom
Posted

Oh, I am so glad you found a "keeper". Not many of us are that lucky! You go, girl !!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

That is great, so glad you got a wow too!!

I ended up with an NCGI diagnosis after genetic testing, which he took seriously, and sent me to adietician..

Hope all the testing and diagnosis go well, sounds like you really found a good one :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr. https://my.clevelandclinic.org/health/diseases/morgellons-disease
    2. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    3. trents
      - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      Hello Russ! Thank you so much for your reply. I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal...
    5. Russ H
      - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,046
    • Most Online (within 30 mins)
      10,442
    Urquhart
    Newest Member
    Urquhart
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Skin issues

      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
×
×
  • Create New...