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Finally Seeing A Gi -- Any Advice?


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9 replies to this topic

#1 gatita

 
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Posted 28 January 2013 - 01:53 PM

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... :)
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Diagnosed with wheat hates me 4/13


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#2 mushroom

 
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Posted 28 January 2013 - 03:42 PM

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).
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 gatita

 
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Posted 29 January 2013 - 01:06 AM

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...
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Diagnosed with wheat hates me 4/13


#4 mushroom

 
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Posted 29 January 2013 - 01:08 AM

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.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 Takala

 
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Posted 29 January 2013 - 03:28 AM

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

 
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Posted 29 January 2013 - 04:25 AM

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.
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 gatita

 
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Posted 29 January 2013 - 07:34 AM

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.
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Diagnosed with wheat hates me 4/13


#8 gatita

 
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Posted 30 January 2013 - 01:50 PM

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!
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Diagnosed with wheat hates me 4/13


#9 mushroom

 
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Posted 30 January 2013 - 02:25 PM

Oh, I am so glad you found a "keeper". Not many of us are that lucky! You go, girl !!
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#10 Celiac Mindwarp

 
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Posted 30 January 2013 - 06:40 PM

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 :)
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image




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