I'll try to convince my doctor to do it (US military doctor) -- thanks for the advice!
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19 replies to this topic
#16
Chaff
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Posted 02 December 2012 - 09:26 PM
celiac (positive tTg, negative biopsy), hypothyroid, hereditary hemochromatosis
live in Okinawa, Japan; hope to resume training for ultra-marathon soon
casein-free, legume-free; 99% fructose-free
I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free
live in Okinawa, Japan; hope to resume training for ultra-marathon soon
casein-free, legume-free; 99% fructose-free
I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free
#17
GottaSki
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"Migratory flight complete."
Posted 02 December 2012 - 09:38 PM
Hi Amelia-
A military doctor - as well as many other docs respond well to preparation. When is your appointment?
List of symptoms.
List of necessary tests - both celiac and nutrient
If needed a few print outs from top Celiac Centers.
Never hurt.
Let us know if you would like a few items to bring along to your appointment.
A military doctor - as well as many other docs respond well to preparation. When is your appointment?
List of symptoms.
List of necessary tests - both celiac and nutrient
If needed a few print outs from top Celiac Centers.
Never hurt.
Let us know if you would like a few items to bring along to your appointment.
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#18
Chaff
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Posted 03 December 2012 - 03:01 AM
Hi Lisa -- thanks! It's my GI doctor, who is the only one for the Asia-Pacific region, and a really good guy. All the others I've seen immediately said I need to see a mental health professional (for anorexia and body image issues of all things), and only ordered tests after I begged them. He just heard me out and said -- why aren't you on any medication for all this?
Anyway, I gave him my notes and lists of symptoms and whatnot and he just handed it back to me without reading it and fired a bunch of questions at me. But I figure he knows what he's doing, since he did my endo like a pro.
At this point, I'm just getting my biopsy test back. If it's negative, I figure I'm "latent" celiac (i.e., they missed the bad patches); if it's positive, then I'm "celiac." But either way, I'm asking for a genetic test, testing for SIBO, and some good probiotics (no gluten-free ones in Japan I can find, and Amazon's freeze-dried ones are coming on the slow boat).
Does that sound like a good game plan? Or should I be doing something else?
(One doctor said my preparation...like measuring my distended belly...would make the other doctors think I was crazy, so I shouldn't mention it to them. This is what I'm dealing with. Argh.)
Anyway, thanks very much for the help.
Anyway, I gave him my notes and lists of symptoms and whatnot and he just handed it back to me without reading it and fired a bunch of questions at me. But I figure he knows what he's doing, since he did my endo like a pro.
At this point, I'm just getting my biopsy test back. If it's negative, I figure I'm "latent" celiac (i.e., they missed the bad patches); if it's positive, then I'm "celiac." But either way, I'm asking for a genetic test, testing for SIBO, and some good probiotics (no gluten-free ones in Japan I can find, and Amazon's freeze-dried ones are coming on the slow boat).
Does that sound like a good game plan? Or should I be doing something else?
(One doctor said my preparation...like measuring my distended belly...would make the other doctors think I was crazy, so I shouldn't mention it to them. This is what I'm dealing with. Argh.)
Anyway, thanks very much for the help.
celiac (positive tTg, negative biopsy), hypothyroid, hereditary hemochromatosis
live in Okinawa, Japan; hope to resume training for ultra-marathon soon
casein-free, legume-free; 99% fructose-free
I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free
live in Okinawa, Japan; hope to resume training for ultra-marathon soon
casein-free, legume-free; 99% fructose-free
I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free
#19
GottaSki
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"Migratory flight complete."
Posted 03 December 2012 - 06:38 AM
I think that is a great plan -- I never hand docs anything but medical journal papers 
The reason I have lists of symptoms, questions and tests in hand during appointments is to make sure I don't forget details or to ask questions. I let them know I had pictures when I started taking pics of rashes and they did want to see those...you just never know.
Regardless of your results, remove ALL gluten for at least three months (six is better) -- this is the only test for Non-Celiac Gluten Intolerance.
If only we could get our money back from dismissive doctors
Hang in there - keep documenting - I waited too long to document. This information may be of help with your future doctors. Also, if you ever decide to get a genetic test - no gluten challange is required
The reason I have lists of symptoms, questions and tests in hand during appointments is to make sure I don't forget details or to ask questions. I let them know I had pictures when I started taking pics of rashes and they did want to see those...you just never know.
Regardless of your results, remove ALL gluten for at least three months (six is better) -- this is the only test for Non-Celiac Gluten Intolerance.
If only we could get our money back from dismissive doctors
Hang in there - keep documenting - I waited too long to document. This information may be of help with your future doctors. Also, if you ever decide to get a genetic test - no gluten challange is required
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#20
Chaff
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- Advanced Members
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Advanced Community Member
Posted 03 December 2012 - 10:52 PM
Thanks for the advice!
celiac (positive tTg, negative biopsy), hypothyroid, hereditary hemochromatosis
live in Okinawa, Japan; hope to resume training for ultra-marathon soon
casein-free, legume-free; 99% fructose-free
I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free
live in Okinawa, Japan; hope to resume training for ultra-marathon soon
casein-free, legume-free; 99% fructose-free
I cope by drinking artisanal teas, hand-picked in Taiwan, all gluten-free
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