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Newly Diagnosed


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#1 kasey1953

 
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Posted 08 August 2010 - 02:12 PM

I am 56, and recently had the celiac blood test. The results were postive for the Endomysial antibody IGA and the tTG igA was 48 ..they said normal was 0-3 Doctor said to start the glutten free diet and my symptoms would improve, which they have, altho i still have pain in my abdomen, and gas whenever i eat, and whatever i eat..i had the colonoscopy biopsy done and that doctor told me it was negative. He also said if i had been on the gluten-free diet for only a couple of weeks I wouldn't be feeling better if i really had celiac, maybe lactose intolerant, but i have read where sometimes people are both. Anyone else have or know of similar results. My son was diagnosed with celiac, he was 30 when diagnosed last year. I was almost relieved when i got the test results just to know what was making me sick, now i am not sure if celiac or lactose. Even my doctor said unusual that you would be positive for celiac in the blood test and negative with the biopsy.....thanks for your input..
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#2 Dixiebell

 
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Posted 08 August 2010 - 03:07 PM

If your blood test was positive then I would say you have celiac. I have heard that the damage can be patchy so that would explain why the biopsy was negative. You might want to give up dairy for a while and see if that helps. Also get a copy of all your tests and you can post them here and some of the experts can help you with those.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#3 mamaw

 
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Posted 08 August 2010 - 04:46 PM

Hi Kasey
When a biospy is done , usually the docs take three biospies. Not always do those three small biospies pick-up anything. Plus be thankful if you have no villi damage, that's a good thing. Next, you could maybe not be a celiac but be gluten sensitive or intolerant... there are now more gluten intolerant people then true celiac people.
Also, many celiac/ gluten sensitive people can not do dairy. Dairy is broken down at the tips of the villi, gluten is broken down at the tips of the villi as well.
My suggestion would be try the gluten-free diet for 3 to 6 months & be very strict, cut out dairy as well & then see at the ending period if you feel better. At that point you could try a little dairy & then again see how you feel. Another way would be to do an elimination diet....and see how you feel.

Your Dx's is not unusual, it happens alot!

hth
blessings

mamaw
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#4 kasey1953

 
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Posted 08 August 2010 - 08:39 PM

Hi Kasey
When a biospy is done , usually the docs take three biospies. Not always do those three small biospies pick-up anything. Plus be thankful if you have no villi damage, that's a good thing. Next, you could maybe not be a celiac but be gluten sensitive or intolerant... there are now more gluten intolerant people then true celiac people.
Also, many celiac/ gluten sensitive people can not do dairy. Dairy is broken down at the tips of the villi, gluten is broken down at the tips of the villi as well.
My suggestion would be try the gluten-free diet for 3 to 6 months & be very strict, cut out dairy as well & then see at the ending period if you feel better. At that point you could try a little dairy & then again see how you feel. Another way would be to do an elimination diet....and see how you feel.

Your Dx's is not unusual, it happens alot!

hth
blessings

mamaw


Thanks for your reply!
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#5 kasey1953

 
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Posted 08 August 2010 - 08:41 PM

If your blood test was positive then I would say you have celiac. I have heard that the damage can be patchy so that would explain why the biopsy was negative. You might want to give up dairy for a while and see if that helps. Also get a copy of all your tests and you can post them here and some of the experts can help you with those.




Thanks for your reply. I am thinking if the blood test was positive, i should stick with the gluten free diet as well as giving up dairy for a while.
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#6 Skylark

 
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Posted 09 August 2010 - 12:25 PM

Having both anti-TTG and anti-endomysial means you're definitely celiac. Anti-endomysial antibodies are very specific to celiac disease and some doctors say that a biopsy isn't even necessary if you have them. Biopsies can come up false negative. Think of it as looking at a postage-stamp sized area of a tennis court. It's really easy to miss damage if it's patchy. You need to avoid gluten carefully as celiac disease puts you at higher risk for osteoporosis and other autoimmune diseases.

You may also be lactose intolerant or sensitive to all dairy. Try eliminating them and see how you feel.
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#7 frieze

 
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Posted 10 August 2010 - 07:09 AM

did you have the colonoscopy that you mentioned, or an endoscopy (oral)?
because celiac is not dx with a colonoscopy
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#8 cassP

 
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Posted 10 August 2010 - 09:00 AM

you can MOST DEFINITELY be a Celiac and feel better after only 2 weeks Gluten Free!!! it's true that many Celiacs take 3 weeks to several months to feel completely healed- BUT- you can DEFINITELY feel an improvement pretty quickly! that was an odd statement from your doc.
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#9 kasey1953

 
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Posted 16 August 2010 - 08:11 PM

Having both anti-TTG and anti-endomysial means you're definitely celiac. Anti-endomysial antibodies are very specific to celiac disease and some doctors say that a biopsy isn't even necessary if you have them. Biopsies can come up false negative. Think of it as looking at a postage-stamp sized area of a tennis court. It's really easy to miss damage if it's patchy. You need to avoid gluten carefully as celiac disease puts you at higher risk for osteoporosis and other autoimmune diseases.

You may also be lactose intolerant or sensitive to all dairy. Try eliminating them and see how you feel.




thanks for your input.....i have stayed away from gluten and the dairy and slowly starting to feel better,,still have pains in my abdomen, but not the constant pain.so that is good...thanks again ...
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#10 kasey1953

 
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Posted 16 August 2010 - 08:14 PM

you can MOST DEFINITELY be a Celiac and feel better after only 2 weeks Gluten Free!!! it's true that many Celiacs take 3 weeks to several months to feel completely healed- BUT- you can DEFINITELY feel an improvement pretty quickly! that was an odd statement from your doc.





thank you for your comment...i also thought is was very odd for the doc to
tell me that...i am glad someone also thought it was strange..makes me believe
i haven't totally lost my mind...you know some times when you try to explain
how you feel to a doc they look at you like ..is this all in thier head..but
i can assure it what i felt was very real..and i don't go to the doc unless
it is really beyond what i can handle!!!!!
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#11 kasey1953

 
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Posted 16 August 2010 - 08:18 PM

did you have the colonoscopy that you mentioned, or an endoscopy (oral)?
because celiac is not dx with a colonoscopy







just the colonoscopy,,doctor said that would confirm the blood test diagnosis,
but as i said,,,blood test positive, colonoscopy negative...i am sticking with
the gluten diet and also staying away from dairy....thanks for your comment
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#12 cassP

 
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Posted 17 August 2010 - 08:37 AM

ya! like several posters said above-> Celiac is NOT diagnosed from a colonoscopy biopsy... ONLY from several biopsies in the Small Intestine thru an Endoscopy.
but it really doesnt matter- with the +EMA & a Ttg of 48- i would diagnose u with Celiac
i would advise u find a better educated GI doc- esp, cause u might want to see a good one in the future- ALSO- get yourself your own paper copies of your GI's blood test results & colonoscopy results- so u can have your own file- and a future doc can know your full history & know that you have Celiac- as it may or may not affect future tests & medications & treatments.
:)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#13 Marz

 
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Posted 17 August 2010 - 11:48 AM

just the colonoscopy,,doctor said that would confirm the blood test diagnosis,
but as i said,,,blood test positive, colonoscopy negative...i am sticking with
the gluten diet and also staying away from dairy....thanks for your comment


Woah, that's a very uneducated doctor 0.o I'm surprised he didn't do a IgE blood test (done for wheat allergies, not celiac) and call it a day when it came back negative for you! :D

Agreed with the others, those blood tests you did are highly specific for celiac disease. You are producing antibodies against your own tissue. It's pretty seriously celiac disease :) (Happy face because you know now what's wrong with you, not because you have celiac disease :P )
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant




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