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Retesting Celiac Blood Work?

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I will try and make this as short as possible. When I got tested 18 months ago, I had been gluten free for 6 weeks already. My blood work came back borderline Celiac disease as the GI doctor put it. He wanted me to have the biopsy, but I was scared to start eating gluten again and felt great gluten free. My 2 year old son also has celiac disease.

Some of the things that improved once gluten free, are bone pain, bloating and gas(major improvements), heartburn, anemia, nausea, abdominal pain, etc. (it has been awhile and I can't remember everything).

My IGg was 66, normal was below 20.

My Ttg (the one most specific to celiac) was 16, (abnormal was 18 and up). My GI doctor told me that people that don't have celiac disease, usually have a number of 0.

I have been gluten free for 18 months, but still seem to feel like I am getting gluten from time to time. I don't eat out hardly ever. I try to be very careful. I will get alot better and be fine for a month or two and then it seems like some GI problems will be around. Mainly heartburn and feeling as if I have been gluttened at least every week or two. I went to see the doctor and had my tests redone and all my numbers were completely normal. (different doctor, because we moved).

Anyway, for those of you that were retested after you were gluten free for a year or more, were your numbers completely normal. From what I have read, if you are gluten free, then your numbers should be normal.

I should have an endoscopy done, but everytime I almost do one, my digestive system gets somewhat better.

I think I eat too much dairy and drink too much caffeine, so maybe that is what is causing some of the digestive problems. The problems I am having now are different then before going gluten free.

Sorry this got so long.



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My bloodwork back in 2004 was over 100. Testing this summer had the number down to 13.


positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."


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Thanks Karen, I feel as if I got really sick after my 3rd son was born. That is when I really started having symptoms of celiac disease. I wasn't sick for years and years. My 3rd son is also the one with Celiac disease and so I found out pretty early.

How are you feeling. Are you still sick? I know you struggle still and hope you are getting along ok. It really stinks having some kind of health problem the majority of the time. I wish I could go back to when I was 27 y.o. I felt great then.

Take care,


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My score was still really high after 1 year, the doctor said to check what I was eating again. I then thought that I might be glutening myself at work, I work in a grocery store and touch bags of flour on a regular basis- made me think anyway. I really thought that I had been really careful in my eating...I'll deep working at it. 116, 20 is normal :blink:

Brenda Diagnosed Celiac 2005 Woodville, Massachusetts

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I haven't been retested yet...it won't be a year until Jan. But, I wanted to say that I was still getting occasional heartburn until I quit drinking caffeine on a daily basis. Now I can have a latte every so often with no heartburn, but no pop still. Maybe try taking it out of your diet to see if it helps?


"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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My first TTG number was 10.5. (Anything over 7 on my doc's scale was positive). At my recheck my number was down to 2.3.

I feel like I get glutened every once in a while - but I noticed a big difference when I stopped drinking coffee altogether and just stick to tea.


Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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