My Mother Died From Undiagnosed Celiac--do I Have It?

[zoobie]

My mother died from celiac complications at age 70 after 25 years of being misdiagnosed. She was told she had lupus, but in fact she had celiac. By the time they made the correct diagnosis, it was too late. She might never have been correctly diagnosed had it not been for the diagnosis of her granddaughter(my niece) at age 9 months. Subsequently my brother was diagnosed (in his 40s). Both are healthy and doing fine on gluten-free diets.

I have many of the celiac symptoms (particularly the chronic bloating/distention). I finally got my internist to test me, but I don't understand the results. My"TTG Antibody, IGA" is negative, but my "Gliadin Antibody (IGA)" has come back positive in 2 different tests, a year apart. My internist says this means I don't have it, but I am still worried.

Could someone please direct me towards a definitive test, if there is such a thing?

Thank you very much.

[Wolicki]

My mother died from celiac complications at age 70 after 25 years of being misdiagnosed. She was told she had lupus, but in fact she had celiac. By the time they made the correct diagnosis, it was too late. She might never have been correctly diagnosed had it not been for the diagnosis of her granddaughter(my niece) at age 9 months. Subsequently my brother was diagnosed (in his 40s). Both are healthy and doing fine on gluten-free diets.

I have many of the celiac symptoms (particularly the chronic bloating/distention). I finally got my internist to test me, but I don't understand the results. My"TTG Antibody, IGA" is negative, but my "Gliadin Antibody (IGA)" has come back positive in 2 different tests, a year apart. My internist says this means I don't have it, but I am still worried.

Could someone please direct me towards a definitive test, if there is such a thing?

Thank you very much.

Here is a good link:

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

According to this link, if you have a positive IGA then you have a 97 percent chance of having Celiac. You could have an endoscopy, or enterolab testing. I was satisfied with a positive IGA. It's up to you if you want to do more testing. I have read that there are rarely false positives.

[nasalady]

My mother died from celiac complications at age 70 after 25 years of being misdiagnosed. She was told she had lupus, but in fact she had celiac. By the time they made the correct diagnosis, it was too late. She might never have been correctly diagnosed had it not been for the diagnosis of her granddaughter(my niece) at age 9 months. Subsequently my brother was diagnosed (in his 40s). Both are healthy and doing fine on gluten-free diets.

I have many of the celiac symptoms (particularly the chronic bloating/distention). I finally got my internist to test me, but I don't understand the results. My"TTG Antibody, IGA" is negative, but my "Gliadin Antibody (IGA)" has come back positive in 2 different tests, a year apart. My internist says this means I don't have it, but I am still worried.

Could someone please direct me towards a definitive test, if there is such a thing?

Thank you very much.

With several close family members diagnosed with celiac disease, you are at very high risk of developing celiac if you do not have it already. The symptoms say you probably do. False negatives are common in the standard blood tests and biopsies for celiac disease.

The best way to tell if you are either gluten intolerant or celiac is to go gluten free for a couple of weeks, and then go back on gluten. If you feel better gluten free and worse on gluten, you should avoid gluten! Simple!

Your mother is a prime example of just how difficult it can be to get the actual, firm, "gold-standard" diagnosis of celiac disease. Why put yourself through that? Have you tried the gluten free diet yet?

Here's a great link to get you started if you want to try it:

Open Original Shared Link

Best wishes.....I do hope that you feel better soon!!

JoAnn

[homemaker]

With several close family members diagnosed with celiac disease, you are at very high risk of developing celiac if you do not have it already. The symptoms say you probably do. False negatives are common in the standard blood tests and biopsies for celiac disease.

The best way to tell if you are either gluten intolerant or celiac is to go gluten free for a couple of weeks, and then go back on gluten. If you feel better gluten free and worse on gluten, you should avoid gluten! Simple!

Your mother is a prime example of just how difficult it can be to get the actual, firm, "gold-standard" diagnosis of celiac disease. Why put yourself through that? Have you tried the gluten free diet yet?

Here's a great link to get you started if you want to try it:

Open Original Shared Link

Best wishes.....I do hope that you feel better soon!!

JoAnn

Nasalady..thank you so much for this post...I just got back negative bloodwork and I am tired to fighting with the medical community..

Went gluten free 5 days ago and already feel like a new woman....

Sister has disease

I believe my mother had it from childhood ...she died early and so did her sister my aunt..

I am staying gluten free...as I sit here with my gluten-free homemade blueberry muffin and java...I am thinking

this gluten-free lifestyle is really not that bad and I get to feel better too!

Zoobie...I went gluten free without a diagnosis...my blood work was negative too...I just decided to take my own health in my own hands...

I am a newbie, but all that I have read leads me to believe there is so much Dr.'s just don't know yet about diagnosiing this disease...I was not going to take any chances...

[twe0708]

My mother died from celiac complications at age 70 after 25 years of being misdiagnosed. She was told she had lupus, but in fact she had celiac. By the time they made the correct diagnosis, it was too late. She might never have been correctly diagnosed had it not been for the diagnosis of her granddaughter(my niece) at age 9 months. Subsequently my brother was diagnosed (in his 40s). Both are healthy and doing fine on gluten-free diets.

I have many of the celiac symptoms (particularly the chronic bloating/distention). I finally got my internist to test me, but I don't understand the results. My"TTG Antibody, IGA" is negative, but my "Gliadin Antibody (IGA)" has come back positive in 2 different tests, a year apart. My internist says this means I don't have it, but I am still worried.

Could someone please direct me towards a definitive test, if there is such a thing?

Thank you very much.

I am so sorry to hear about your mom. Do you mind me asking what her complications were or what you thought she died from? Did you think Lupus or did she have other symptoms? Thyroidism and Cancer runs in my family and as a child I had a problem with my Thyroid, but it corrected itself after being on medication for two years. My daughters have it now. Anyway, on my grandfathers side he has two sisters and one brother that have died of cancer. I wonder if Celiac played a role in this. One is still alive with little time to go but I wonder if she was tested what the results would be. My dad also died of diabetes. All of these disorders are listed under Celiac, am I right?

[nora-n]

duh. the antigliadin test was the old test for celiac, and now they got the new one, ttg, and say a positive old antigliadin test means nothing?

Well, even with those with total villous atrophy about 20% have negative tests, it is the other way around, positive tets mean something, negative tests do not mean you cannot have it....