Celiac Vs Gluten Intolerance

[lilfrenchie]

Like many of you, i have been sick for many years. My dad was just diagnosed with celiac this past spring. he got really sick, was in the hospital, lost 25 lbs. I have had milder GI issues for past 9 years. Had many tests, no diagnosis.

When my dad was diagnosed, I went to have the blood test and biopsy, both which were negative. I didn't believe the results and went on a gluten free diet for 3 weeks with great results. I am trying my best to be gluten free at this time but it can be hard at times. My brother also believes he may have issues with gluten.

It seems the professional medical community is so subjective on this subject. Every MD i would ask or research that i do tells me something conflicting.

MY question is: how do i figure out if i am just gluten intolerant (and can eat gluten and do no future harm, just have bad symptoms) vs a celiac? Do I assume that since my dad has it, it is therefore genetic and likely celiac? Does gluten intolerance turn into celiac if non compliant?

Thanks for your help in advance! this forum has been priceless!

[Lisa]

Like many of you, i have been sick for many years. My dad was just diagnosed with celiac this past spring. he got really sick, was in the hospital, lost 25 lbs. I have had milder GI issues for past 9 years. Had many tests, no diagnosis.

When my dad was diagnosed, I went to have the blood test and biopsy, both which were negative. I didn't believe the results and went on a gluten free diet for 3 weeks with great results. I am trying my best to be gluten free at this time but it can be hard at times. My brother also believes he may have issues with gluten.

It seems the professional medical community is so subjective on this subject. Every MD i would ask or research that i do tells me something conflicting.

MY question is: how do i figure out if i am just gluten intolerant (and can eat gluten and do no future harm, just have bad symptoms) vs a celiac? Do I assume that since my dad has it, it is therefore genetic and likely celiac? Does gluten intolerance turn into celiac if non compliant?

Thanks for your help in advance! this forum has been priceless!

Welcome!

You have found a great site. The TENDENCY for Celiac to be passed on to first degree relatives is about 20%. The current available testing it not what we would like at this time. Although, there can be false negatives, but no false positives.

Some believe that a gluten intolerance is a precursor to Celiac Disease. It might be, but I have seen no studies to support that theory. As you know with Celiac Disease, there is an autoimmune response. With a gluten intolerance, sensitivity or allergy, there is not.

It might be wise, given your family history and symptoms, that you begin a complete gluten free diet. A positive dietary response is a diagnosis of either a gluten intolerance or Celiac Disease, as the RX is the same.

[mushroom]

Like many of you, i have been sick for many years. My dad was just diagnosed with celiac this past spring. he got really sick, was in the hospital, lost 25 lbs. I have had milder GI issues for past 9 years. Had many tests, no diagnosis.

When my dad was diagnosed, I went to have the blood test and biopsy, both which were negative. I didn't believe the results and went on a gluten free diet for 3 weeks with great results. I am trying my best to be gluten free at this time but it can be hard at times. My brother also believes he may have issues with gluten.

It seems the professional medical community is so subjective on this subject. Every MD i would ask or research that i do tells me something conflicting.

MY question is: how do i figure out if i am just gluten intolerant (and can eat gluten and do no future harm, just have bad symptoms) vs a celiac? Do I assume that since my dad has it, it is therefore genetic and likely celiac? Does gluten intolerance turn into celiac if non compliant?

Thanks for your help in advance! this forum has been priceless!

You will probably have noticed if you have been reading on this forum that the biggest problem most of us face is getting a diagnosis. So many of us have self-diagnosed because no one even thought to test us. On the other hand, there are many false negatives on the blood test and many grades of intestinal damage before a biopsy is read as positive. I personally would not risk waiting for a positive biopsy to convince myself that I should not eat gluten.

I do not care if I am gluten intolerant or celiac, although since I have two other auto immune diseases (psoriasis and RA) I am pretty sure I am celiac. There is such a strong genetic component to this disease (I have a non-gluten-eating sister who is undiagnosed and who has a diagnosed daughter. I also have other family members with celiac-type issues.

One possible way would be to go for the genetic testing, but then again they sometimes don't seem to test for all possible genes and they are finding more all the time, so you can end up with a false negative there too.

It truly is a conundrum and we all have to make personal decisions based on our best knowledge. The diet is not easy, although it becomes less difficult with experience, but living with the other diseases is not easy either, and I have to do both.

If the diet seems to be working for you then I think you probably have the best test result unless you want to risk the further damage.

Welcome to the forum, and good luck in making your decisions.

Neroli

P.S. Cross-posted with Momma Goose.