Once You Are Gluten Free What Are The Testing Options?

[carecare]

My dh went gluten free 2 yrs ago for a couple months with great success but decided to eat as before after that period of time and yes, his symptoms came back. Well, he did a paleo eating challenge with his workout group and realized his symptoms did indeed clear up again. He knows now he can't have gluten. Thanksgiving he cheated and he had issues for a good two weeks....off and on diarrhea. His severe indigestion started Thanksgiving evening...but luckily that didn't last 2 wks...it's just the D that's been off and on...and some stomach pain.

Anyway, my question is....once you are already gluten free is there any surefire way of testing for Celiac? I know the bloodwork won't be accurate...however, would a biopsy show celiac if you've been off of gluten for a few months? I know Entrolabs (sp?) does testing...and you don't have to be ingesting gluten to get tested right? but they can't say you have celiac but only gluten intolerance. Well we already know he's gluten intolerance. If I did not have children I'd say fine...live with not having the official diagnosis and just live a gluten free life. I just would like to know for sure. Also, because we aren't a gluten free household I want to make sure we are doing everything right for my husband. If he's true Celiac it would be easier to tell the kids "daddy has Celiac and we need to make our home gluten free."...it would just be easier for everyone if we knew. If he's Celiac I don't want him getting accidentally glutened because we made cookies with flour or baked something with gluten in it and didn't clean things good enough.

So should I encourage him to make an appointment with the dr. and request a biopsy?

Also, anyone know what the dr. meant by this when my daughter had her appendix out 4-5 yrs ago. He said there was fluid around her appendix that is usually present with celiac patients. The fluid had certain type of lymphocytic cells or something in it. She did get the bloodtest for celiac and was negative ( I also remember telling the dr that my daughter hadn't had much gluten rich foods in a few weeks...as she doesn't eat bread so her gluten intake was mostly from some cereal here and there...he thought that would be fine)....but I never seen the numbers and then her pediatrician the last time I saw her (a month ago) was looking through her chart and mentioned something about the numbers on the celiac test but then didn't say anything else. I wondered if it was borderline or something. Should I call up and ask for the results? And the reason I actually got her tested was because for years prior she had so many bouts of illness and diarrhea. However, that has seemed to calm down and she rarely has the cramping and stuff anymore. So I don't know what to think.

Any ideas?

CC

edited to add: I did a lot of reading here in the last hour. I think I'm going to encourage a Entrolab full screening. He hates dr's and this way we'll know just a little more and have a clue about what's going on.

[JillianLindsay]

Hello,

Enterolab & other genetic testing can only tell you if someone has a genetic predisposition to celiac disease, it is not a confirmation that they do indeed have it. DRs may dx (diagnose) based on genetic testing plus a positive dietary response.

Lymphocytes (I'm not a Dr, so this is my lay person's understanding) are a type of white blood cell which show an immunte system response. My biopsy showed a lymphocyte overgrowth and this paired with a positive ttg blood test and genetic test confirmed my dx.

I hope that helps at least a little

Good luck,

Jillian

My dh went gluten free 2 yrs ago for a couple months with great success but decided to eat as before after that period of time and yes, his symptoms came back. Well, he did a paleo eating challenge with his workout group and realized his symptoms did indeed clear up again. He knows now he can't have gluten. Thanksgiving he cheated and he had issues for a good two weeks....off and on diarrhea. His severe indigestion started Thanksgiving evening...but luckily that didn't last 2 wks...it's just the D that's been off and on...and some stomach pain.

Anyway, my question is....once you are already gluten free is there any surefire way of testing for Celiac? I know the bloodwork won't be accurate...however, would a biopsy show celiac if you've been off of gluten for a few months? I know Entrolabs (sp?) does testing...and you don't have to be ingesting gluten to get tested right? but they can't say you have celiac but only gluten intolerance. Well we already know he's gluten intolerance. If I did not have children I'd say fine...live with not having the official diagnosis and just live a gluten free life. I just would like to know for sure. Also, because we aren't a gluten free household I want to make sure we are doing everything right for my husband. If he's true Celiac it would be easier to tell the kids "daddy has Celiac and we need to make our home gluten free."...it would just be easier for everyone if we knew. If he's Celiac I don't want him getting accidentally glutened because we made cookies with flour or baked something with gluten in it and didn't clean things good enough.

So should I encourage him to make an appointment with the dr. and request a biopsy?

Also, anyone know what the dr. meant by this when my daughter had her appendix out 4-5 yrs ago. He said there was fluid around her appendix that is usually present with celiac patients. The fluid had certain type of lymphocytic cells or something in it. She did get the bloodtest for celiac and was negative ( I also remember telling the dr that my daughter hadn't had much gluten rich foods in a few weeks...as she doesn't eat bread so her gluten intake was mostly from some cereal here and there...he thought that would be fine)....but I never seen the numbers and then her pediatrician the last time I saw her (a month ago) was looking through her chart and mentioned something about the numbers on the celiac test but then didn't say anything else. I wondered if it was borderline or something. Should I call up and ask for the results? And the reason I actually got her tested was because for years prior she had so many bouts of illness and diarrhea. However, that has seemed to calm down and she rarely has the cramping and stuff anymore. So I don't know what to think.

Any ideas?

CC

edited to add: I did a lot of reading here in the last hour. I think I'm going to encourage a Entrolab full screening. He hates dr's and this way we'll know just a little more and have a clue about what's going on.

[brigala]

No, there's no surefire way to diagnose Celiac or know the difference between Celiac and some other gluten intolerance unless you're eating gluten consistently for a period of time. Tests MAY come back positive for Celiac, but negative results will be questionable.

Frankly, negative results are questionable enough even on a full-gluten diet.

But it doesn't really matter, does it? Whether your husband is gluten intolerant or Celiac, the treatment is the same. And although the genetic test by Enterolab can't diagnose Celiac, per se, it CAN identify the genetic disposition toward Celiac. And for the purposes of where to go from here with your daughter, the genetic disposition is all that matters. It doesn't matter if your husband has Celiac or not if he has the gene -- your daughter still could have inherited it.

If I were in your shoes, I would have the husband take just the genetic test from Enterolab, and have your daughter take the genetic AND the stool test from Enterolab. That way you'll know what you're dealing with.

My son had the Enterolab stuff done and it shows he doesn't have the Celiac gene but he has two copies of a gene associated with gluten intolerance and he has elevated antibodies to gluten (and to dairy). So he probably does NOT have Celiac disease, but he definitely has a gluten problem (which we already knew, symptomatically).

[carecare]

Thanks for the responses. I was thinking that same thing. Just having my husband get the genetic testing and my daughter get the full screening. She's really balking at having the household go gluten free and if it comes back showing a gluten intolerance it would give her more evidence that it's for the best. We know for a fact the my husband is intolerant to gluten and he's not willing to go back on gluten for testing. So I'm more concerned about making sure my kids are doing the right thing for their health now. I'm also thinking of getting the full screening done for myself as I've been diagnosed with IBS which flared cooincidentally when I started cooking gluten free for my husband two years ago....it was problems once every two weeks...then gradually became 2-3 times a week 9 months later for which I went to the dr. He had me take fiber supplements everyday and said if it doesn't clear in 2 wks on the fiber he's send me to a gastro doctor. Fiber cleared it right up...but I'm not good with taking the fiber every day and tend to have relapses because of it. I wonder though, if I'm having some intolerance issues to foods. I also have several siblings with IBS (never tested for gluten intoelance)...and siblings and mother with autoimmune disorders...and a father who died of Colon cancer.

Anyway, thanks for all the help

CC

No, there's no surefire way to diagnose Celiac or know the difference between Celiac and some other gluten intolerance unless you're eating gluten consistently for a period of time. Tests MAY come back positive for Celiac, but negative results will be questionable.

Frankly, negative results are questionable enough even on a full-gluten diet.

But it doesn't really matter, does it? Whether your husband is gluten intolerant or Celiac, the treatment is the same. And although the genetic test by Enterolab can't diagnose Celiac, per se, it CAN identify the genetic disposition toward Celiac. And for the purposes of where to go from here with your daughter, the genetic disposition is all that matters. It doesn't matter if your husband has Celiac or not if he has the gene -- your daughter still could have inherited it.

If I were in your shoes, I would have the husband take just the genetic test from Enterolab, and have your daughter take the genetic AND the stool test from Enterolab. That way you'll know what you're dealing with.

My son had the Enterolab stuff done and it shows he doesn't have the Celiac gene but he has two copies of a gene associated with gluten intolerance and he has elevated antibodies to gluten (and to dairy). So he probably does NOT have Celiac disease, but he definitely has a gluten problem (which we already knew, symptomatically).