Fecal test and gene test?

Gina · Joined: 29 Mar 2005 Posts: 9

Hi, It has been a while since I wrote....Have had my three children on a gluten free diet for the past few months. My oldest son had several indications that he had Celiac Disease. Blood work came back with mixed results but Grandma has Celiac and insisted we get on the diet. So we went on the diet. My husband has not supported me at all. Everytime I leave the kids with him he lets them cheat on their diet. The kids have been getting so many mixed messages. Poor babies, they are 5yrs, 7yrs.and 9yrs. Well, four weeks ago Grandma broke down and purchased Dr. Fine's Poop test and gene test for my oldest son. Nobody will support us so we were looking for confirmation. As it turns out my son Drew has the DQ1 gene. He has it because his dad and myself both have the gene and have passed it down to him. Not only to him, but to all of our children. Thus proving correct Grandmothers theory. Drew's poop test was a 25 meaning that he has a gluten sensitivity. They are not saying he has Celiac only Gluten Sensitivity. Am I to understand that gluten sensitvity is what will lead to Celiac Disease down the road? I have read a lot from Dr. Fines website and Gluten Sensitivity does not sound much better than CD, no matter what it sound like we all need to be on a gluten free diet. Am I really understanding this correctly? Help!!

aklap · Joined: 02 Oct 2004 Posts: 8796 Location: WI, USA

Hi Gina,

It's great to hear from you!

There is no definitive answer yet if GS will develope into CD - the research is going on.

Have you seen this? It's a handout from the Gluten Intolerance Group about Gluten Sensitivity vs CD. It explains things very nicely.

http://www.gluten.net/downloads/infopackets/Gluten%20Intol%20not%20CD.pdf

Testing from enterolabs is proof enough for many to go and stay GF. You may not ever get an "offical" CD diagnosis unless there are biopsies taken. Damaged villi is the true definition of CD.

Do you see a difference in Drew? Its probably hard to tell with Dad letting him cheat Evil or Very Mad

If it were me...with results like that...I'd be GF
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Nikster57 · Guest

Sometimes parents can be in denial. I'm sorry you are not getting the support you need. I think I would give him some information to read and give him facts. He doesn't want to think anything is wrong with his family. I hope you can get some kind of support from all of us.......Nikki

skbird · Joined: 13 Jan 2005 Posts: 245 Location: California

Celiac disease is not the top of the pyramid when it comes to gluten intolerance. It is just one manifestation of it, and it is the main one people know about.

I have DQ1 gene (subtype 6) and also DQ3 gene (subtype9) and they are both indicated in gluten sensitivity. DQ1 is also associated with microscopic colitis as well as neurological presentations of gluten intolerance, like mood, migraine, gluten ataxia, etc. It is a very good idea to stick to a gluten free diet, especially if there are noticable, physical changes when your son is on it. Additionally, the antibodies are enough to prove your case.

I'm sorry your husband is not being that supportive. This seems to be more common that I would have thought. I can tell you that while I am not sure I will ever be diagnosed with actual Celiac, I do have IBS reactions to gluten (I recently took Tums, two doses, and am suffering for this as there is gluten in Tums). I also tend to get very emotional, start crying, get depressed as well. It's a rough few days, up to a couple of weeks for me after I get a little gluten in my system.

Anyway, you are right to work at getting your children gluten free. Keep reading here and hopefully your husband will become more supportive.
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Stephanie

Guest · Posted: Thu Jul 21, 2005 3:24 pm Post subject: Thank you

Thank you all for answering my message. I appreciate the support!