Our story: non-celiac gluten intolerance/celiac and the genetic connection

Angel - posted on 12/04/2008 ( 12 moms have responded )

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Hi! I am new here. I have 4 kids and we are all gluten intolerant, though I have one child that is a traditional celiac.

We were dx through a lab online called Enterolab. I HIGHLY recommend it! I tested myself first. They also did genetic testing on me and found that I have one celiac gene and one non-celiac gluten sensitivity gene. I also had antibodies to gluten in my stool. When I went in to the dr. however I did NOT have a positive blood test which led to the dx of non-celiac gluten intolerant. My dr. was very interested having not heard of Enterolab, but deeming them reliable after looking into it.

Since I had 2 genes I had all 4 kids tested for gluten antibodies in their stool and they ALL had it! Most of my kids seemed totally fine, big, healthy, etc. I was totally surprised. But now that they have been GF for almost a year, if they eat something with a little gluten they feel very sick!

My Celiac child hugged me for the first time after being GF for 2 weeks. He had just turned 6. It turns out he also has an actual allergy to wheat that affects his brain. Food can be so weird!!

After finding this out about my family I encouraged my parents and siblings to get tested as I know I had to get a copy of each gene of mine from each parent. It turned out that my dad had a celiac gene and a non-celiac gluten intolerance gene and very high antibodies and a terrible, terrible test score indicating bad inflammation. His dr. had been trying to tell him for years that his vast intestinal issues were nothing! Yeah right!

My mom had 2 non-celiac gluten intolerance genes and also antibodies and intestinal malabsorbtion. She has had no intestinal issues whatsoever, but many other issues like fibromyalgia, sleep issues, depression, etc.

My sister also had one of each gene and antibodies to gluten. She has had juvenile rheumatoid arthritis and seems to be feeling better since going GF.

My brother also had 2 non-celiac GI genes and antibodies to gluten and had seemed to be a healthy young man but feels even healthier being GF.

SO gluten can be causing damage and you can have no symptoms whatsoever. ick!

Most of us also tested positive for dairy antibodies in our stool through Enterolab.

I would HIGHLY suggest that you guys consider getting the rest of your family tested through Enterolab. A negative blood test doesn't necessarily mean that gluten isn't causing trouble, just that it likely isn't traditional celiac. But this does obviously run in familes. I am so glad we got all our kids tested. :)

I look forward to getting to know you all!!

:)Angel

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Belinda - posted on 04/22/2009

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WOW.

I live in Australia and have been told i have Ceoliac from a blood test and so have 2 of my three children. My mother, sister and brother have been told that they are gluten sensitive. My non GF son was on a GF diet but at the age of 11 has decided to try a normal diet with some very mixed results and i'm looking for a better test that will show us more of what is going on with him. He has skin irritations and bloating but without test results doesn't believe anything is wrong. He does't eat alot of gluten as he eats what i prepare for the other kids but still reacts. Thank you for the information on this new test. I will be talking to my allergy specilist about it.

JoAnna - posted on 02/24/2009

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Thank you for sharing!! There are so manny people who do not understand the whole anti-body thing let alone food allergies in general. My son and I have gluten Intolerances due to Mercury posianing!!! I have been sick since I was born (long story wont subject you too it, most people dont understand anyway(. so I will just say after, Lupus, Fibromyaligia, Depression, Nerological problems, Chronic Fatiqe, enviroment allergies and down to eating just turkey broth my body wasnt even making enzeams on its own either!, I finnaly know what is wrong in 2006 I finnaly knew what was wrong with me and know what to do! Long journey to get better but we will get there!

I am a professional chef and I have enjoyed making family favorites as well as new and fun food, gluten-free, sugar free, dairy free and most of the time Nut Free as well!!

Thanks for sharing sorry I wrote a book,, not my intention.

Keeley - posted on 02/22/2009

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Quoting Erin:

This is exactly what I logged on to ask. We had internet diagnoised our daughter, but her on the diet and then had her tested. The test was negative which I know can be becasue of the diet. But we have never really worried about cross contamination so it is possible that she still has trace amount of gluten in her body. Her symtoms were always mild and mostly behavioral. The Dr suggested we gradually try her off the diet and see if the symptoms return. I think he would feel very differently if he had lived with her before she was GF! We did the blood test. Would check the stool, matter if she were already GF? Genetic testing sounds expensive and could be complicated in our stituation???



Hi, I am really interested to know what behavioural probs you found.  My son turns into a nightmare child after gluten, then usually the fifth day after eating (first two days after there is no major reaction, the next two to three days he feels awful) he switches back to being the normal loving happy child I know. 



I thought it was just because he felt ill that he behaved so badly - arguing with anyone and everyone, being rude, being downright naughty.  I would be really interested to know how your kids react too.



Thanks, keeley

Andra - posted on 02/19/2009

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My second daughter had a horrid reaction to the DaPT vaccine, then became classic celiac. Everyone was healthy until then. It took us years to find out what was wrong with her because the one shot that she had, she got when she was four. (We don't vax because of too many reactions in the family causing brain damage and (or) seizures.) Seven and a-half years later, we found out through a friend who had seen a documentary on this disease what could possibly be wrong. The doctor REFUSED to diagnose celiac's because the "diet is too strict"! We took her off gluten ourselves and have never looked back! She is up, around, happy and smart! Who needs gluten?

Tina - posted on 02/08/2009

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Hello after reading your post I wonder about man of my five children. All are lactose intolerant with one being milk allergy and one that is sensitive to gluten/cassein but tested negative all of us by blood to the test. Where is Enterolab. My email address is TandRMagnanti@aol.com. I look forward to your thoughts. My father and brother seem sensitive to dairy products with increased gas problems. Myself at 32 became having issues with I think grease and also stuffy nose when I consume cheese but thought it was from over consumption. Tina Magnanti

Christine - posted on 02/04/2009

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Hi everyone.



I'm new here and just read a lot of the posts.  I have not had my daughter tested but have seen the evidence for myself that the gluten free diet works.  I used to cry all the time because I could not make my child happy.  She would flip out over every little thing that didn't go exactly right and I didn't understand why I couldn't correct her behavior.  She is my third child and I had not experienced this with the other so it made no sense.  Until I heard about Celiac and discovered that many of the symptoms in children are behavioral.  Within 3 days of putting her on a gluten free diet, she was a different child.  It was like a miracle!  Some family members have asked if I've had her tested, but I'm not sure I want to.  I don't want a doctor to tell me that nothing is wrong with her and I'm just another crazy mother who doesn't know what I'm talking about.  The proof is in my daughter's smile.  She's been gluten free for 1 year now and on occasion I've allowed her to eat something small with gluten in it.  She ends up with a tummy ache and often will have a meltdown.  That's enough for me.  I don't need an official diagnosis.  Even members of my extended family have commented on the difference they can see in her.  I feel like shouting from the rooftops to tell other moms about this because most doctors don't even offer the gluten free diet as an option, unless their test reveals true Celiac.  How many of us out there are simply gluten intolerant or gluten sensitive?  You don't really know for sure until you remove it from your diet and see how you feel.  It's made all the difference for us.



Thanks for letting me share my story, and I look forward to hearing more from all of you.



Christine

Krissy - posted on 01/13/2009

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Hi Erin



The GI docs also told us to get her off her GF diet and test her which we did (and we paid for it) and her tests came back negative. She was a total nightmare. We put her back on it and what a different child. She eats, sleeps, goes to the bathroom and has her coloring back. I am glad to say she has also gained 7lbs and grew 3 inches since being on the diet. We are supposed to go back and have another scope done in July but Im not doing it. I dont need a piece of paper to tell me my daughter has a gluten intolerance when clearly she does adn the diet works. I went through numerous tests myself for years and finally feel great and have my life back. I cant imagine taking that from her now when she knows what the diet is all about and is actually afraid to eat anything with wheat. Even my 2 1/2 year old asks if certain foods have wheat in them.  The genetic testing is expensive and most GI's wont use entrolab for some reason. I requested it and he told me no a scope is the best way to detect celiac which is old school and not true since I had 2 both negative and I am a true celiac.  These dr's dont live everyday with our children and see how they are on the diet and off the diet, I agree with you they would feel different if they were in our shoes.



Take Care



 

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Angel, were your family's test expensive? I'd be interested in doing this testing for my son, I hate the idea of a biopsy for him (mine was no fun) and forget about a gluten challenge.

Stephanie in Colorado

Nancy - posted on 12/12/2008

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Margaret,

I would definitly have all family members tested. After my daughter was diagnosed, we got the family blood tested and all came back negative. We ahve not done the genetic testing on our other 2 kids, but are thinking about it. It would be great to rule out the gene and never have to worry about it again. My 9 year old daughter was diagnosed when she was 2 1/2. We were diagnosed by a GI doc by endoscopy. Since then, she has had the bone scan done (at Childrens) and every year we get a Ttg, CBC, and aChem 7. So far, so good. We actually have not been back to the GI doc (although we love ours) b/c our regular Pediatrician orders the blood work. That's great how your daughter has responded to the diet. As far a knowing enough....I feel like I am always looking for new info. The support group at CHOP is a wonderful resource and I'm sure there are plenty in every area. Good luck with whatever you decide.

Margaret - posted on 12/10/2008

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Wow I can't believe all this info. My daughter is 12 and has GF for 3 years now. There is alot of Celiacs in my family (materal) my Grandmother, Aunts, Cousins, and now my sister was just diagnosed and I have never had genetic testing. With my daughter she had such terrible diarhea that she basically stopped eating because she knew once she ate she would be sick. I took her to the Pedi and asked for some blood work and it came back that she tested positive for the antibody and sent me to a GI who performed an Endoscopy which confirmed Celiac. That was it ...no genetic testing or any other test for that matter. How often are your children seen by their GI Dr? We took her to Childrens and they were very casual about the whole thing. She is doing really well and is gaining weight which is great because she was so thin. I feel like after reading your post that I should know more. Should I have my other 2 children checked? Should my husband and I have testing done? Any suggestions would be greatly appreciated.

Cheers,

Margaret

Becca - posted on 12/08/2008

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Thank you for your informational post! My son has been on a GF DF diet for 9 months now. We still don't know why he can't have it. He tested negative for Cystic Fibrosis and genetic Celiacs. But if my child eats a leg off an animal cracker, he is sick with stomach ache & diarrhea for 24 hours. I am desperately seeking a diagnoses because he still is not growing in height. (He is almost 3 and looks like he is 1.5yr). Was it your general practitioner that did these tests or your GI doc? And how much did the testing cost?

Erin - posted on 12/06/2008

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This is exactly what I logged on to ask. We had internet diagnoised our daughter, but her on the diet and then had her tested. The test was negative which I know can be becasue of the diet. But we have never really worried about cross contamination so it is possible that she still has trace amount of gluten in her body. Her symtoms were always mild and mostly behavioral. The Dr suggested we gradually try her off the diet and see if the symptoms return. I think he would feel very differently if he had lived with her before she was GF! We did the blood test. Would check the stool, matter if she were already GF? Genetic testing sounds expensive and could be complicated in our stituation???

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