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Mama Ruthies

Enterolab Testing Or Try Gluten Free & See Changes?

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We had our 3.5 year old son tested thru Enterolab and he is off gluten. We had our other four kids and my husband and myself genetic tested thru Enterolab---I have one celiac gene and one gluten sensitivity and have been gluten free since December. My husband has two gluten sensitivity genes, and our other four kids have two DQ1 genes.

I'm trying to figure out what would be the best approach to see if the rest of the family is affected by gluten. If we removed gluten for two months and reintroduced it, would whoever has issues likely show symptoms of some kind? Or is it best to run the gluten sensitivity test thru Enterolab to see who is reacting to the gluten without a doubt. I am trying to watch our money, but also don't want to have our kids or us have medical issues in the future that we could have prevented by getting off gluten sooner.

What would you do?

Thanks for any advice!

Amy

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I'm kinda struggling with similar questions. I took an AL.C.A.T test (if u leave out the dots, the text gets changed, long storY) which showed tons of food sensitivities for me, and I took the gluten panel which was negative, but i'd already been gluten free for 6 weeks. I'm wondering if I should get the gene test or not, but I want to get some testing on my middle child because he's got big issues and I want to know where to start - and its easier to commit with something in writing.

I think its just a choice - the gluten challenge is what most people call the 'gold standard' - seeing what happens when you go on the diet and come off the diet. Having the test might get more buy-in from family


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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One of my concerns is that after two months, if gluten is a problem, would it definitely be evident? The only difference I have noted being gluten free is that I don't have the bloated feeling I would sometimes get after dinner, although I did lose almost ten pounds so my pants have extra room---maybe that's why I don't feel as bloated! I haven't tried anything with gluten in it yet to see how I feel--if I notice a difference. But with so many people (60%) not having digestive symptoms, would we know for sure if the gluten is bothering us??

It's so hard to decide if and how to spend money. We've spent a lot (all out of pocket) on our 3.5 year old. I'm so on the fence----with the Enterolab testing we would know for sure, even if one of us is gluten intolerant.

Amy

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Are you talking about other untested family members, or about your other kids, yourself, and your husband? If you're talking about the latter, I would just go with the info Enterolab gave you and take everybody off glutens. They all have genes that show they will likely have a problem with glutens.

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The gene testing is actually not as valuable as the gluten sensitivity testing, IMO. We had the full panel done on 5 out of 6 of our immediate family members because I wanted to know for sure. This is not an easy lifestyle change to make and I was not sure I could keep it up for myself when I wasn't certain I had a problem with gluten. It turns out that the three youngest kids and I all have gluten issues. Hubby does not. So we are all gluten-free at home and hubby eats gluten out. I don't have intestinal symptoms. Mine are neurological. It was a valuable use of money, IMO, to get the firm results. Seeing it in black and white makes it very real. Also, my youngest daughter shows severe malabsorption and I have moderate malabsorption so it is good to know this so we could start on the road to healing. Hope that helps.

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Thank you so much for the responses! Texasmama, my concern with just removing the gluten without the test is that none of us have digestive issues---and would I catch changes in neurological ones? I think we will go ahead with the testing through Enterolab.

Thanks again!

Amy

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I'm not sure if this will help you or not, but here's my story with EnteroLab and where my family is now:

I have a family history of Celiac with the symptoms more on the neurological side vs. the digestive side. I went gluten free prior to meeting my husband and did SO GOOD on the diet. Well fast forward a few years and along with having a new family, the stress and day to day schedules that were beyond busy I fell back into eating gluten and began having a few symptoms that were definitely gluten related. I noticed my three year old daughter seemed to have an issue with gluten, as well as my husband. We all decided to get tested through Enterolab. Our results were surprising.

Both my husband and daughter scored high as being sensitive to gluten. I was below the cutoff, meaning I didn't show I was sensitive to gluten, and I'm the only one in the family that was having OBVIOUS problems with it. Apparently I have an antibody issue to where my sensitivity doesn't show up...

Long story short I became frustrated, went back on gluten and did great on it for a few months. Now I'm suffering from that. I have extreme body pain, and possibly have rheumatoid arthritis as well. I can barely move on some days. I recently went gluten free again and am starting to feel a lot better. The pain is not as bad as it was, and hopefully in time my body will start repairing itself.

I'm only telling you this because I thought Enterolab was my answer. I could prove to everyone and myself that it wasn't in my head, even though I knew from the diet that was my answer to all my health problems. Even the simple ones like dry skin, cold sores, and headaches. When my results came in I questioned what I knew in my heart and am paying for it now, almost a year later. I have two small children and I feel like I am the worst mom in the world because every day is a struggle now.

If you feel you and your family would do better on a gluten free diet you should try it. I have no problems with Enterolab, and think they do a great service. However there are people out there that do NOT get a positive reaction for gluten and who do better on a gluten free diet. I hope this helped a little. Even if you decide not to go gluten free, maybe in the future if you do have more health problems/symptoms you can then try the diet.

Just keep in mind that Enterolab doesn't always get it right. :)

Good luck!

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Lets see I think the original poster said that she already had the test done thru Enterolab.

to the orginal poster, re the double DQ1 genes, please keep those kids with double DQ1 totally gluten free & do not try messing around with giving them gluten. I say this because I am VERY familiar with the double DQ1 genes as I have double DQ1 as does most of my family. My mother died of colon cancer. My double DQ1 granddaughter 9 YO who is not gluten-free just recently got "chunky" and lost all the enamel off all of her teeth. She also has asthma type condition, had walking pneumonia twice last year, has hives & itchy hives all the time, has constipation. My son refuses to let them be gluten free - my double DQ1 37 year old son who I had to go to the health store to buy rice crakers for him when he was 1 YO. Despite the doctor that told me that no way could eating a soda cracker cause diarrhea. Thatnk goodness he told me that because I thought, okay I am looking at this kid standing there eating a soda cracker & the poop starts running down his leg, am I going to believe what I am seeing or the doc? From then on I did not trust doctors, which saved my life more than once.

My son, who is addicted to gluten, now has health issues & "idiopathic" liver damage. A double DQ1 friend of mine has osteoporosis & a rare auto immune illness, & other lifelong health issues, & tested positive for celiac thru biopsy. The reason we know what genes she has is she also tested thru enterolab. & was positive for dairy also. All the double DQ1 people that I know cannot tolerate dairy, including my double DQ1 sister that tested positive via blood test & had a great response from the diet. But got off of it for various little reasons and now she has rhematoid arthritis...

My son's first child, double DQ1, 12 YO is very small, I guess you cannot say he has failure to thrive anymore but that is what they said for the first years of his life, he came out of the womb with failure to thrive. The kid stayed sick with the usual breathing problems, ear infections etc. & his little brother although normal size, has terrible problems with cavities etc. & does have some health issues & constipation.

& in my family & all the people that I know with double DQ1 if you are eating gluten you have depression, period. My dil, who we know has at least one DQ1 is dyslexic & takes an antidepressant. she has never been tested.

There is not any research about the double DQ1, but from my personal experience & from what I read on the celiac forums it is not good to have double DQ1. They are now doing some research on the problems of double DQ2, there is an article posted about that on this site.

also, please give your kids B12...

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Thanks for your responses! We do have health insurance and could have the blood tests run on the older kids---wouldn't do it on our almost 2 year old. One concern I have with that route is if we get a celiac diagnosis, I don't want the kids to have problems getting insurance (my dad had this issue related to heart problems). Plus even with insurance, with allergy testing we had done, we paid more out of pocket per child than the Enterolab test costs.

gfpaperdoll, thanks so much for the info on the double DQ1----I had read somewhere that is the dreaded combination! Here I thought the DQ1 kids were "better off" than our son with DQ8 and DQ7. I will definitely have my husband read the info on this thread---I want him to be on board that this needs to be a family affair.

Our dentist recently told me that our almost 13 year old daughter has some enamel degenerization----hmmm, I bet from gluten. How thankful I am that we know about the problems with gluten now and can eliminate it!! I wish more doctors and even dentists were familiar with symptoms.

Thanks again everyone!

Amy

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Just wanted to add - I had my older son blood tested through the "traditional" labs at the hospital - he was negative for celiac disease. Testing through Enterolab showed he has gluten sensitivity and has two genes for that, but none for celiac.

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