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ARK

Enterolabs Gene Test? New Here, First Post!

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I am SO happy to have found this site - someone sent me the link to this site.

My 14 yr old son has a LOT of the symptoms of celiac disease, but we have not yet received the test results.

We sent off a test to ENTEROLABS - it was just the cheek swab for the gene test. It was all we could afford. But, now I am worried maybe we made a mistake, since I went to the website and read alot.

Could that test come back negative but he could still have celiac?? :huh:

We just started the gluten free diet - the whole family but I am constantly messing up! Like this morning - I let him cook his own hashbrown and didnt think to read the box until later. BAD!

My sister has celiac and who knows, maybe a lot of us do - we all have symptoms....

A SUPER NICE friend with deliac loaned me all her books and even brought over a TON of treats and mixes. What a blessing!!

Thanks,

ARK

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Welcome ARK!

The gene test will tell you whether he has celiac genes, gluten intolerant genes or both.

I would assume he has celiac genes (or one anyway) if it runs in the family. If he doesn't have the known celiac genes he could still be gluten sensitive (as enterolab states it). Sounds like he would benefit from gluten free as well as the rest of your family.

Please let us know when you get the results back.

Don't be too hard on yourself as far as the diet and learning. There is a long learning curve but it does get easier. He can learn right along side of you, he's going to have to do it on his own someday.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Don't be too hard on yourself as far as the diet and learning. There is a long learning curve but it does get easier. He can learn right along side of you, he's going to have to do it on his own someday.

THANKS so much for the welcome and the help!

I wrote down everything he ate today and the ONLY thing that might have been a problem today was the hashbrown. "Produced in a plant that produces wheat products" or something like that.

So, he was irritable after that, but not too bad for most of the day until 6pm when suddenly he started feeling AWFUL! Stomach ache, diarrhea, extreme fatigue, basically a 9 on a scale of 1 to 10. So, I started questioning him.... "I'm really trying to help you get well - if you snitched anything I need to know about it."

So, my honest son confessed that he snitched one bite of cinnamon bread (9am). Yeah, I'm a bad mom for even having it in the house!!

I wonder how long it is before the reactions hit most people? Seems like it took most of the day before he started feeling really bad. The two things he ate that were not gluten-free were at 9 am!

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Reaction times can vary from pretty quick to 1 day, maybe even 2.

He needs to be willing to do the diet and understand what he's doing by eating gluten. I would think that if he gets sick enough, often enough that he would be more willing to stay on the diet. I don't like to wish the discomfort of glutening on anyone but I do hope he will learn from this and choose to be healthy and pain free.

I know teens can be stubborn though, so don't be too hard on yourself. He needs to learn that he is responsible for what he puts in his mouth. Of my stepsons (15-24 years), some of them would have listened, some of them would not have.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Reaction times can vary from pretty quick to 1 day, maybe even 2.

He needs to be willing to do the diet and understand what he's doing by eating gluten. I would think that if he gets sick enough, often enough that he would be more willing to stay on the diet. I don't like to wish the discomfort of glutening on anyone but I do hope he will learn from this and choose to be healthy and pain free.

I know teens can be stubborn though, so don't be too hard on yourself. He needs to learn that he is responsible for what he puts in his mouth. Of my stepsons (15-24 years), some of them would have listened, some of them would not have.

You are SO right - maybe now he will really get the connection - gluten = pain and misery!!! I think he just hasnt really believed it yet because we dont have the test results back.

ALSO, the doctor has been throwing out several wild theories and he didnt have any of those possible problems so he may be thinking he doesnt have celiac either.

It has been a long couple of months here, trying to figure out why he is so sick! His blood sugar has been really low, severe vit B defiecienct, parasites, chemical poisoning, and heavy metal poisoning. We sent off a hair sample for analysis and he had a high level of arsenic!!!!!!!!!! :angry:

We still havent figured out why he has it and not the rest of us. (Well, none of the rest of us have been tested, but we all feel a lot better than he does!) We found out the arsenic is in our deck, and took care of that problem....

I'm just anxious for him to feel better! He is REALLY depressed. I sure do appreciate this board!! LOTS of good info! Thanks so much for replying to my questions.

ARK

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My reactions usually start a few hours after I get glutened... more or less the time scale you were wondering about.

Hopefully he'll make the connection about gluten= pain. If he's depressed about feeing sick, that should lift once he's on a gltuen free diet for a while. If he's depressed about not getting to eat gluten ever again, well, there's a grieving process to all of this and he has to be allowed to grieve for the change in his life.

I start feeling very depressed any time I accidentaly gluten myself, there seems to be some kind of a chemical reaction that happens as well.

Pauliina

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My reactions usually start a few hours after I get glutened... more or less the time scale you were wondering about.

Hopefully he'll make the connection about gluten= pain. If he's depressed about feeing sick, that should lift once he's on a gltuen free diet for a while. If he's depressed about not getting to eat gluten ever again, well, there's a grieving process to all of this and he has to be allowed to grieve for the change in his life.

I start feeling very depressed any time I accidentaly gluten myself, there seems to be some kind of a chemical reaction that happens as well.

Pauliina

Thanks Paulina! He's depressed about EVERYTHING, and the thought of a gluten free diet is depressing too. But, truthfully, he is very negative about almost everything. SO depressed. He's already gone back to bed for the day.... *sigh*

I definitely appreciate your input about allowing him to grieve! Thanks so much.

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Thanks Paulina! He's depressed about EVERYTHING, and the thought of a gluten free diet is depressing too. But, truthfully, he is very negative about almost everything. SO depressed. He's already gone back to bed for the day.... *sigh*

I definitely appreciate your input about allowing him to grieve! Thanks so much.

Ark,

There's a teenager section on this board- maybe he'd like to look at that? Teens are so mercurial anyway that possibly having celiac to add to that will probably cause some initial crazy mood swings. I work with a few teens who have celiac and they seem to have the swing of the diet and also a lot of support from their friends, although I know it took awhile. Maybe if he'd agree to read some of this board he's begin to realize it really isn't the end of life as he knows it! Although it is a typical teenage reaction to think that way. Best of luck to all of you.

lisa

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Ark,

There's a teenager section on this board- maybe he'd like to look at that? Teens are so mercurial anyway that possibly having celiac to add to that will probably cause some initial crazy mood swings. I work with a few teens who have celiac and they seem to have the swing of the diet and also a lot of support from their friends, although I know it took awhile. Maybe if he'd agree to read some of this board he's begin to realize it really isn't the end of life as he knows it! Although it is a typical teenage reaction to think that way. Best of luck to all of you.

lisa

\

Thanks Lisa! I asked him, and he said maybe he'd go check it out if his test comes back positive. ;)

He thinks he is going to rely solely on the test, whereas I plan to rely on results from the gluten free diet!! :D

We FINALLY made it through a couple days gluten free! And the 2 days before that were gluten lite because we had some small mishaps...

NOV 18 and NOV 19 are the first two days of his entire LIFE that he only ate 3 meals and nothing else.

I am in total shock! So is he - he said it feels SO weird not to be hungry all the time! I HOPE this is a good sign. I HOPE it means that he is healing. He thinks it is not a good sign because he still feels just as awful as far as stomach pain and fatigue....

What do yall think???

Thanks SO much!

Rachel

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Rachel,

Andrea is right when she says "Don't be too hard on yourself as far as the diet and learning. There is a long learning curve but it does get easier." Going gluten free is a huge life change and there is a lot to learn. But I just wanted to say : it is all definitely WORTH it !!! So don't lose hope!

Celiac's disease is terrible in the way that it is so stealthy and the damage done is so deep. And don't worry if he doesn't heal immediately - it takes a very long time for the system to overcome the trauma it's been through (life to date.) For now have patience and know you are not alone out there.

Christian


Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:

Antigliadin IgA 33 (Normal Range <10 Units)

Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)

Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:

Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

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NOV 18 and NOV 19 are the first two days of his entire LIFE that he only ate 3 meals and nothing else.

I am in total shock! So is he - he said it feels SO weird not to be hungry all the time! I HOPE this is a good sign. I HOPE it means that he is healing. He thinks it is not a good sign because he still feels just as awful as far as stomach pain and fatigue....

If I remember correctly I have read other posts before that have mentioned this same thing.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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