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biggerbrother

Help A Canadian With Celiac! :)

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Hello all,

I am not celiac, but my girlfriend most probably (hopefully) is. She is 24, and in the last 3-4 years her health went really bad. Depression, constant (every moment for a few years now) nausea and headaches, bloating, abdominal pain, zero energy, no appetite, anxiousness, teeth sensitivity, etc. She is simply going crazy with all this, and I am starting to as well...

She has seen many doctors for these symptoms and NONE of them tested her for celiac. Most doctors don't believe her because all blood tests come back negative (dumb doctors don't give the right tests i suppose), and one even told her it was psycho-somatic (great way to get rid of a patien, right?).

Last month, she did a barium test (drinking a white liquid while they take xrays of your intestines) and the physician told her she might have celiac (how he supposed that I don't know). She then came back to see her family doctor, did the special blood test for celiac, and it came back negative. You can imagine the disapointment...

I then looked through this forum, still convinced it's celiac (because I want/need it to be celiac), and I ran across the Enterolab tests... Should she go with the full-on tests (369$) or just do some? Does anybody have any experience with Enterolab? Are the tests reliable? Should she do more tests since it's possible that it's not even celiac, but something else? Can these symptoms be caused by something else too?

I would be very greatful if someone could answer some of my questions, especially about Enterolab.

Oh, another question: I am from Montreal, Canada, and i was wondering if there are any special clinics here, or is it possible to do the same kinds of tests in Montreal.

Thank you so much in advance!!!

I just really want my girlfriend to come back to the amazing and full of life person she was before...

Jan (pronounced Yan)

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Hi, I'm sorry your girlfriend is so ill. I think it is great that you are trying to help her.

I can't help you with the information about testing but I am wondering if she has tried a gluten free diet, it is considered a diagnostic tool, also has she ever tried going dairy free?


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Welcome Jan! :D

I had my family tested through Enterolab. I would do the whole panel since they test for genes and they had been including dairy in with that. You would have to pay the overnight shipping charges since it's from outside the States.

I would encourage the Enterolab testing and cut out gluten. If she's up to it, it would be best to eliminate dairy for about 6 months to give her some time to start healing. Same goes for soy.

If she is not improving, say 6 months down the road then she would need to continue looking. If Enterolab comes back negative then she would need to continue looking. Some people that have had a lot of damage to their intestines take up to 2 years to feel better.

You need to watch out for gluten in personal care products, scratched non-stick pans, collander, toaster (she would need her own, a new one).


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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I know how she is feeling. I was so sick everyday of my twenties. Both my blood tests came back negative, which by the way is very common even if you have celiac. However, I was sick of being sick, so I tried the gluten-free diet and I haven't looked back. It changed my life. I had many of the same symptoms as you describe. It is defifnitely worth a try to change her diet. My doctor saw me three months into my gluten-free diet and she was so impressed with my positive health changes she did not want me to eat gluten again even to do the endoscopy. She said it wouldn't be worth it to get sick again just for a test that may come back negative anyways.

I don't know much about Enterolab, but you can be gluten-free and still have the tests done. So why not give the gluten-free diet a try, it won't hurt her, but it may help her.


Tapioca intolerant

First cousin dx'd with Celiac Disease

Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.

Gluten-free since June 2005

Dx with IBS February 2005

Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

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thank you for your quick responses and encouragement!!! you people are great.

i have another question though.

is it possible that the constant inflammation caused by the celiac disease is preventing healing processes in the body? i explain. my girlfriend had a motorcycle accident about 10 months ago, badly spraining her ankle. It still hurts her incredibly today, but all doctors (again those damn doctors) are saying she should be feeling fine by now, and that there is nothing to do... My question is: Is it possible that the celiac is preventing the torn ligaments to repair themselves (or stop hurting at least)?

Another question: How does a person become celiac? I know it's in one's genes, but is there something that triggers it?

Another one: So my girlfriend started the gluten-free diet a few days ago... how long does it usually take before she sees improvement? should she stop eating milk and soy just in case she is also intolerant to those?

Thank you!!!

Jan

:ph34r:

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Usually some kind of stress or trauma can trigger celiac. Don't know about that with children though.

Whether she wants to stop eating dairy and soy is up to her. If she already has a lot of damage I would encourage her to give it 6 months without them and then reintroduce them at separate times.

I'm not sure about her healing, but it would seem that if she had a lot of damage done to her intestines that she wouldn't be getting as much of some nutrients. Is she on a multi vitamen?


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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I am in the same position as your girlfriend. I am from Canada as well and i have been through months and months of testing after 2 years of feeling terrible. Almost all of your girlfriends symptoms is what I deal with everyday. My doctor did blood test for me, as well as the barium x-rays, and I find out my results tomorrow.

If, the blood test comes back negative, i plan on just going celiac free and seeing how i feel. I have learned from this website that almost everyones blood test come back negative, which i still dont understand.

I don't know much about this enterolab testing, not sure if its even offered in Canada. How is this test different from regular blood tests?

Please let your girlfriend know I understand hers (and yours) frustration with this, my boyfriend has been very supportive, but it does tend to cause some stress with my constant complaining about my stomach.

Please keep me posted on her celiac free diet and how its working for her.

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