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Celiac Or Gluten Intolerant: Does It Matter?


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24 replies to this topic

#16 Guest_~wAvE WeT sAnD~_*

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Posted 10 August 2004 - 08:23 PM

Hey everyone!

I agree with all of you, but I just wanted to add that I think if worst comes to worst before a biopsy, consider the impact your prolonged symptoms will have on your body/overall health before you decide to reintroduce gluten:

For example: If you are vomiting for several weeks off/on, and can't get through meals without vomiting, how much more helpful will it be for your biopsy? Is it worth the harm, since one must wait at least a month to see a specialist? That was my case, and at the worst point I kept NOTHING down---I probably would have died.

Otherwise, I wouldn't know, but it's up to you.
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#17 juice

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Posted 21 August 2004 - 05:12 PM

Hi
You can be gluten intolerant and not have Celiac. You can never get celiac if you do not have the gene. Even if you are gluten intolerant only, it will never turn into Celiac. You can have a copy of a gene that predispsoses you to gluten sensitivity. Now the question, so it is better just to be gluten intolerant? The answer is NO! In either case you can develope damage to the villi. Of course the chance of damage with Celiac is evident and the damage you get to your villi with just gluten sensitivity could be as low as 1%, but that doesn't mean it is ok to eat gluten because you are very susceptable to all the autoimmune diseases, (lupus, RA, ect, and of course ailments like bone pain, nerve damage, I could go on). So the bottom line is, what ever your diagnosis is, Do not eat GLUTEN! gluten free and loving every healthy minute of it, :D--------Debbie
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#18 kalo

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Posted 21 August 2004 - 05:26 PM

I'm curious where you heard that you can't have celiac without the gene. In all of my research I've read that once the intestines are damaged it's called celiac. Do you disagree? Just curious.
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#19 gf4life

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Posted 21 August 2004 - 05:56 PM

Hi Debbie, I would also like to know where you got your information and "statistics". Not that I disagree with it, I just like to collect information and some of what you said, while I believe it is true, I have never seen in print anywhere. So if you know of a new source of info please point us in the right direction. :)

I am gluten intolerant, and while I apparently didn't show damage in my intestines, I do carry one of the genes for Celiac. I do react badly to gluten so I am gluten free. I am not doctor diagnosed, but have come to realise that it isn't necessary. It might be nice to have the "official" diagnosis, but I have managed to get most of my children's doctors to support the diet for them and all of their schools, church sunday schools, VBS leaders, etc. to assist keeping my kids gluten-free while they are away from home. I am able to bring gluten-free food into theme parks without a doctors note and so I don't know that it is necessary to have one. I might eventually come acrossed someone who demands a doctors note, but that has not happened yet.

I hope you are able to decide what is best for you. Going back on gluten is something that I do not recommend for anyone who is considering more tests. I did this and it just made me sicker. I won't do it again.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#20 LisaP

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Posted 27 August 2004 - 08:20 PM

I am the Celiac in my family and both my children had 2-3 times the normal IGG antibody level when a blood test was taken, although their IGA was normal. I took both children to a good pediatric GI doctor who sees alot of Celiac children and this is what she said to me:

Based on the blood test, an endoscopy on my son, and my observations that my children's bodies work slightly better when they eat gluten-free, she called their symptoms "gluten sensitive". The way she explained it was that unlike me, who has to be gluten-free, my children can have a "break" every once in awhile....like a Bday party or eating out.

Sure the chance is that someday they could develop celiac disease and as their mother, I am constantly on the look out for any symptoms. But according to our doctor, they could carry the gene and never develop the disease. The gene must be activated. From what I have read it takes three things to develop celiac disease:
1. The gene 2. Gluten in the diet 3. Some stress to set off the gene. So the way I see it, they are loaded guns that could go off.......but it is not predetermed that they have to. The doctor pretty much said the less gluten, the more we lower their odds of developing the disease.

Nothing like playing Russian roulette as a mom....even if my children are @ 98% gluten-free most of the time!!!!

I feel for you moms that have gluten-free children. It is truly a huge challenge. It's challenging enough trying to be a gluten-free adult!!!!!!!!!!!
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Lisa

#21 EmilyP2004

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Posted 28 August 2004 - 05:55 AM

*******************************************************

Coeliac disease - allergy, intolerance, or what?

Excerpt from Gluten-free Friends Fall 1996 (Vol. 2, No. 3) R. Jean Powell, editor Montana Celiac Society 1019 So. Bozeman Ave. #3 Bozeman, MT 59715.


celiac disease, also known as gluten enteropathy, is neither an allergy nor an intolerance. Gluten enteropathy causes damage to the lining in the small intestine, which interferes with the absorption of nutrients. Neither allergies nor intolerances lead to this sort of intestinal damage.

http://members.ozema...iac/define.html

*****************************************
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#22 mpeel

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Posted 30 August 2004 - 11:18 AM

I think that's from two pieces of misinformation many doctors have:

1. There aren't any serious long term complications from being celiac (except symptoms) or that going gluten-free doesn't reduce the risk of the long term complications (my allergist fell into the later category).

2. The diet is overbearingly hard, painful, and practically impossible for anyone but the most intelligent and isolated person in the world.  (My allergist also fell into this category.  Of course, I'm using a bit of hyperbole here, but you get the idea.)

I think my family falls for both these "lies". My dad was diagnosed via blood tests at 3 y/o (50 years ago). He was put on a barley, rice and phenobarbital diet. Symptoms resolved and he was told he outgrew it. But, he has not been "normal" since. He goes four to five times a day - A DAY. He has had polyps removed. His mother has had colon cancer. My aunt and I have been diagnosed IBS. But, they claim there is no reason to be so concerned about my daughter getting gluten.

Also, I have found that once you change your mindset, living gluten-free is quite easy. I say that not being completely gluten-free myself yet. I have worked so hard to keep my girls gluten-free that I am only now (15 months later), focusing on me. At home we are totally gluten-free. It is at work that I slip. Mainly, it is money. A $.99 hamburger is much easier on the budget than the $5.50 salad. But, that is changing. I am going to be completely gluten-free by the end of September.

Michelle
mom to Beth, dairy intolerant, gluten-free since Aug 04
and Sam, dairy intolerant and gluten-free since June 03
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#23 Guest_barbara3675_*

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Posted 30 August 2004 - 05:45 PM

Just tried to go to enterolabs.com and it came back as there isn't any such thing. Please direct me. I did a search on google and ask.com.....nothing. Is my spelling right. I want to check into the testing. Barbara
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#24 gf4life

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Posted 30 August 2004 - 06:43 PM

Barbara, you need to drop the "s" . Here is a link:

http://www.enterolab.com

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#25 kalo

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Posted 31 August 2004 - 11:05 AM

I think my family falls for both these "lies". My dad was diagnosed via blood tests at 3 y/o (50 years ago). He was put on a barley, rice and phenobarbital diet. Symptoms resolved and he was told he outgrew it. But, he has not been "normal" since. He goes four to five times a day - A DAY. He has had polyps removed. His mother has had colon cancer.
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No wonder your dad has problems. Doesn't barley contain gluten? Has he since gone strictly gluten-free? Sounds like he DIDN'T have a good doctor. Hope you can help him out.
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04


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