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Question About You Going gluten-free & The Effects


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7 replies to this topic

#1 3groovygirls

 
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Posted 30 May 2009 - 08:41 AM

I have a question and I'll try to explain it right. Violet has Celiac, she has the gene for it, so obviously it comes from one of us, her parents. I haven't been tested and neither has my DH. However, I have my suspicions about it coming from my side of the family.

So here's my question. If you don't have Celiac (or don't know) has your tolerance of gluten changed at all? I'm not totally gluten-free, but I have cut out a TON of gluten. For instance we mostly eat gluten-free snacks (crackers, chips, etc) gluten-free pasta, gluten-free cereal. Basically I don't eat much gluten anymore by default. Now I'm finding that when I have something with gluten (beer in particular) it effects me HORRIBLY. Gas, bloating, diarrhea. It never used to. Is this common? If you go gluten-free, then when you eat it again does it bother *everyone* or would it just bother you if you might have Celiac or an intolerance towards it? My DH doesn't seem bothered by it, but I really am now. Do you think that's a sign that she gets it from me, or just a coincidence?

So I guess what I'm asking is, as a parent, once you cut out a lot of gluten, did you find YOUR tolerance for it went down even if you don't have Celiac? Or was it an indicator that maybe you should go get checked?

(BTW, I know I should get checked, but I've asked 2 Dr.s so far and none will test me b/c they say if I'm asymptomatic I don't need to be and "most cases are sporadic and not genetic". Basically both Dr.'s were totally wrong but I can't seem to find one who will and since I DO feel fine it hasn' been my top priority, KWIM?)
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#2 lizajane

 
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Posted 30 May 2009 - 07:10 PM

i don't know if this will help, as I am the one diagnosed with celiac and THEN i took my kid off gluten. he had some classic signs of celiac in children and they ALL went away when i took him off gluten and they all come back when he is accidentally glutened.

BUT... i will say... you may not have noticed your own symptoms because you may have attributed them to something else and only noticed them now that you realize when you do or do not have gluten. my most serious symptom was fatigue- and foggy brain and irritability. it never ever occured to me that i had more gas than anyone else until it all went away when i stopped eating gluten! i never would have guessed that my near constant nausea was caused by celiac. i thought i was under stress or over-ate.

really, it doesn't matter if you have it or don't if it makes you feel bad to have it. if you don't eat it anymore and you feel better, then don't eat it anymore. the problem comes if you still eat it anyway. if you DO have celiac and you continue to eat gluten, you have a much higher risk of lymphoma. pretty good reason to either 1) never eat it or 2) get tested before you DO eat it!
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#3 mushroom

 
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Posted 30 May 2009 - 07:23 PM

That is fairly classic for a celiac, to have a holiday from gluten and then feel much worse when they eat it again. It is the reason many of us are self-diagnosed. It would be too dreadful for us to even consider going back on gluten for the 2-3 months necessary for the testing to be accurate.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 Kaycee

 
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Posted 30 May 2009 - 07:57 PM

Hi, what you describe has been the case for me. I went on a diet to loose weight a while back while still eating gluten. On the diet I wasn't eating much bread and or processed food, so not much gluten, and I felt quite good. My diarrhea eased off and I felt better, but the relief was only temporary. I am guessing my body was getting used to the lower gluten, but it wasn't being fooled as it wasn't long before the symptoms were all back. It was only after that, that I looked for answers and that is when I arrived at the conclusion it was gluten related. The doctor confirmed this with a diagnosis of coeliac, and that is when I started a gluten free diet.

Yes, if I slip up now, even with the minutest amount, I get very bloated, irritable, and the dreaded D, to name but a few symptoms. These are more symptoms than I realised I had before. I did not realise just how bloated I had been feeling. I guess at 48 years old, and having eaten gluten all my life, those annoying issues were just part of me and probably felt normal to me. Yes I do react quite differently to gluten now than I did before.

I am the only one diagnosed in my family. My mother is having issues with similar things, but her doctor says coeliac is not genetic and he doesn't feel she has enough symptoms to warrant being tested.
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#5 mushroom

 
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Posted 30 May 2009 - 08:54 PM

My mother is having issues with similar things, but her doctor says coeliac is not genetic

What??? What rock did he crawl out from under?? Does your Mom believe this?? You need tp research on here and get information on paper for her to take to him. Studies with citations that he can't refute. He needs an education.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 Kaycee

 
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Posted 30 May 2009 - 11:11 PM

Neroli, I would love to do what you say. But first of all I would need my mum and dad to believe there is a problem. I know it might sound a bit slack on my part, but I have discussed this exact thing with mum and dad. Mum goes as far to say, that my problems are similar to hers, but she is adamant that it could be the same disease. My father initially thought that it would be too hard for mum since she is in her late 70's. It doesn't help that I live in Northland and they in the south island.

I feel bad enough knowing I can't help, and that nothing I say will make a difference. I guess that is families for you, if I go on too much I get silenced, if I don't say anything, things stay the same. Vicious circle.

Cathy
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#7 mushroom

 
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Posted 31 May 2009 - 01:13 AM

Well, Cathy, I can't say that I don't know how it is with families. My eldest sister and I are both gluten free and self-diagnosed, but she has a diagnosed celiac daughter; our middle sister refuses to even consider that she could have a problem even though I have seen multiple times grand evidence of similar symptoms to mine; she merely says, "I just get on with it," implying that we are making a big fuss about nothing. I just hope it does not rise up and bite her on the bum like it did me. :D

That being said, that doctor needs to be brought up short. Do you think you could mail or email the information to him since he is obviously too lazy to look it up himself?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 ang1e0251

 
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Posted 01 June 2009 - 04:57 AM

It does seem to me that you also have a problem with gluten if you are reacting to it now. Some people want to think you "did it to yourself" because you restricted gluten foods. I disagree with this. I only eat pumpkin in the fall but it doesn't make me sick even though I haven't had any for 9 months. I usually only eat strawberries in warm weather when they are in season and again I don't react to those. Same with watermelon, cantalope, and mostly with turkey. If you're reacting to gluten, you have a problem with it. If it's an intolerance and not full out celiac disease, no test will show that.
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