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What's It Gonna Hurt?


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26 replies to this topic

#16 shopgirl

 
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Posted 27 February 2011 - 06:28 AM

Have you ever seen the documentary Super Size Me? That cured my fast food cravings long before I ever found out I was Celiac. Just driving by a McDonald's reminds me of that movie and turns my stomach.
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

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#17 Skylark

 
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Posted 27 February 2011 - 12:11 PM

I haven't read that anywhere. My reading (and I only got my information from Healthier Without Wheat) suggests that gluten intolerance involves an immune response that involves JUST AS MUCH RISK as the one from celiac. The only difference being in celiac disease the immune system also attacks the villi. Any sort of chronic inflammation (which would also occur in a gluten-intolerant person) can lead to symptoms and diseases that are too long to list here. Based on the book I'm reading celiac disease is only one form (or one end result) of gluten intolerance and both should be treated with the same stringent adherence to a gluten-free diet. One is not more severe than the other.

This is not correct. I don't have time to pull references for people this weekend but I suggest you check out the recent IL-15 research. It is more recent than that book. Books are always out of date because of the fairly long time lag between writing and publication.
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#18 ravenwoodglass

 
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Posted 27 February 2011 - 12:21 PM

If you are gluten intolerant rather than celiac, it isn't terrible for you to do the experiment and find out. If you're diagnosed celiac, it's a bad idea as each glutenening triggers autoimmunity and damage.

I looked through quite a few articles on the IL-15 research and didn't find anything that stated that gluten intolerance does not have autoimmune effects. Could you give us a link to the research that says with certainty that gluten intolerance isn't an autoimmune impact?
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#19 rosetapper23

 
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Posted 27 February 2011 - 12:39 PM

I'm going to be bluntly honest here. I was completely gluten free for the first 18 months after being diagnosed as having celiac, and then I read an article that said that once the gut heals, a person might be able to cheat occasionally and have no reaction--not everyone, mind you, but a number of people in that so-called "study" apparently did not suffer from occasional cheating.

That said, I then proceeded to test the theory and eat my favorite brand of takeout pizza. Prior to doing this, I'd had trouble raising my ferritin level. After the pizza, my numbers plummeted almost to zero, and no amount of oral iron had any effect. I ended up on intravenous iron for several years.

Then last April, after seven years of being gluten free, I accidentally ate gluten at a potluck (the person had assured me that there was no gluten in it, and I was famished). Five weeks later, I suffered stress fractures in BOTH feet and was in extreme pain for the next six months because my doctor and an orthopedist could not figure out why my feet were causing me so much trouble. I finally researched it myself when I realized that the tendons might be involved. Sure enough, I found out that if a person is suffering from certain nutritional deficiencies (such as manganese, zinc, and silicon), you can end up suffering from something called "floppy tendon syndrome," which results in stress fractures of the feet. After I took supplements for manganese, zinc, and silicon, my feet stopped hurting after just a few days. After two weeks, I could even wear high heels again.

So...obviously, the lesson to my story is that you eat gluten at your own risk. If you damage the part of the gut where calcium is absorbed, your teeth will start to break. You could end up on intravenous iron for the rest of your life...or with shattered foot bones....or neuropathy....or migraines....or brain lesions. It's like playing Russian Roulette. Why take the chance? You've been given back your health! It's now up to you to safeguard it for the rest of your life.
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#20 cassP

 
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Posted 27 February 2011 - 12:55 PM

i think most of us will agree that we feel pretty damn good- and have found substitutes for almost everything- that even taste better... and that its more the convenience that hurts the most...

i mean- what am i gonna do the next time i go to a music festival... or have been waiting in line all day, and am STARVED... im gonna have to eat the melted gluten free bar i snuck in.. instead of downing a Polish sausage in a crusty bun :( back when i was just doing Atkins/Bloodtype- i would have just eatin the sausage- but now we know there could be gluten in that too :(

just so annoying..
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#21 zus888

 
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Posted 27 February 2011 - 02:31 PM

You mean this?

"The study, to be published early online Feb. 9, points to two chemical signals -- interleukin 15 and retinoic acid, a derivative of vitamin A -- as triggers for the inflammatory response to gluten, a protein found in many grains that causes celiac disease."

Sounds to me that they are talking about gluten intolerance that can lead to celiac. But I've not done a ton of research. Is there a specific place where all this research is located?

I also checked out the blog of the author of the book I'm reading and he has not changed his stance regarding celiac being one end result to gluten intolerance. Although I am very new to this, his reasoning seems sound and makes a lot of sense to me, especially since gluten-intolerance can lead to so many other issues (like, pretty much ALL the autoimmune diseases I have). I think celiac is just one other thing gluten intolerance can lead to. JMHO.
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Suzanna

#22 zus888

 
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Posted 27 February 2011 - 02:50 PM

I also found this:
http://www.celiac.co...inns/Page1.html

which states:
"Gluten intolerance arises from an autoimmune reaction in the small intestine to the gluten protein found in wheat, barley and rye."

and:
"The researchers are hoping to use the genetic information to craft better screening tests for gluten intolerance, as up to 75% of people with gluten intolerance remain undiagnosed due to mild or atypical symptoms, and many with condition may unwittingly suffer damage to their intestinal villi."

Just from my limited research, it seems that all indications are that gluten intolerance leads to a number of other symptoms/diseases including celiac, and that it is all a result of an immune response.
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Suzanna

#23 Camp Laffalot

 
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Posted 27 February 2011 - 04:04 PM

I hate to say this, but I'm having fun discovering new favorites that are as good as/often better than my old faves!

I was just diagnosed about a month ago, and while I'm guessing that I'm about 99% gluten free now, and feeling a bit better, I am having waaaaay too much fun trying all the gluten free stuff.
Some favorites: Any bread by Udi's, Bakery On Main "Granola", and those intense dark chocolate cookies by Pamela's Cookies*. The Glutino Pizza is handy to have in the freezer, too.

We went camping with friends this week and went out to dinner at a favorite seafood place where I have always ordered the fried softshell crabs. This time I had them naked and sauteed in butter and garlic instead, with a side salad, and they were a gourmet treat. Tonight I had a grilled sirloin burger with Cabot's Cheddear Cheese on a mult-seed gluten free English muffin, pickles, and some Frito Lays corn chips. LOVELY!

*I'm gonna need a 12-step program for Pamela's Cookies, I think..........

Hey, I'm an old lady (71) and if I can change my eating all around, so can you young 'uns.....and enjoy it, too! Don't go back to the pain.....go forward on a new adventure!!!!

Hugs all 'round the room!
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#24 CarolinaKip

 
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Posted 27 February 2011 - 04:39 PM

I'm going into my 10th month gluten-free. I feel proud of myself for the struggle it has been. I can only speak for myself when I say, no I won't cheat. I really miss the things I love! I miss the famous BBQ sandwich and roast pork sammy around here, my mexican place, paneras, beer!! I miss a lot however, I don't miss being in pain 24/7 and feel like I was going to die because my gut throbbed with pain so much and no one could tell me why. I don't miss the migraines or the brain fog.....or being ill with the big C or days with D. I don't miss being just plain ill with everyone.

I'm sad some with being gluten-free, however, I'm determined to find new wonderful things to eat. To find places with gluten-free menus with staff that know gluten-free. I am excited that I found a support group! I'm hoping it will work out, I cannot wait to be around so many celiacs in one room or eat gluten-free pizza with them. Thinking my chances of CC will be less with so many gluten-free orders!! I'll let you all know.

I didn't ask for celiac, but here I am with it...I can stay sad or get positive with it...it's a challenge and I'm stepping up to it.

For me "what's it gonna hurt?" Being in so much pain and sick for at least 3 days, no food is worth that to me. Knowing I'm harming my body after being so good to it, nope, not for me...the pain and damage isn't worth any food. Think of it this way, for about 30 minutes of food pleasure, how many hours and days do you have to be sick and in pain. Just doesn't make sense for me.
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How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.
George Washington Carver


Blood work positive 4/10
Endo biopsy positive 5/10
Gluten free 5/10

#25 kaki_clam

 
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Posted 27 February 2011 - 05:14 PM

i didn't do it...i didn't cheat...i went out to dinner with my boyfriend's family and had a gluten free salad.
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#26 Jestgar

 
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Posted 27 February 2011 - 06:32 PM

i didn't do it...i didn't cheat...i went out to dinner with my boyfriend's family and had a gluten free salad.

Because you are just too awesome to want to hurt yourself. :) Good for you!
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#27 Camp Laffalot

 
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Posted 28 February 2011 - 07:28 AM

i didn't do it...i didn't cheat...i went out to dinner with my boyfriend's family and had a gluten free salad.


I proud of you, too! Good on ya!
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