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ruddabega

Celiacs Off Gf Diet?

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I was talking to my cousin, and she (who is big on Chinese medicine) said that she's talked to many Celiacs who can handle bits of gluten. She was suprised to hear that I would "never ever eat gluten". Has anyone done this? Gone off gluten and had an okay response? I didn't think it was really possible with Celiac, but I could be wrong...


Camila

Dixon, California (near Sacramento)

18 years old

Diagnosed by blood and biopsy Nov. 2004

gluten-free since Nov. 2004

continual digestive problems

Crohn's disease diagnosed 1/8/06

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It's not true. If you have celiac disease and eat gluten, you will be doing your body serious harm. That never changes. Perhaps the confusion lies in cases were people don't have any outward symptoms, so they feel ok after eating gluten - but they still shouldn't do it, it will be damaging them. Or perhaps these people were merely wheat sensitive and could handle a certain amount?

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Cornbread is right--a celiac can never have gluten--it will always do damage, even if the person doesnt have outward symptoms. I can eat barley without knowing it, but I know it is still doing damage inside. AND, no I dont eat barley, it was something I didnt catch at the time. I had a vitamin company last week tell me barley is ok for celiacs--they did get a speech from me. Your cousin is wrong and needs to be corrected. Deb


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I agree with darlindeb and cornbread. Ask your cousin how much rat poison would be safe for him to eat. Even if there are no outward/noticeable results from ingesting gluten harm is being done. I know, I've done it. For the longest time I didn't understand malt, but after joining this forum I realized that I had been glutening myself for years - albeit in small amounts :( . So three weeks ago I stopped eating the cold cereal that I thought was safe for me (malt was in the ingredients), stopped the rice cakes (supposedely severely cross contaminated. Don't know for sure, but why take chances), anything oat, and the malt beverages. AND I FEEL GREAT!!! I thought I was doomed to a life of low energy levels and fuzzy brain because of celiac disease. Nope, it was me doing it to me!!! Since I've cleaned up my diet, I've finished off a wood refinishing project that had been in the garage for 5 years, rearranged the garage, finished off a quilt top, run circles around my husband and have lost 3.5 pounds (49.5 more to go). So when the subject comes up again, ask for the empirical sources he's quoting, or for which article in the JAMA he read it in!

Keep on keeping yourself gluten-free! :)


gluten-free since Oct 1996

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No way! A celiac can not handle gluten..even if they do not get symptoms from it the damage is still being done.


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

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I was talking to my cousin, and she (who is big on Chinese medicine) said that she's talked to many Celiacs who can handle bits of gluten.  She was suprised to hear that I would "never ever eat gluten".  Has anyone done this? Gone off gluten and had an okay response? I didn't think it was really possible with Celiac, but I could be wrong...

<{POST_SNAPBACK}>

Not, biochemically speaking, true. A person may not notice the symptoms - either because they don't develop any outward symptoms or because they are mild enough to write off as something else - but celiac disease is a chemical reaction, and the presence of gluten is what starts it, regardless of the amount, and the destruction of the intestinal villi is at the end of it.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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There is no cure for celiac disease.

If celiacs are eating gluten and not getting sick then they may have no symptoms; however, they are still damaging their intestines.


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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Someone with gluten intolerance probably could ingest small amounts, depending on the degree of symptoms that resulted.

<{POST_SNAPBACK}>

Hi you guys, I am new to the site and I have talke to a couple of people. I am newly diagnosed. thankyou for talking about this because I have been wondering about this. I did get some gluten a few days ago and it didnt bother me so I thougt man it didnt hurt so maybe they are wrong or maybe if I only have a little bit it doesnt matter. I have never made it to my dr yet. my work schedule has not allowed it. I also have been eating cereal with malt. So I am not gluten free at all. so tell me something if anyone know. I was really really sick. I mean horribly sick. and I am alot beter now. But if I am still getting gluten then why do I feel better? Is it because I am only getting a small amount instead of a major amout?

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Hi you guys, I am new to the site and I have talke to a couple of people. I am newly diagnosed. thankyou for talking about this because I have been wondering about this. I did get some gluten a few days ago and it didnt bother me so I thougt man it didnt hurt so maybe they are wrong or maybe if I only have a little bit it doesnt matter. I have never made it to my dr yet. my work schedule has not allowed it. I also have been eating cereal with malt. So I am not gluten free at all. so tell me something if anyone know. I was really really sick. I mean horribly sick. and I am alot beter now. But if I am still getting gluten then why do I feel better? Is it because I am only getting a small amount instead of a major amout?

<{POST_SNAPBACK}>

Some people do not get symptoms at all. I can tell you now, if you are celiac and still eating gluten you are still causing damage and you are not healing and will not be until you are completely gluten free. Cutting back on it may have helped some of your symptoms but it will catch up with you. Some people do not get symptoms ever and some only get it with larger amounts...everyone is different but even without symptoms the body is still being damaged. Even people who eat a small amount as frequent as once a month have been shown to be just like not following the diet because the damage keeps reoccuring.

You need to be gluten free including with products like makeups, soaps, shampoos, hairsprays, perfumes, etc..in addition to food.


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

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This sort of thing bothers me when people think they're an authority on Coeliacs. The only people who seem to know about Coeliacs disease are Coeliac sufferers, but you've raised a good point.

Over here in the UK, we have some products that say gluten and wheat free, but next to the ingredients list will be say, wheat starch*, with its little star and you read it and it says that its been modified to such a degree that there are such tiny amounts of gluten, that only those with extremely sensitive gluten enterothapies should avoid it, but 'normal' coeliacs should be okay. Please discuss with your own personal dietician.

These labels frighten me. I avoid these foods too, even though they're in the gluten-free section in the supermarket.

Gluten is meant to be poison to us. I don't want to test myself to see how 'sensitive' I am. I don't want to get sick again. I've been sick for over twenty years straight thank you very much.

What do others think about this codex?

Nicolette :huh:


Diagnosed with celiac disease via blood test September 2005.

gluten-free since September 2005

Diagnosed Rheumatoid Arthritis Aug 2004

Diagnosed early osteoporosis Aug 2004

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Oooh, the Codex norm... I wrote a rant about it already once (in a thread about Norway)... :angry:

I'm really sensitive, and so I can't trust ANY products, even the ones labelled "gluten free" because they still might contain an amount of gluten that is under the norm, and well, I react to them. So any product lists etc. over here are almost useless to me, I have to always check with the manufacturer to ask if their product is truly gluten free or just "gluten free". AARGH! I pretty much only eat fresh produce, plain meat and fish and rice.

What I always wonder about is - if you eat all these so called gluten free products, say a bread baked with codex norm wheat startch where you put jam on that has glucose syrup in it and then a sausage that also has "traces" of gluten etc. etc. - how do you know when you've reached your limit of tolerance, if such a thing even exists? Has someone actually made a long term study to see if these "less sensitive celiacs" are still healthy after a life time on a codex-norm-gluten-free diet?

In a way I think I'm lucky to be so sensitive, if I eat something I shouldn't, my body lets me know it! :P

Pauliina

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I did get some gluten a few days ago and it didnt bother me so I thougt man it didnt hurt so maybe they are wrong or maybe if I only have a little bit it doesnt matter. I have never made it to my dr yet. my work schedule has not allowed it. I also have been eating cereal with malt. So I am not gluten free at all. so tell me something if anyone know. I was really really sick. I mean horribly sick. and I am alot beter now. But if I am still getting gluten then why do I feel better? Is it because I am only getting a small amount instead of a major amout?

<{POST_SNAPBACK}>

Everybody reacts differently, and as time goes by, I'm finding out I react differently, depending on type/severity of gluten. I finally gave up my cereal with malt for flavoring, and I'm feeling better than I have in ages. But had a dining disaster at a seminar three weeks ago, and ended up with D almost right off the bat, and that had never happened to me before. Then this week I'm sure I got glutened, but didn't have any of the severe abdominal problems, just majorly depressed - I mean really weirded out. And of course the fatigue. But I'm getting better again rather quickly. I think that by maintaining ingestion of gluten you aren't getting as healed as you could be. Wouldn't you rather be 100% better? And no one knows just how much damage is being done until too late. I seem to have a slight neurapathy problem, but maybe that will heal in time too. I'm mad at myself for ignoring the word "malt" in so many things, I only have myself to blame for the numbness that I have now.


gluten-free since Oct 1996

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Since I've cleaned up my diet, I've finished off a wood refinishing project that had been in the garage for 5 years, rearranged the garage, finished off a quilt top, run circles around my husband and have lost 3.5 pounds (49.5 more to go).

Wow! :lol:


Stef

Next goals:

Results for 2011:

1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting

August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)

gluten-free since 07/21/2004

Shermans Dale, PA

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Wow! :lol:

<{POST_SNAPBACK}>

Hey stef, where have you been? I'd love to see you at any of your competitions. I had a red belt in Tae Kwon Do for years, never could break my boards for my black belt. I kinda miss it - it was great excersize and discipline.


gluten-free since Oct 1996

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I thought I was doomed to a life of low energy levels and fuzzy brain because of celiac disease.  Nope, it was me doing it to me!!!  Since I've cleaned up my diet, I've finished off a wood refinishing project that had been in the garage for 5 years, rearranged the garage, finished off a quilt top, run circles around my husband and have lost 3.5 pounds (49.5 more to go).

<{POST_SNAPBACK}>

It is the most wonderful feeling when the same people who used to complain that I couldn't keep up with them now complain that they can't keep up with me.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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Hey stef, where have you been?  I'd love to see you at any of your competitions.  I had a red belt in Tae Kwon Do for years, never could break my boards for my black belt.  I kinda miss it - it was great excersize and discipline.

<{POST_SNAPBACK}>

HI you all, I want to ask a question. I have heard you all talk about depression and triedness. will you give me some details. you got some gluten and how long befor you got extremly tired or depressed.? Have you had major depression through the years that you have tied to this or tiredness. I am new so I an just learning. I was on anti depressants for years. prozac and all kinds. On anbien for sleep but still couldnt sleep. Got fat weight 190 lbs. now I am down to 138lbs but I was so sick and lost it so fast. I am just wondering where all this fits in. Thankyou for all of you helping me.

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For what it's worth - my two cents.

Some of you have read my posts. Others have not so I will say up front that I am absolutely adamant on the gluten free issue.

Those who think they can have 'a little bit' are like the intrepid folks who gathered out at Three Mile Island (- Nuclear facility PA) a few years back when there was a leak there. They couldn't get nuked! After all - you couldn't see anything! Likewise if a small amount of gluten doesn't cause some overt symptom you must be okay. Right?

Wrong, wrong, wrong. I know from my own personal experience that this is not true. I thought my problem was grains and yeast so I gave up everything that had flour in it - gave it up to the point that my distressing symptoms disappeared. After that I ate small amounts of flour containing products - but not a lot and not often.

Now after 15 years I have a neurological disorder that affects walking, balance, and causes essential tremors of both arms and hands. Gluten attacks and destroys brain cells!

I know now of course that gluten was the issue - not the grains. I am Gluten-free Casein-free now. The damage is done though and I would strongly urge anyone with celiac or non-celiac gluten sensitivity to get as far from this stuff as you can. It is, to you, a poison. Treat it with the respect any poison is due.

Remember in books and films when the goal is a calculated murder - they most always use poison - like arsenic - that can be given in small doses - but it ultimately kills.

Gluten attacks body cells - relentlessly. How many cells can you spare? Claire

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HI  you all, I want to ask a question. I have heard you all talk about depression and triedness. will you give me some details. you got some gluten and how long befor you got extremly tired or depressed.? Have you had major depression through the years that you have tied to this or tiredness. I am new so I an just learning. I was on anti depressants for years. prozac and all kinds. On anbien for sleep but still couldnt sleep.  Got fat weight 190 lbs. now I am down to 138lbs but I was so sick and lost it so fast. I am just wondering where all this fits in. Thankyou for all of you helping me.

<{POST_SNAPBACK}>

You all? You all from the South? Just joking :lol: . When I get glutened, it depends on the amount and time since my last glutening. Usually within 12 to 24 hours I'd get that horrible fatigue where I felt like I was wading through molasses. And the depression would last at least 36 hours. But I've been on Zoloft for 5 years, which was 4 years after I developed celiac disease. Just this week, after finally eliminating gluten from my diet (all those pesky hidden sources :angry: ) I thought I'd try cutting back on the meds just to see how much of the depression was from being glutened and how much was intractable depression, otherwise known as dysthymia. And I got my answer - can't go off meds. But now I know. But when I get glutened, the depression is stronger than what Zoloft can handle so I just have to tough that out until it lifts and I can get back to my "normal" state, If that makes any sense :blink: The longer you go gluten-free, the more healing takes place and you will feel your energy come back and you mood lift somewhat (don't know if your depression is from celiac disease or other causes). But the thing is to be 100% gluten-free. Hope this helps


gluten-free since Oct 1996

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You all?  You all from the South?

<{POST_SNAPBACK}>

Naw, in the South we say "y'all." ;)

I've certainly experienced the fatigue when eating a reactive food. I feel SO tired. Normal activity seems impossible. If I get still, I'll nod off. All I want to do is take a nap. It just about takes away my will to live... and I feel guilty because I'm not getting anything accomplished.

When I'm having digestive symptoms, I get really depressed, weak and listless. There's this feeling of not being able to cope with even the smallest problems. I get upset easily and feel almost panicky. I think, "I can't deal with this right now." All I want to do is crawl into bed and pull the covers over my head.

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