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Celiacs Off Gf Diet?


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19 replies to this topic

#1 ruddabega

 
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Posted 24 October 2005 - 09:34 PM

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...
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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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#2 cornbread

 
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Posted 24 October 2005 - 10:31 PM

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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#3 darlindeb25

 
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Posted 25 October 2005 - 01:49 AM

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
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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!

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#4 nettiebeads

 
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Posted 25 October 2005 - 03:06 AM

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! :)
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gluten-free since Oct 1996

#5 KaitiUSA

 
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Posted 25 October 2005 - 05:10 AM

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

 
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Posted 25 October 2005 - 11:08 AM

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.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#7 Carriefaith

 
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Posted 25 October 2005 - 11:39 AM

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.
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Carrie Faith

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#8 Jeepster

 
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Posted 25 October 2005 - 12:25 PM

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

 
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Posted 28 October 2005 - 04:40 PM

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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#10 KaitiUSA

 
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Posted 28 October 2005 - 06:34 PM

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.
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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

#11 Nicolette

 
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Posted 28 October 2005 - 10:40 PM

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:
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Diagnosed with celiac disease via blood test September 2005.
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#12 aikiducky

 
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Posted 29 October 2005 - 03:08 AM

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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#13 nettiebeads

 
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Posted 29 October 2005 - 05:07 AM

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.
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#14 stef_the_kicking_cuty

 
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Posted 29 October 2005 - 09:15 AM

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:
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#15 nettiebeads

 
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Posted 30 October 2005 - 06:45 AM

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.
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