Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiacs Off Gf Diet?
0

20 posts in this topic

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...

0

Share this post


Link to post
Share on other sites


Ads by Google:

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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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! :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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?

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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:

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,366
    • Total Posts
      920,555
  • Topics

  • Posts

    • Good grief!  :o. I'm so sorry, I wish there was something I could do or say to help you.  I agree with the NP, your primary needs to be requesting copies of your records from the other doctors, as well as the records and lab reports from your hospital stay.  They are supposed to work together as a team, not just individually out in left field.
    • Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue 
    • Our own resident gluten-free expert is Suzie Davies. Suzie has been dedicated to gluten-free products since she was diagnosed with celiac disease ... View the full article
    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,442
    • Most Online
      1,763

    Newest Member
    mommedic
    Joined