Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Withdrawal


JerryK

Recommended Posts

Jestgar Rising Star

Jerry, please don't be distressed about the minor bickering that goes on. With so many people involved there are going to be personality differences.

I think that everyone is very supportive of each other and when someone is having any kind of personal crisis I believe that everyone rallys around that person.

It's the general knowledge contained in all the members of this forum that has allowed us all to be well enough to be able to bicker.

I hope that everyone remembers this and also that all we know of each other is what we type. It's not worth being angry at typed words.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 68
  • Created
  • Last Reply
darlindeb25 Collaborator

Jerry, I am sorry that you feel uncomfortable now. The topic was gluten withdrawal and I did offer you answers more than once, very clear and good answers.

Gpf hijacked the thread with his attitude and I never attacked him, I simply asked him not to tell others it is ok to eat gluten and no matter what he says now, he did say, "what difference does a few days make?" It makes a big difference. Also, he did say he intentionally ate gluten pizza, intentionally!

Gpf, I too ate gluten for more years than you have, I am 51 now, I was 45 when I went gluten-free and I had been sick for years and years by that time. I do know the damage that "a little gluten" has done to me. I have had times when I was accidentally glutened, times when I took a chance on kisses from grandbabies, kissing my sweetie, chances at my job, eating at a friends and on and on. BUT, NO TIME HAVE I EVER INTENTIONALLY PUT GLUTEN IN MY MOUTH. I have not ever had pizza from a foreign country and do not ever desire to do so. I KNOW I CANNOT EAT GLUTEN--never again, for any reason and that is the message we need to get across to others.

Also, yes, moderators have rights, just as members do. We have a right to support our opinions and just because a topic gets heated does not mean it needs to stop. We have things to say and we need to say them and this forum is for us to use, isn't it? When another member says something that could be very detrimental to others, it needs to be discussed. If you as moderators allow someone like gpf to post what he did, then you need to let others respond, it's only fair. I, for one do not want to see a newbie read a post like his and go away thinking it's ok to eat gluten now and again.

In almost 6 yrs I have never, ever intentionally eaten anything containing gluten and that is as it should be for all of us. Take the disease seriously, please.

Electra Enthusiast
One of the things I've found so refreshing about this board is that the members are so very supportive of each other. Although I haven't been here long enough to understand the history here

this thread has made me uncomfortable.

What I was really hoping to discover is were there others like me who felt a bit of withdrawal symptoms after stopping gluten....things like perhaps a little more jittery...anxiety...insomnia etc...

Since we know that gluten can have quite a sedative effect on folks....

Thanks, j

Jerry, thanks so much for being honest and stating what you feel. I apologize for not staying on subject ;-)!! When I first went off gluten I had a full week of shakes, jitters, tremmers, not being able to focus, sweats, and feelings of being freezing. If I were to describe my symptoms I would say they seemed to me like what I've seen on TV when people come off from drugs like CRACK. I don't know for sure because I have never been on crack but I had some definite withdrawl symptoms. I don't have them as much now, but when I get accidentally glutened I do notice for at least a day I get hysterically depressed and can't be reasoned with and then I'm just not myself for about a week. All of the sudden I come out of it like I never even had a problem. It's the weirdest thing and If I hadn't experienced it myslef I'd probably think others were crazy for thinking this was possible just from being accidentally contaminated with a food lol!!

I also have major food cravings for about 2 weeks after being glutened. I just can't seem to stop eating. It's like I just crave stuff all day long lol!!

It's definitely no fun in my opinion!!

Canadian Karen Community Regular

I do believe that gfp said clearly and boldly that "he does not recommend it".... He is simply stating that when he gets glutened, based on the severity of the glutening and possibly the violent nature of his body's response, IN HIS CASE he has found that the best way HIS body can deal with it is to take a few days to "wean off" of it, so to speak. Kind of like letting his system down gently, instead of with a crash......

He is by no means condoning INTENTIONALLY glutening, he is just telling others how he deals with it in his own way, what works for him. He is not saying "It's okay to do this" or "It's safe to do it this way", he verly clearly had at the very beginning HE DOES NOT RECOMMEND IT.

Perhaps I am thinking from personal experience here: My dad used to be (for most of his life) a binge alcoholic. Alcoholism has pretty well destroyed his life, relationships with his children, marriage to my mother, the list goes on and on....... When my dad was off alcohol, but fell off the wagon and went on a binge, the easiest way for him to get back off alcohol was through the "weaning" process. Cold turkey would put him into the DDT's so bad, he could very easily have died..... Just trying to give an analogy that would put this into perspective.....

Karen

Jestgar Rising Star
Perhaps I am thinking from personal experience here:

Also totally OT.

I think Karen's last statement is really the basis of the disagreements. I think that everyone interprets what they see and hear and experience through the filters of their own lives. I interpreted gfp's statement basically the same as Karen. Probably because I've had similar experiences. But I also understand Deb's perspective of "never never do this" again because I've had experiences where a little bit puts me over the edge.

While I realize that it may be disconcerting for a newbie, I think that ultimately having divergent opinions is better, again because the newbie will interpret the response through his/her own filters. What one person says may be inconsequential, but another's statement may totally hit home.

Canadian Karen Community Regular
Also totally OT.

I think Karen's last statement is really the basis of the disagreements. I think that everyone interprets what they see and hear and experience through the filters of their own lives. I interpreted gfp's statement basically the same as Karen. Probably because I've had similar experiences. But I also understand Deb's perspective of "never never do this" again because I've had experiences where a little bit puts me over the edge.

While I realize that it may be disconcerting for a newbie, I think that ultimately having divergent opinions is better, again because the newbie will interpret the response through his/her own filters. What one person says may be inconsequential, but another's statement may totally hit home.

Couldn't have said it better myself...... ;)

gfp Enthusiast
I do believe that gfp said clearly and boldly that "he does not recommend it".... He is simply stating that when he gets glutened, based on the severity of the glutening and possibly the violent nature of his body's response, IN HIS CASE he has found that the best way HIS body can deal with it is to take a few days to "wean off" of it, so to speak. Kind of like letting his system down gently, instead of with a crash......

He is by no means condoning INTENTIONALLY glutening, he is just telling others how he deals with it in his own way, what works for him. He is not saying "It's okay to do this" or "It's safe to do it this way", he verly clearly had at the very beginning HE DOES NOT RECOMMEND IT.

Perhaps I am thinking from personal experience here: My dad used to be (for most of his life) a binge alcoholic. Alcoholism has pretty well destroyed his life, relationships with his children, marriage to my mother, the list goes on and on....... When my dad was off alcohol, but fell off the wagon and went on a binge, the easiest way for him to get back off alcohol was through the "weaning" process. Cold turkey would put him into the DDT's so bad, he could very easily have died..... Just trying to give an analogy that would put this into perspective.....

Karen

Karen, I agreed with your earlier statement but didn't say so just to try and be diplomatic which isn't my strong point.

However this is so spot on....I was relating my experiences, its not even that I do this every time I accidentally get glutened either, but it has provided me with insights into withdrawal which was the point of my first post on the subject.... and as your point out I started by saying "I don't recommend this but...."

Sorry to everyone but I started out by saying "I don't recommend this but...." because my whole experience is based on this.... I don't think I should have to defend myself for being honest.... I personally would have a huge problem to try and present the information I found and pretend I came by it any other way, and as Karen says I prefaced the whole post by that disclaimer..... "please kids, don't do this at home" ... perhaps I could have bolded it? Perhaps a large font size? 20/20 hindsight is wonderful but I certainly didn't expect to be attacked for just being honest...

I can't help that I discovered or I believe to have discovered certain things about gluten withdrawal from this, but to me presenting it any other way than complate honesty is not possible..... its either that or nothing ....

I guess perhaps I should have said nothing? Perhaps its like the police stuimbling over evidence that can't be presented in court? Whoah we entered the wrong appartment but their's 50 lbs on heroine here.... but lets pretend we didn't find it ? but I am not like that... I can't be like that.... and I think its really mean for people to attack me over just being honest.

and for me its not the alcoholism thiog though I appreciate why... its making the most of the end of my vacation... I dreads to admit but faced with 3 days of not eating on route to Australia I willingly ate gluten too.

I was sick as a pig, I had to deal with it for the whole vacation (I lost about 20lbs I didn't need to) but in this case I went straight back gluten-free.... I thought I could manage 3 days without eating and I was wrong.... but what else should I have done? i was at the point of being hypoglycemic, I thought I could find peanuts but Air Vietname has wheat noodles... and pretzels??? Should I go into a coma, should I ask for the flight to be grounded and pay millions or should I accept I screwed up and deal with it?

Short of not leaving home and preparing ALL my own meals I have to accept I take a risk... I guess no different from presing Add Reply right now?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mtndog Collaborator
I dreads to admit but faced with 3 days of not eating on route to Australia I willingly ate gluten too.

I was sick as a pig, I had to deal with it for the whole vacation (I lost about 20lbs I didn't need to) but in this case I went straight back gluten-free.... I thought I could manage 3 days without eating and I was wrong.... but what else should I have done? i was at the point of being hypoglycemic, I thought I could find peanuts but Air Vietname has wheat noodles... and pretzels??? Should I go into a coma, should I ask for the flight to be grounded and pay millions or should I accept I screwed up and deal with it?

Short of not leaving home and preparing ALL my own meals I have to accept I take a risk... I guess no different from presing Add Reply right now?

Are you kidding me? Faced without eating for three days, I'd eat gluten too! Yes- you would pay (as you did) but you can only go so long without food.

It makes sense that this was how you learned about gluten withdrawal, etc.

Honestly, I am similar to you in that I'd rather take the occasional risk of CC and enjoy my life than NEVER eat out, NEVER travel and live in a bubble. I know I couldn't do that- that's letting celiac control your life. I look at myself as someone who HAS celiac. Not a celiac.

Right now I'm sick from gluten because I went out to eat to celebrate a clear mammogram/ultrasound after a breast lumo was found. Do I regret it? Yes and no. I regret that I was dumb enough to go back to this particular place when I should have known better, but I don't regret the relief and celebration I had.

I haven't been in a situation where I HAD to eat gluten and I hope I never am. I have also never gone through gluten withdrawal as I don't think my body ever wanted the stuff to begin with. :P:ph34r:

chocolatelover Contributor

Please forgive my ignorance, but what is CC? It's been mentioned several times in this thread (which, by the way, has been a fascinating read).

So what does it mean that I am feeling nothing but great after having been gluten free for--woo hoo--6 whole days (that was a sarcastic woo hoo, by the way)? It took a couple of days, but now that I'm off dairy as well, I feel great. I am having none of my former symptoms to speak of, my energy is endless, my mood almost euphoric...and none of the withdrawl symptoms either. Does it mean anything at all? Does it mean that they will soon come and I just haven't been off gluten long enough to experience any of them? :unsure:

Mtndog Collaborator
Please forgive my ignorance, but what is CC? It's been mentioned several times in this thread (which, by the way, has been a fascinating read).

So what does it mean that I am feeling nothing but great after having been gluten free for--woo hoo--6 whole days (that was a sarcastic woo hoo, by the way)? It took a couple of days, but now that I'm off dairy as well, I feel great. I am having none of my former symptoms to speak of, my energy is endless, my mood almost euphoric...and none of the withdrawl symptoms either. Does it mean anything at all? Does it mean that they will soon come and I just haven't been off gluten long enough to experience any of them? :unsure:

OOps- sorry. Glad you piped up and asked. CC means cross-contamination as in what you're eating is actually gluten-free but somewhere in the process of being prepared it came in contact with gluten. For example, I loved Blue Diamond Nut Thins but I got sick from them because they are processed on the same lines as products containing gluten. Everyone has a different threshold- I'm super-sensitive.

I experienced NO withdrawal symptoms at all. Maybe your body is just PSYCHED to be rid of the stuff! I had gradually weeded stuff out before officially going gluten free. Used to love pancakes, beer, etc. But stopped ordering pancakes because they felt like they sat in my stomach for days. Switched alcohol because 2 beers started meaning a 4 day hangover. My body couldn't wait to get rid of it. I had no withdrawal at all.

I'm GLAD you're feeling great! :D

blueeyedmanda Community Regular

I know it was all emotional for me, very down because I couldn't eat like everyone else and at first I had no ambition to try anything new or cook. We fell into a fast food rut in those days. We are so much more into healthy eating now a days and I am no longer depressing over gluten!!!! It was a long fought battle let me tell you!

gfp Enthusiast
Please forgive my ignorance, but what is CC? It's been mentioned several times in this thread (which, by the way, has been a fascinating read).

So what does it mean that I am feeling nothing but great after having been gluten free for--woo hoo--6 whole days (that was a sarcastic woo hoo, by the way)? It took a couple of days, but now that I'm off dairy as well, I feel great. I am having none of my former symptoms to speak of, my energy is endless, my mood almost euphoric...and none of the withdrawl symptoms either. Does it mean anything at all? Does it mean that they will soon come and I just haven't been off gluten long enough to experience any of them? :unsure:

Oops we switch to a secret language when n00bies are around :D We can't say its really secret ....

Oh go-on then Cross Contamination.... its a short couple of words but encompasses 90% of the risks when you are trying as hard as you can....(take me with a pinch of salt on this, I get all emotional over this subject)

Anyway, its really important but we covered it lots, indeed so much you'll probably only get half a response now :D try doing a quick search... if I try and tell you now, (at 4AM after a night out) I'm sure to forget some sources....I actually have a webpage just on this subject but board rules prevent me posting it... so .....

You can start it in the field where a few wheat stalks are present in a corn field because they were grown the year before...

You can say the corn was contiminated in the hoppers used to store it or the bulk transport contracted to deliver it.

Then it can be CC'd in the grinding and milling process or CC'd in the mill then CC'd in the next transport to where its made into tortilla...

I call all these up to here "upstream CC" but that's just me so forget it, it'll never catch on :D but anyway what I call "downstream CC" (nah that'll never catch on either.).. is once the initial prduct is made (in this case a tortilla) after this the tortilla might be handled by a chef who just touched flour = CC , or dropped onto a surface with a trace of flour CC or the filling could have contacted gluten..or it might be oven cooked and touch a wheat one or deepfried (mmmm) as a chimichanga in oil that has contained gluten.... then finally the plate or knife and fork

As you can see we use it like "thing" is used .... when we don't have a special name for getting glutened we say CC, I say it lots ....

but it doesn't mean anything specific ... anyway, its usually a verb but very flexible.... where cross is used as an auxilary verb and contamination as the ...???? ... did I just write that? Wow I should sleep .. but if you have time try searching for CC or cross contamination .... its a big subject and really important.

Canadian Karen Community Regular

:lol::lol:

Steve, you need to go to bed!!!

G'Night....

chocolatelover Contributor

Ok, had no idea how totally loaded those 2 little letters were. Crap. So how do you manage not to get CC'd when you are the only one in the family with gluten issues and you still have to cook for the rest of the family??

PS--thanks for letting me in on the secret :lol:

gfp Enthusiast
Ok, had no idea how totally loaded those 2 little letters were. Crap. So how do you manage not to get CC'd when you are the only one in the family with gluten issues and you still have to cook for the rest of the family??

PS--thanks for letting me in on the secret :lol:

The simplest, safest and best is not to cook anything with gluten it it. Many of us find it easiest (for me its just me and my girlfriend usually and I cook 90% of the time anyway, not just the gluten-free thing) to have no gluten in the kitchen at all. On the very rare occasision my girlfreind gets cookies etc. (presents etc.) they are kept ina plastic ziplock inside a special tupperware container that has a big skull and crossbones (well its meant to be I don't draw to good) ...

Really big things to watch are toasters, these are almost a dead cert CC .. but accidentally using the same utensils etc.

When I was first diagnosed I used to try and manage in a mixed kitchen but I had so many accidents and even if you get glutened elsewhere you can never say so I went 100% gluten-free. Seperate conserves and anything that gets a spoon dipped in are really a good start.

Many people have done like I did, some have seperate areas ... etc. its all down to you...

Getting active support of your family is really important in this. When you adapt what you cook and what ingredients you start from its really not so easy to tell its gluten free. Obviously pasta etc. you are using gluten-free pasta but many meals are pretty much gluten free except for things you add that have perfectly good alternatives ... and the more back to basics you go the easier it is and the safer.

darlindeb25 Collaborator

Chocolatelover, you have to use special measures to be sure and the family needs to help. They need to know which foods they must be careful with. In the beginning, I still had 2 kids at home and a 3rd staying with us for a time. I labeled things, like a dish of margarine would have "mom" written on it. They knew they could use it, but they could never double dip in it. When I cooked things like soup, it never contained anything with gluten any longer. You have to remember to always clean a surface before you use it, simple things we do not normally think of. In time, it becomes 2nd nature.

Jerry's original question was about withdrawal symptoms. Withdrawal really has nothing to do with being glutened, after you have been gluten-free for some time. Withdrawal is our immediate reaction to going gluten free in the beginning. Just as an alcoholic needs a drink, some of us feel we need gluten. It's a feeling we have to fight and withdrawal can cause several reactions. We are addicted to gluten and any time you give up an addiction, you will have withdrawal of some sort. It has been almost 6 years for me now and I can't recall anything rough happening to me. I had been so sick for so long, that I would do anything to feel better. I was taking 40mg of paxil at the time and I do recall I still had panic, so maybe added panic was my withdrawal. From the minute I gave up gluten, I never intentionally ate it again. I had been quite ill for 25 yrs by the time I went gluten free, so it was such a relief to feel human again. I was in gluten-free heaven at the time.

Now in a response to gfp (Steve) I thought I could manage 3 days without eating and I was wrong.... but what else should I have done?I feel just as you, I feel you are attacking me for my feelings. You could have prepared for the trip before leaving. You could have had food with you that we can eat. Foreign countries know more about gluten free than the US does, we all know that. The food you needed was available for you to find, it may have taken a little more effort, yet for me, it's worth the effort! You could have taken fruit with you, chips, ricecakes, things we can have. I guess it is determined by how committed you are--I absolutely would not eat gluten, that is my commitment--I would live on water for 3 days first, which can be done. Gluten is arsenic to a celiac and I was poisoned for way too many years to ever intentionally eat it again.

At a support meeting Tuesday night, a lady was telling me about flying to Florida for a visit. She took her food with her. She used frozen bags of spinach to keep her food cold, the person checking her bags was very impressed. She never eats the spinach, just keeps refreezing it for travel. Smart idea, I think.

Canadian Karen Community Regular

Although I can see your point and your advice to bring your own food is a good one, I am trying to visualize myself going on a three week vacation. The amount of clothes alone would weigh me down, then on top of that three weeks worth of food consumption? I would have 20 suitcases! Also, fruit would not be an option for a three week vacation, as it would spoil. Fruit would have to be bought wherever I was at the time....

Your suggestion makes sense for a short term vacation, but three weeks worth of food is not possible....

Karen

gfp Enthusiast
Jerry's original question was about withdrawal symptoms. Withdrawal really has nothing to do with being glutened, after you have been gluten-free for some time. Withdrawal is our immediate reaction to going gluten free in the beginning. Just as an alcoholic needs a drink, some of us feel we need gluten.
I think its both.... there is however a mechanism which is scientificly known which I mentioned in my first post on the subject and this is a real withdrawal where the body's mood regulation mchanism is damaged by the gluten.

Both gluten and casein are classed as exorphins (you can just google exorphin) which means they are external products that mimic the bodies own endorphins. The problem being that the gluten although it attaches and blocks the receptor doesn't fit properly and can damage the endorphin receptor. When the brain detects it needs a pick-me-up it releases more endorphins but when the receptors are damaged they are not taken up and the brain signals for more. Its very much like GERD where stomach acid is being continually produced except its releasing endorphins not bile. the result is that these then start floating around the body and cause a state very similar to opiates. Because we can't control our mood properly we get anxious as the adrenal receptors are functioning normally but their counter balance is not.

Now in a response to gfp (Steve) I thought I could manage 3 days without eating and I was wrong.... but what else should I have done?I feel just as you, I feel you are attacking me for my feelings. You could have prepared for the trip before leaving. You could have had food with you that we can eat. Foreign countries know more about gluten free than the US does, we all know that. The food you needed was available for you to find, it may have taken a little more effort, yet for me, it's worth the effort! You could have taken fruit with you, chips, ricecakes, things we can have. I guess it is determined by how committed you are--I absolutely would not eat gluten, that is my commitment--I would live on water for 3 days first, which can be done. Gluten is arsenic to a celiac and I was poisoned for way too many years to ever intentionally eat it again.

When I planned the trip I had planned for food, between planning the trip and going the regulations changed, no food, no drinks except water in 30ml containers or less to be taken on flights. My intention was to do the 3 days without anything but water and to be able to buy some fruit etc in Vietnam on the 24 hr stopover. The alternative was to try and get a gluten-free meal on the plane which I wouldn't trust anyway.

Foreign countries know more about gluten free than the US does, we all know that.

I'm sorry but that is hardly worth answering. I doubt you have ever been to Vietnam nor most of the 100+ countries I have visited and worked in.

darlindeb25 Collaborator

Your suggestion makes sense for a short term vacation, but three weeks worth of food is not possible....I was not suggesting anyone take enough food for 3 weeks, he was talking about 3 days. He said he did fine until the 3 day trip, which I may add, he did not plan for in any way. A celiac should never count on gluten-free on a flight--when planning the 3 day trip, the food should have been purchased before going. Common sense goes a long way!!!! I am 51 yrs old and raised 5 kids who never ever starved or ate spoiled food. I am smart enough to know that you could not pack enough food for 3 weeks--give me some credit.

I'm sorry but that is hardly worth answering. I doubt you have ever been to Vietnam nor most of the 100+ countries I have visited and worked in.I truly doubt you have had to deal with everything I have dealt with in my life either. I am not lucky enough to have the money to travel--I do not even have the money to travel the US, which I find has enough interesting places to see. None the less, traveling or not--common sense rules and I live with common sense as my guide.

gfp Enthusiast

Are you actually reading my posts???

He said he did fine until the 3 day trip, which I may add, he did not plan for in any way.
When I planned the trip I had planned for food, between planning the trip and going the regulations changed, no food, no drinks except water in 30ml containers or less to be taken on flights.

If you actually read my posts their was no 3 day trip it was a layover on route to Australia. I'm starting to wonder if its worth correcting this at all and that you are not simply being deliberately contrary. Perhaps I should just leave it to others who have read my posts ? I really don't want you to be the first person I ever add to my ignore list, I don't really like the idea of ignore lists but its getting increasingly tempting just for some peace and not being quoted out of context.

darlindeb25 Collaborator

especially when I've for instance been on vacation in Italy and managed not to get glutened for 2 1/2 weeks and thought screw it, Ive only 3 days left and I can eat real pizza, pasta and drink real beer..... my justificaqtion is I'm goiung to be ill for 2-6 weeks (depending on severity) so x weeks or x weeks+3 days ??? From your first post.

its making the most of the end of my vacation... I dreads to admit but faced with 3 days of not eating on route to Australia I willingly ate gluten too.

Are you actually writing your posts, you said the "3 days" were when you decided to cheat--I didn't make it up, you did--go read your own words. I read very well and I understand what I read and you don't have to block me--I will not waste anymore of my precious time on someone who has no idea what he is writing!

gfp Enthusiast
especially when I've for instance been on vacation in Italy and managed not to get glutened for 2 1/2 weeks and thought screw it, Ive only 3 days left and I can eat real pizza, pasta and drink real beer..... my justificaqtion is I'm goiung to be ill for 2-6 weeks (depending on severity) so x weeks or x weeks+3 days ??? From your first post.

its making the most of the end of my vacation... I dreads to admit but faced with 3 days of not eating on route to Australia I willingly ate gluten too.

Are you actually writing your posts, you said the "3 days" were when you decided to cheat--I didn't make it up, you did--go read your own words. I read very well and I understand what I read and you don't have to block me--I will not waste anymore of my precious time on someone who has no idea what he is writing!

Just stick to the truth and stop trying to bend it.. I didn't say that in my first post on the subject or this thread what I said was

Open Original Shared Link

What I have found when accidentally glutened is if I keep it "topped up" I don't actually crash... immediately.
followed by

I

did not choose to be glutened, I took every possible precaution not to get glutened and probably a lot more precautions than most people here take on a daily basis.

I suspect I know where it happened but I couldn't say for sure... I react to the smallest amount of CC violently..

It could have been a salad in a tratoria but it could equally have been a gluten-free pizza that somehow touched a non gluten-free one while being carried....or the bottom of a plate which had touched some non gluten-free flour????

In all these cases it has been apprent to everyone but you that this took place AFTER I WAS ACCIDENTALLY GLUTENED....

The ONLY exception was on the flight through Vietnam on route to Australia. A flight I had planned meticulously only to have the rules change on me over what I could take onto the plane or not... yet again you claim I made no plans???

It basically seems you are either obsessed with picking on me or have a problem relating the posts in order, I truly don't know which.

People often skip through posts, thats pretty normal but if you are going to launch a vitereolic attack on someone at least have the courtousy to quote the posts in order and not go out of your way to quote out of context and try and put my words into a random order.

If you somehow missed the

What I have found when accidentally glutened is if I keep it "topped up" I don't actually crash... immediately.
and the fact that everything in Italy ws based on this then go back and read it... if you are just chosing to ignore it then please get another hobby apart from misquoting my words.
Canadian Karen Community Regular

I also have a concern regarding people who have recently come here looking for answers and share their ideas.

I do not want to create an atmosphere where people will look at Celiac.com as a bunch of "fanatical celiacs", that if you post anything other than the "tow the line - we would rather stick toothpicks in our eyeballs while walking through fire than touch gluten" stance, you will get jumped on. In particular, I am concerned for those who feel the need, for whatever their reason, to do a gluten challenge in order to get definitive answers..... are they going to feel comfortable enough to continue to post, or are they going to feel like "Well, if I tell those folks over at Celiac.com that I am going to intentionally ingest gluten, they will freak out".......

Karen

darlindeb25 Collaborator

It's sad Karen, but many people are afraid to post in this forum and not because of me. I have lots of people emailing me, asking me questions that they are afraid to ask in the forum. They are afraid of being attacked, they are afraid of how they have seen other's treated. They email me because they can tell the type of person I am by my realistic posts. There is a group here that you must agree with or you are driven away, just as Srokie felt. I am a member of many forums and never find the catty behavior in any of them like I find here. I stay here to help those who need it and I try to ignore behavior of others unless I feel it is detrimental, then I voice my opinion.

Lisa Mentor

Deb:

I have sat back and watched this whole thread from the beginning to the end.

Everyone on this board is here for the purpose to share pertinent information, asking concerning questions and seeking support due to Celiac and it's related issues.

Your general statement that the forum is "catty", does a grave disservice to the good work done here.

When it gets down to it, your argument was between you and Steve. In the end, it is nothing but a match between wills and serves no support purpose what-so-ever on a public forum.

Why don't you both walk away and place that energy on being helpful to those that ask.

Lisa

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,300
    • Most Online (within 30 mins)
      7,748

    Liss28
    Newest Member
    Liss28
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
×
×
  • Create New...