Jump to content
  • 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

Ursa Major Collaborator

First of all, back to the original topic. No, I didn't have any withdrawal symptoms when eliminating gluten. I started feeling much better by the next day after figuring it out and going off gluten.

To what gfp said:

Steve, I had to read your original post twice to realize that you meant you purposely ate gluten for 2 - 3 days AFTER you got glutened anyway. Seeing that you get just as ill from one crumb as from pigging out, I can see why you would do that. And you did say that you don't recommend it.

For some people, amount does matter, apparently. They get much sicker from larger amounts, and not as bad from a crumb. So, they obviously shouldn't think, 'oh well, I will be sick anyway, might as well make it count and enjoy myself'.

For myself, I am not sure. I am not safe in this house, there are always crumbs everywhere. People will eat bread at the computer, even though I've begged them not to. I have cleaned the keyboard a few times before using it. But I would have to do that several times a day, and I simply don't have the energy to spare for stuff like that, and have to take my chances. I am positive that I get glutened without knowing it.

But I react to so many things, that it isn't possible to know what made me sick this time. I don't know what it feels like to be well. How do I measure wellness then? Some days I feel less sick than others. On days I am feeling a little worse, who is to say why?

As to 'staying on topic' and trying to enforce that, I am wondering, 'why'? If you have a thread that has more than one page, it is almost inevitable that you eventually wander off the topic and get onto other things.

Threads are like conversations. Would anybody try to force a group of people having a conversation to stay on one topic only? That would be ridiculous.

I feel that unless the person who started the topic is offended by it turning to other subjects, let it be. I don't feel that my job as moderator is to go to all the threads and trying to make them stay on one specific topic.

Unfortunately, I also get many PMs from people who feel more comfortable asking me questions in private, than risking being ridiculed in public (and I am NOT saying not to send me PMs here, I am always glad to be able to answer questions).

Gfp can be longwinded. What he says may not always be easy to understand. But he always has some good points. And he never says to copy what he does, he makes it very clear that it is his personal opinion, and his personal experiences. Why jump down his throat for that?

And analogies can have value in getting a point across. When he talks about his skiing and mountainbiking experiences, he uses those to drive home a point, and I find it quite effective myself. In that sense, those analogies are quite relevant.

It seems we have a clash of personalities here. Let it rest, and don't start a war. And most of all, please don't take offense when there is disagreement, just agree to disagree peacefully.


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



Celiac.com Sponsor (A8-M):



  • Replies 68
  • Created
  • Last Reply
darlindeb25 Collaborator

I'm sorry Lisa, I wasn't referring to everyone being catty, just the few who are. My mother has always taught us, "If you have nothing good to say, then say nothing at all!"

I will not mention another word about Steve, I never lied and was not mistaken--the proof is in his posts.

Lisa Mentor
I'm sorry Lisa, I wasn't referring to everyone being catty, just the few who are. My mother has always taught us, "If you have nothing good to say, then say nothing at all!"

I will not mention another word about Steve, I never lied and was not mistaken--the proof is in his posts.

I knew what you meant. But this is a dead dog and I would say the same thing to Steve if he was awake across the pond :) Let's move on. We have other issue to tend to.

Lisa

darlindeb25 Collaborator

But I react to so many things, that it isn't possible to know what made me sick this time. I don't know what it feels like to be well. How do I measure wellness then? Some days I feel less sick than others. On days I am feeling a little worse, who is to say why?

Exactly how I feel Ursa! I never feel good, I have days when I do not feel as bad, but never good days. I too have so many other intolerance's to deal with. I do know gluten is not a problem for me in my home. Sometimes at work, I can't be sure. I do often find one of the others eating cookies, pastries, or other gluten filled items over my desk, over my invoices, etc. The day I found the crumbs in my invoices, I almost threw all their junk food in the trash. My boss's wife also works in our office and when she hears one of them have eaten at my desk again, she freaks and tries to sterilize the area--you gotta love her, she takes such good care of me.

I have a headache every day, which the doctor says is due to the neuropathy in my neck and shoulders. I'm thankful I found out about celiac disease, at least going gluten-free has slowed the progression of my neuropathy. I just wish the doctors had figured it out years ago.

Ursa Major Collaborator
Sometimes at work, I can't be sure. I do often find one of the others eating cookies, pastries, or other gluten filled items over my desk, over my invoices, etc. The day I found the crumbs in my invoices, I almost threw all their junk food in the trash. My boss's wife also works in our office and when she hears one of them have eaten at my desk again, she freaks and tries to sterilize the area--you gotta love her, she takes such good care of me.

For your coworkers to eat gluteny things at your desk is awfully inconsiderate. If I was you, I would make a sign for my desk, saying "Gluten-free area!" If it is in a spot that can't be ignored then nobody will have the excuse that they forgot. I am glad that at least one person in your office takes your celiac disease seriously.

Canadian Karen Community Regular
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 agree with you 100% that people are afraid to post due to the way others are treated. As I recall, that's exactly why I 100% supported Srokie, exactly the same way I am supporting gfp, because I believe that people should be free to post their experiences without fear of repercussions. Unfortunately, not all follow that belief.

Karen

Carriefaith Enthusiast
Any experience...do you feel worse for a while, before you feel better? What are your symptoms?
I experienced intense feelings of hunger for several months after going gluten-free. I could hardely concentrate sometimes. I personally think my body was having withdrawl.

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



Celiac.com Sponsor (A8-M):



itsmaryj Newbie

So is some of this withdrawal the same as going from eating carbs to carb-free? It sounds quite similar--carbs are really addictive.

Mary

Canadian Karen Community Regular

From what I can recall, my withdrawal symptoms were headaches (the kind you get when you are withdrawing your system from caffeine......) and also the heart palpitations that were tormenting me for years very briefly got worse and then magically disappeared altogether. Unfortunately, nothing else changed......

Karen

Ursa Major Collaborator
So is some of this withdrawal the same as going from eating carbs to carb-free? It sounds quite similar--carbs are really addictive.

Mary

Yes, I believe some of it is the same. Of course, a lot of carbs do contain gluten. But I know that sugar is very addictive, too.

Really, it is possible to be addicted to all kinds of things. Allergists generally believe that whatever you're addicted to is probably also what you're intolerant to.

So, for instance, alcoholics are really very intolerant to alcohol. I was addicted to tomatoes before I found out they were the cause of my constant migraines. And I was certainly addicted to my German bread. I would eat it many times a day with cheese (another intolerance). I craved it! In fact, I still do. When I see that German bread I have times I almost give in, and have to give myself a lecture on why that is a terrible idea, because I will be sick for a couple of weeks.

Guhlia Rising Star

When I went gluten free I went from gluten EVERYTHING to no gluten at all, just meat fruits and veggies. I went through horrible withdrawal. After two days I was very sick to my stomach (this was never a Celiac symptom for me), extremely angry for no reason, major headaches, shaky, unsettled feeling... I felt like I had something crawling inside of me tickling me from the inside. Not literally, but that's how aggrivated I felt. I wanted to crawl out of my own body. I was just so uncomfortable and irritable. It was horrible. I am a true believer in gluten withdrawal. My husband also went through very minor withdrawal when he went gluten free. He cheats here and there (he's only gluten free in support of me) and has no withdrawal symptoms, but he definitely doesn't handle gluten well anymore.

Jerry, are you still reading this thread?

Canadian Karen Community Regular

I remember being really emotional too. Once it was out of my system, I calmed down alot. I always was known for my very volatile, explosive temper growing up, and I am certain it was gluten related. In fact, that's one way I know for sure I have been glutened (since I have permanent D, it's hard for me to tell, except the D getting worse and more painful than it already is....), because I get very emotionally unstable, crying, anger, etc.

Rachel--24 Collaborator
When I went gluten free I went from gluten EVERYTHING to no gluten at all, just meat fruits and veggies. I went through horrible withdrawal.

This is exactly what I experienced. I went from a diet of junk and processed foods to a "clean" diet of meat and veggies. I was very sick....I actually thought I was dying....it lasted about a week and then I felt really good for the first time in 2 years.

I know part of it was withdrawl but alot of it was my body detoxing. This is ineviatble when you make a major change in your diet and what you're putting into your body. The detox will make you feel worse before you feel better.

If you go from a regular diet to a diet that is gluten-free but still full of processed foods...you might not feel the "detox" very strongly. Going immediatly to clean foods will have a more dramatic affect of feeling worse and then better.

Its the same when a person is quitting smoking. They will go through the withdrawl part but also they might start coughing up stuff and feeling worse as some of the toxins start coming out. Its no different when we stop putting alot of chemicals and other bad stuff into our bodies by changing our diets. We will definately feel the affects as our body starts eliminating some of the toxins we've consumed on a daily basis for many years.

darlindeb25 Collaborator

I always was known for my very volatile, explosive temper growing up, and I am certain it was gluten related.

Weird Karen, me too! From my childhood, I remember a person asking me if I ever smile. It's funny, have you ever noticed how another person says something that so relates to your life. I often look at my wedding pictures, I was only 17 and I look so sad. I do not remember happy times in that marriage, other than the birth of my children. That will be 34 yrs ago this coming July, I have been divorced for 8 1/2 yrs now. Years of unhappiness, heartbreak, and illness. Finally I found out about celiac disease and went gluten-free, almost 6 yrs ago. My nickname became Smilie. Friends now can not imagine what my life was like then. My firends here have only known me for a little over 2 years and the person I am now is very different from the person I was then. I have become very spiritual and have found many answers. I now realize that celiac disease changed my life in more ways than one.

Mtndog Collaborator
As to 'staying on topic' and trying to enforce that, I am wondering, 'why'? If you have a thread that has more than one page, it is almost inevitable that you eventually wander off the topic and get onto other things.

Threads are like conversations. Would anybody try to force a group of people having a conversation to stay on one topic only? That would be ridiculous.

I feel that unless the person who started the topic is offended by it turning to other subjects, let it be. I don't feel that my job as moderator is to go to all the threads and trying to make them stay on one specific topic.

It seems we have a clash of personalities here. Let it rest, and don't start a war. And most of all, please don't take offense when there is disagreement, just agree to disagree peacefully.

Agreed. When I posted as a moderator asking people to stay on topic it was my polite way of saying "Drop the clash of wills". Perhaps I should havae just said that rather than skirt the issue politely.

And yes, Jerry was put off by the posts in this thread.

Canadian Karen Community Regular
I always was known for my very volatile, explosive temper growing up, and I am certain it was gluten related.

Weird Karen, me too! From my childhood, I remember a person asking me if I ever smile. It's funny, have you ever noticed how another person says something that so relates to your life. I often look at my wedding pictures, I was only 17 and I look so sad.

You just described me to a tee! As a child, I was very withdrawn, quiet, sad and "broody" as my Mom would say :P . I also felt very insecure as a child with no self-esteem whatsoever. I used to be terrified to raise my hand in class for fear of being ridiculed in some way.... :( But then, something little would set me off, and I would just simply explode!

Another really weird thing that happened when I was a child was I used to "black out". I would remember doing something, the next thing I knew, I was on the floor with people looking over me all concerned, as I was out for a few minutes.... They did the testing that stuck things in your head but never found anything.... Looking back now, I realize it was all gluten related....

Karen

Kaycee Collaborator
You just described me to a tee! As a child, I was very withdrawn, quiet, sad and "broody" as my Mom would say :P . I also felt very insecure as a child with no self-esteem whatsoever. I used to be terrified to raise my hand in class for fear of being ridiculed in some way.... :( But then, something little would set me off, and I would just simply explode!

Karen

Karen, I could say you described me to a tee!

Cathy

darlindeb25 Collaborator

I used to be terrified to raise my hand in class for fear of being ridiculed in some way.... But then, something little would set me off, and I would just simply explode!

Yup, this too I remember. The worst time was on a school bus when my best friend was angry at me for something and she said something that set me off, I threw a book at her. I still feel bad about that and I was probably 10. I hold so much inside and I realize, that part of me has not changed. No, that isn't true, now I am even worse about holding things inside. Kev often tells me to go to the beach to a secluded area and scream, he tells me I need to release some of the stress that I hold inside and no one would hear me over the crashing of the waves.

It's amazing what this thing called celiac has done to most of us. Sometimes I think the emotional ramifications are even worse than the physical. I have said this before about my panic attacks, I've always worried about others and how I may ruin their day, which causes me to panic and when I panic, I worry more about upsetting others, so then I panic more. A very vicious cycle! I'm guessing I have taught myself to hold even more inside so as not to upset others. People here think I am a remarkably calm person and feel I have done so well handling all the problems in my life. Little do they know huh? ;)

Ursa Major Collaborator
Agreed. When I posted as a moderator asking people to stay on topic it was my polite way of saying "Drop the clash of wills". Perhaps I should havae just said that rather than skirt the issue politely.

And yes, Jerry was put off by the posts in this thread.

Okay, I can understand now what you were trying to do. It didn't work, because it is better when you say what you mean so people understand. As it was, it came through as irritating (at least to me, I never get hidden meanings).

So, Jerry, are you still reading? If what people do in your thread bothers you, SPEAK UP and let them know!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

    2. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    5. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.