Gluten Withdrawal: How Do You Function?

[laura1959]

I was gluten free for five days and I thought I was going to die.  I was sleepy (more than usual), brain fogged (more than usual), lethargic and miserable.  I went back to eating gluten because I needed to be tested, but am faced with having to go off it again.  

 

I work full time and during those five days I could barely pull myself out of bed.  How does anyone function during gluten withdrawal?  

[GottaSki]

Eat as simply as possible...meat, fish, veggies, fruit, rice and potato and drink lots of water every day.

Hang in there and let us know how it goes

[dani nero]

Probiotics, vitamins, plenty of water, and stick to foods made from scratch which include healthy fats. 

 

Let others know what you're going through to have some support, that always helps. 

[ravenwoodglass]

If you have sick days or vacation time you can take you might consider doing so. If not take the advice above and try to rest as much as you can while going through the withdrawl. Remind yourself often that it is a temporary thing and that it will end. Be easy on yourself and let the dust bunnies wait or if you have family try to get them to pitch in on household chores during that time.

Withdrawl is tough but it does end. The one good thing about withdrawl is that it is a clear sign that you need to be gluten free whether testing shows positive or not.

[laura1959]

If you have sick days or vacation time you can take you might consider doing so. If not take the advice above and try to rest as much as you can while going through the withdrawl. Remind yourself often that it is a temporary thing and that it will end. Be easy on yourself and let the dust bunnies wait or if you have family try to get them to pitch in on household chores during that time.

Withdrawl is tough but it does end. The one good thing about withdrawl is that it is a clear sign that you need to be gluten free whether testing shows positive or not.

 

I had been wondering if the gluten withdrawal had any significane in terms of being an indicator of likely disease.  Are you saying that non-celiacs don't go through it?

[Gemini]

I never went through any withdrawal but I was very sick at diagnosis so I couldn't have gotten any worse than I was.  But from what you describe, you really should have your thyroid tested because not being able to get out of bed screams of a hypo thyroid problem.  It is common to Celiac and I have both myself.  Stopping gluten can sometimes make other problems come to the forefront and that is what I experienced.  You should feel somewhat better but not feel worse so maybe you have another problem on top of the gluten problem and you are feeling that more now?  My biggest symptom of a thyroid issue was not being able to get out of bed.  It took major effort for me to get up and go to work. 

 

If they test you, make sure they do a full thyroid panel and not just the TSH. 

[laura1959]

I never went through any withdrawal but I was very sick at diagnosis so I couldn't have gotten any worse than I was.  But from what you describe, you really should have your thyroid tested because not being able to get out of bed screams of a hypo thyroid problem.  It is common to Celiac and I have both myself.  Stopping gluten can sometimes make other problems come to the forefront and that is what I experienced.  You should feel somewhat better but not feel worse so maybe you have another problem on top of the gluten problem and you are feeling that more now?  My biggest symptom of a thyroid issue was not being able to get out of bed.  It took major effort for me to get up and go to work. 

 

If they test you, make sure they do a full thyroid panel and not just the TSH. 

 

Thanks.  I had that testing done last week, as well as parathyroid testing.  Those are all good, so Celiac is the diagnosis of exclusion at this point.  I have had my thyroid tested several times in the past as it's always the first thing the PCPs go to when you complain of fatigue.  Lately I just don't complain of fatigue anymore because, you know, it's kind of pointless.  If treating Celiac manages to fix the fatigue, I will be so happy.  So sorry that you experienced this after you stopped the gluten. I hope you are feeling much better now that they have found this.

[notme]

after years of complaining/feeling sick/trudging onward, half-dead, when i finally got diagnosed (O MY GOSH this is REAL) i 'allowed' myself to rest and take it easy, starting with the withdrawals.  i babied myself:  eat something, drink lots of fluids, then back to bed.  when there was "nothing" wrong with me, i didn't allow myself to be *sick* - maybe i got a little convinced after all the doctors/tests that resulted in no diagnosis except the dreaded IBS that i should suck it up and stop being such a wuss.  does that make any sense?  it's time to take care of YOU i guess is what i'm trying to say.  good luck and hope every day gets better than the last!

[1desperateladysaved]

Being a mother with small ones in tow, I needed to muddle through somehow.  I had some help from my older children and managed a nap several days just after lunch.  I only did what I had to do, but this had been quite usual for  a number of years.  Stay home when you can and rest.  Don't expect too much of yourself for a time.  Put in some time on the forum and ask questions.

 

Get Better,  ***

D

[laura1959]

after years of complaining/feeling sick/trudging onward, half-dead, when i finally got diagnosed (O MY GOSH this is REAL) i 'allowed' myself to rest and take it easy, starting with the withdrawals.  i babied myself:  eat something, drink lots of fluids, then back to bed.  when there was "nothing" wrong with me, i didn't allow myself to be *sick* - maybe i got a little convinced after all the doctors/tests that resulted in no diagnosis except the dreaded IBS that i should suck it up and stop being such a wuss.  does that make any sense?  it's time to take care of YOU i guess is what i'm trying to say.  good luck and hope every day gets better than the last!

 

It makes sense; I'm just not sure I have the luxury of being able to take that time in the near future.  I work for a small department at a University with a lean administrative staff.  My immediate supervisor is the department manager, and she will be on an extended vacation soon, and I can't afford to have my head in a fog while she is away.  We are also kicking off a new initiative that I have been assigned to manage (until they hire someone to permanently run it at three salary levels above mine, but that's another story).  That initiative is on a tight timetable and needs to be planned now.  Waiting until after that is under control might happen, but there will always be something new that needs to be handled.  I'm not sure I can go to the doctor and get a medical dispensation for gluten withdrawal, but that's what it would take for me to take time off right now.  

 

I guess if things get really bad I could always back off the diet a bit and wait until she returns, but it's like trading one set of symptoms for another and indefinitely putting off feeling as good as I can.  A little bit frustrating!  Hopefully I can take some time to baby myself 

[laura1959]

Being a mother with small ones in tow, I needed to muddle through somehow.  I had some help from my older children and managed a nap several days just after lunch.  I only did what I had to do, but this had been quite usual for  a number of years.  Stay home when you can and rest.  Don't expect too much of yourself for a time.  Put in some time on the forum and ask questions.

 

Get Better,  ***

D

 

Thank you!  And thanks to everyone who has offered advice.  

 

I have another thought.  Has anyone tried slowly withdrawing gluten?  Like tapering off of it, as you would an addictive drug?  Any chance that would be helpful?  

[Gemini]

Thanks.  I had that testing done last week, as well as parathyroid testing.  Those are all good, so Celiac is the diagnosis of exclusion at this point.  I have had my thyroid tested several times in the past as it's always the first thing the PCPs go to when you complain of fatigue.  Lately I just don't complain of fatigue anymore because, you know, it's kind of pointless.  If treating Celiac manages to fix the fatigue, I will be so happy.  So sorry that you experienced this after you stopped the gluten. I hope you are feeling much better now that they have found this.

Laura......if you feel comfortable doing so, could you post your thyroid testing results? Doctors always just tell patients that their thyroid is fine but they may be going by old ranges that are out of date.  It isn't all about the numbers, either.

You have to treat by symptoms, on top of taking blood work for the numbers.  I just had my results of my maintenance thyroid testing yesterday and if most endocrinologists saw my numbers, they would have a fit.  Yet...at these numbers, I feel great.  It's what works for me and many docs just use the same "normal" for everyone.  The doctor I see for this is pleased with the results and yes, she is a real MD but treats thyroid disease the old way.....including how I feel and what my sympotms are or aren't.  Just thought I'd throw that out there......

 

Fatigue is also huge with Celiac and it can take awhile for the fatigue to go away.  I know the feeling about your job too......I have a good job with responsibilities and was loathe to take more than 1 week off.  I wobbled into work but have understanding co-workers and I have been here awhile.  Thankfully, it's a sit down job and I think that doing things for so long made me work on autopilot for awhile and get through the day.  Sometimes going to work keeps your mind occupied on better things than how sick you are.  Not everyone can do this but it's worth trying and if you feel sick or unable to complete your work, then you can think about a short hiatus.  Hang in there because it does get a lot better down the road and you'll be glad you stuck with it.  celiac disease takes some time to feel great again but you will get there like the rest of us did!

[Gemini]

Thank you!  And thanks to everyone who has offered advice.  

 

I have another thought.  Has anyone tried slowly withdrawing gluten?  Like tapering off of it, as you would an addictive drug?  Any chance that would be helpful?  

Not a good idea because even tiny amounts will aggravate your immune system so you will never calm it down until you stop gluten entirely....100%.  I know that is not what you wanted to hear. There is no easy way around this problem, in the beginning. 

[laura1959]

Not a good idea because even tiny amounts will aggravate your immune system so you will never calm it down until you stop gluten entirely....100%.  I know that is not what you wanted to hear. There is no easy way around this problem, in the beginning. 

 

I know that it would be pushing back recovery from Celiac by however long the weaning process takes, but I've apparently been pushing that back for 54 years already!  The question I'm posing is whether one can successfully wean to a gluten-free diet and avoid the lion's share of the gluten withdrawal symptoms prior to becoming entirely gluten-free.  Has anyone tried this?  If so, did it work and would you do it that way again?    

 

**Edited to add** My understanding is that gluten withdrawal is similar to a drug withdrawal and that the symptoms of gluten withdrawal aren't celiac symptoms.  Is that not correct?  

[laura1959]

I don't have the numbers on the thyroid testing; the thyroid tests were run by the endocrinologist on 7/15 and I was told over the phone that everything is fine with all of the testing they did.  They did do several tests in the thyroid series, not just the basic ones I've had in the past.  My doctor's office did not yet have those results in their file but once everything is in I am planning to ask them for a copy of my entire file.  I'll let you know what more I learn about the thyroid results once I do that.  

[Gemini]

I know that it would be pushing back recovery from Celiac by however long the weaning process takes, but I've apparently been pushing that back for 54 years already!  The question I'm posing is whether one can successfully wean to a gluten-free diet and avoid the lion's share of the gluten withdrawal symptoms prior to becoming entirely gluten-free.  Has anyone tried this?  If so, did it work and would you do it that way again?    

 

**Edited to add** My understanding is that gluten withdrawal is similar to a drug withdrawal and that the symptoms of gluten withdrawal aren't celiac symptoms.  Is that not correct?  

I was born in 1959 also, Laura...it was a good year! 

 

To answer your question.....there is no methadone for making symptoms any easier in transitioning to a gluten-free diet.  That would be nice, wouldn't it?  I am not sure there is actually a withdrawal, either. What I think is that you will not be entirely gluten-free once you stop eating gluten...even 100%. And once you stop, your symptoms don't disappear overnight.  Many people, including myself, had symptoms for awhile after going 100% gluten-free, because you are sick and your body is damaged and needs healing.  It's overall damage and you probably have vitamin deficiencies and other problems, all caused by eating gluten.  When I went gluten-free, the initial and most severe symptoms like nausea and the Big D stopped within 3 days but I still felt like I had been hit by a truck.  The fatigue was bad but I had suffered from it for so long, I had no idea what normal was.  You also don't know if you have other underlying issues that go along with Celiac. It can be very hard to figure out.  All of the symptoms you listed are flaming Celiac symptoms and they can modulate for awhile until healing starts to really kick in.

 

If you need to be gluten-free, then the best thing to do is go gluten-free 100% and not eat small amounts because that will prolong your misery.  I understand what you were trying to ask but if you were diagnosed later, like many of us, and there is a lot of damage, I think that's the problem and it does not go away overnight.  This isn't like weaning off of heroin...although honestly, I never did that so can't really compare. 

 

Try and post thyroid numbers when you can.  That still could be your problem, even though they said it was all fine.  How many times had I heard that before? 

[laura1959]

I was born in 1959 also, Laura...it was a good year! 

 

To answer your question.....there is no methadone for making symptoms any easier in transitioning to a gluten-free diet.  That would be nice, wouldn't it?  I am not sure there is actually a withdrawal, either. What I think is that you will not be entirely gluten-free once you stop eating gluten...even 100%. And once you stop, your symptoms don't disappear overnight.  Many people, including myself, had symptoms for awhile after going 100% gluten-free, because you are sick and your body is damaged and needs healing.  It's overall damage and you probably have vitamin deficiencies and other problems, all caused by eating gluten.  When I went gluten-free, the initial and most severe symptoms like nausea and the Big D stopped within 3 days but I still felt like I had been hit by a truck.  The fatigue was bad but I had suffered from it for so long, I had no idea what normal was.  You also don't know if you have other underlying issues that go along with Celiac. It can be very hard to figure out.  All of the symptoms you listed are flaming Celiac symptoms and they can modulate for awhile until healing starts to really kick in.

 

If you need to be gluten-free, then the best thing to do is go gluten-free 100% and not eat small amounts because that will prolong your misery.  I understand what you were trying to ask but if you were diagnosed later, like many of us, and there is a lot of damage, I think that's the problem and it does not go away overnight.  This isn't like weaning off of heroin...although honestly, I never did that so can't really compare. 

 

Try and post thyroid numbers when you can.  That still could be your problem, even though they said it was all fine.  How many times had I heard that before? 

 

Thanks so much.  Yep, I was born in 1959 so have been up against some of these symptoms for a very long time.  

 

I had read on some other sites about gluten that it breaks down into an opioid-like substance in the intestines, and that the withdrawal is exactly like withdrawing from heroin because, essentially, that's what's happening, and that this isn't related at all to the celiac symptoms.  So I guess there is no truth to that.  

 

This is certainly an interesting, new world that I find myself in.  So much to learn and so much to wade through, separating wheat from chaff (no pun intended).  From the bottom of my heart I appreciate the guidance and knowledge shared here.  I would be lost without this place right now.  

[Salax]

Thanks so much.  Yep, I was born in 1959 so have been up against some of these symptoms for a very long time.  

 

I had read on some other sites about gluten that it breaks down into an opioid-like substance in the intestines, and that the withdrawal is exactly like withdrawing from heroin because, essentially, that's what's happening, and that this isn't related at all to the celiac symptoms.  So I guess there is no truth to that.  

 

This is certainly an interesting, new world that I find myself in.  So much to learn and so much to wade through, separating wheat from chaff (no pun intended).  From the bottom of my heart I appreciate the guidance and knowledge shared here.  I would be lost without this place right now.  

 

I have read that too that gluten and dairy are both like opiod substances in the intestines and when you start to "get off" it folks have withdraw symptoms. Now, I definitely did for both dairy and gluten, my hubby did for dairy (poor guy) and I have heard of other people that do this that are not celiac or gluten intolerant, they go off for a juice cleanse or paleo eating etc having withdraw. Doesn't mean they have the disease or they are intolerant..but maybe they body is addicted to it. It's an interesting issue for sure. I guess in my mind if a food has not only an opioid affect on people, plus there really is no nutritional value or a need to eat it - we can live without gluten and dairy, why is anyone eating it?

 

Oh I know...because it tastes freaking fantasic....LOL. Again, drug much?

[w8in4dave]

after years of complaining/feeling sick/trudging onward, half-dead, when i finally got diagnosed (O MY GOSH this is REAL) i 'allowed' myself to rest and take it easy, starting with the withdrawals.  i babied myself:  eat something, drink lots of fluids, then back to bed.  when there was "nothing" wrong with me, i didn't allow myself to be *sick* - maybe i got a little convinced after all the doctors/tests that resulted in no diagnosis except the dreaded IBS that i should suck it up and stop being such a wuss.  does that make any sense?  it's time to take care of YOU i guess is what i'm trying to say.  good luck and hope every day gets better than the last!

Exactly how I felt!! And that is exactly how I think!! I will take care of me!! No matter what happens, how ever I have to get thru this!! i will take care of me! It is a wonderful life! I can live it w/o gluten!! Hahaha sorry I just seen what you wrote and had to say something  

[laura1959]

Well, at the end of gluten free day 1, I actually feel pretty well.  I was tired when I got home, but rested a bit, and now I am okay.  I remember that last time it really hit me by day 3, so we'll just plow through this as best as we can and see how it goes.  

 

I have osteoporosis, recently diagnosed, and as I was doing my osteo-walk tonight I realized that I will not have bone regeneration unless I get the gluten out of my system entirely.  So my idea about tapering, even if it would work, probably isn't something I have the luxury to fool around with.  All these things have hit at the same time so I'm really wrapping my head around a lot at once.  It seems like getting the gluten under control will be the key to everything else that's wrong.  

[ravenwoodglass]

Good to hear your first day went pretty well. Tapering will only prolong your misery so glad to hear you have dropped that idea. You may find sublingual B12 to be helpful even if your doctor said your levels were fine. My neuro said my level at 255 was okay but he didn't know that the low level has recently been changed to 500. For me the sub B12 was helpful even before I was diagnosed with energy levels and brain fog. Also be certain to check any meds you may have been prescribed as well as supplements and OTC drugs. Labeling laws for drugs and supplements are not the same as for food so you do need to check.

I hope you continue to improve.

[Gemini]

Thanks so much.  Yep, I was born in 1959 so have been up against some of these symptoms for a very long time.  

 

I had read on some other sites about gluten that it breaks down into an opioid-like substance in the intestines, and that the withdrawal is exactly like withdrawing from heroin because, essentially, that's what's happening, and that this isn't related at all to the celiac symptoms.  So I guess there is no truth to that.  

 

This is certainly an interesting, new world that I find myself in.  So much to learn and so much to wade through, separating wheat from chaff (no pun intended).  From the bottom of my heart I appreciate the guidance and knowledge shared here.  I would be lost without this place right now.  

I am not saying it doesn't happen but I am just skeptical.  I think the medical world overthinks a lot today.  Could it just be that your mind is upset over the profound change you have to make to your diet and lifestyle so that translates into physical symptoms?  It is much the same as when people quit smoking.  You are depriving your body of what it is used to getting every day and that can have a huge emotional impact.  Especially when you really enjoyed what you were eating before....even though it was making you sick.  What ever the cause, it is real and the beginning of adopting a gluten-free diet, for some, is difficult and emotional.

 

I, too, have osteoporosis and weight train to try and reverse that.  I do not do bone meds.  I am going for my repeat bone scan in 2 weeks to see what the results of 2 years of weight training are.  I'll let you know if it is possible for us older babes to do that! Hang in there, laura!

[laura1959]

It could be.  I work with doctors who do medical research, and the advice I get about things, even from professionals who are up on the literature, is all over the map.  Since I work in research I tend to read a lot, and it may be that I'm the one overthinking, but I do understand how compounds break down through metabolic processes and these metabolic byproducts do affect your body.  This is one of the main things they look at in drug research to determine if a compound is safe to ingest.  That's why the theory made sense to me, though I don't really know if it's true for gluten at all!  

 

I am so with you on the bone meds.  I did quite a lot of my own research on those when I was diagnosed last month, and they are nasty.  Am using supplements and weight bearing exercise as well, but it's early days for me.  I really hope you will show some improvement on your next scan.  

[AlwaysLearning]

Best advice I can give you is to get tested for vitamin deficiencies if you haven't already. Going gluten free wiped out many of my odd symptoms and the allergic reactions, but the problems from chronic malabsorption still persist and seem to continue to get worse because I didn't take them all that seriously at first.

I made some mistakes early on in my gluten free, using premade gluten-free products to help me feel less deprived but only helped my mental well being short term, not overall health. They still put odd ingredients that aren't good for us in gluten-free foods. I'd recommend skipping them and find a way to get inspired about cooking from scratch, trying new recipes, finding new favorite dishes, etc. That was what finally got me past feeling a loss of not being able to eat out – making dishes that were better than those that I can get in restaurants.

And take the kitchen-contamination advice seriously when it comes to replacing anything porous or that can't be cleaned well. I didn't replace my toaster right away and continued to get glutened from it for the first month from it. Darn those crumbs!

In the meantime, sending positive vibes your way. 

[Renegade]

Personally I think if there are any withdrawal they are from your body not knowing how to digest the food anymore, craving could be in there just like one crave coffee but it goes away. But in no way could you compare heroine and gluten as being as addictive, that is just silly and only serve to remove guilt. Gluten is a poison for celiac it is not a drug. I crave gluten food every time I see it, but saying no is very easy as I know it will only make me feel bad and postpone my healing, I don't go all day craving it like the plague and I had gluten just about 3 meal a day for my entire life.