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Gluten Withdrawl

JMK27

By JMK27
in Coping with Celiac Disease

Recommended Posts

JMK27 Newbie
JMK27
Posted

Hi,

I'm new to the site so, pleased to "meet" you all.I am a 45 yr.old female and I was just diagnosed with Celiac Disease 2 weeks ago. I'm still rather shocked, to be honest after doing research on line I figured I had Leaky Gut Syndrome....due to years of many bad habits... drinking, ex-smoker....tons of coffee(not to mention a Cdiff infection from the antibiotic Clindamycin over a yr. ago). But after tons of blood work, GI testing and an endoscopy the results came back positive for Celiac's.

Anyway, I started my gluten free diet 5 days ago and I am miserable, and I swear... sicker than I was before! I'm weak, I can't sleep, I'm dizzy and have had a migraine every single day to the point I could throw up.

Is it possible that I am having gluten withdraws symptoms? Does such a thing exist? And if so, how long should it last? Any insight would be helpful.

Thanks.

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WinterSong Community Regular
WinterSong
Posted

Hi and welcome to the board! So sorry that you're not feeling well. Sounds like you are definitely going through withdrawal. The length of time it lasts is different for everyone. I believe for me it was about three or four weeks. I still got stomach aches, but I think the worst part was the migraines. It was scary because I had never had them before. I was so dizzy and in so much pain that I nearly fainted at work. I also was extremely hungry (compared to having no appetite before), probably because my body was finally starting to accept nutrients.

The most important thing is to stick with the diet and things will get better soon.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi,

I'm new to the site so, pleased to "meet" you all.I am a 45 yr.old female and I was just diagnosed with Celiac Disease 2 weeks ago. I'm still rather shocked, to be honest after doing research on line I figured I had Leaky Gut Syndrome....due to years of many bad habits... drinking, ex-smoker....tons of coffee(not to mention a Cdiff infection from the antibiotic Clindamycin over a yr. ago). But after tons of blood work, GI testing and an endoscopy the results came back positive for Celiac's.

Anyway, I started my gluten free diet 5 days ago and I am miserable, and I swear... sicker than I was before! I'm weak, I can't sleep, I'm dizzy and have had a migraine every single day to the point I could throw up.

Is it possible that I am having gluten withdraws symptoms? Does such a thing exist? And if so, how long should it last? Any insight would be helpful.

Thanks.

Welcome to the board!

Yes it is possible you are experiencing gluten withdrawal. I went through that for about a week but I also gave up soy, dairy and bunch of other thigns at the same time. I'm afraid the amount of time it lasts is going to be different for everyone, but from what I have read it should not last more than a couple weeks. One thing you may want to look at is what you are eating now --It is not uncommon for people to develop additional intolerances/allergies once they go gluten free. Many do become lactose intolerant or casein intolerant once they go gluten free. So if you are eating more dairy then you used to eat you might want to consider cutting it out for a few months and then tryign it again. As you heal you may be able to add it back in. Also if you are eating a lot of gluten-free substitues such as gluten-free pasta and gluten-free bread then you may have an intolerance to an ingredient in those substitutes that you never ate before going gluten free. Finally, as you heal you may become more sensitive in your reactions to very small amounts of gluten. So do be sure that you avoid even very small amounts of cross contamination (CC) by doing things like gettign a new gluten-free-dedicated toaster, new wooden spoons, new cuttign boards if yours are plastic or wooden and new pans if you have non-stick that are scratched. Collanders for draining pasta are also very difficult to clean because of all the tiny holes.

JMK27 Newbie
JMK27
Posted
  • Author

Hi and welcome to the board! So sorry that you're not feeling well. Sounds like you are definitely going through withdrawal. The length of time it lasts is different for everyone. I believe for me it was about three or four weeks. I still got stomach aches, but I think the worst part was the migraines. It was scary because I had never had them before. I was so dizzy and in so much pain that I nearly fainted at work. I also was extremely hungry (compared to having no appetite before), probably because my body was finally starting to accept nutrients.

The most important thing is to stick with the diet and things will get better soon.

Thanks. It's nice to know theres a place to go for advice! My husband still thinks I'm over-reacting. He doesn't understand that this isn't just a simple "allergy" and sees no reason for me to have special kitchen utensils or a seperate toaster.

JMK27 Newbie
JMK27
Posted
  • Author

Welcome to the board!

Yes it is possible you are experiencing gluten withdrawal. I went through that for about a week but I also gave up soy, dairy and bunch of other thigns at the same time. I'm afraid the amount of time it lasts is going to be different for everyone, but from what I have read it should not last more than a couple weeks. One thing you may want to look at is what you are eating now --It is not uncommon for people to develop additional intolerances/allergies once they go gluten free. Many do become lactose intolerant or casein intolerant once they go gluten free. So if you are eating more dairy then you used to eat you might want to consider cutting it out for a few months and then tryign it again. As you heal you may be able to add it back in. Also if you are eating a lot of gluten-free substitues such as gluten-free pasta and gluten-free bread then you may have an intolerance to an ingredient in those substitutes that you never ate before going gluten free. Finally, as you heal you may become more sensitive in your reactions to very small amounts of gluten. So do be sure that you avoid even very small amounts of cross contamination (CC) by doing things like gettign a new gluten-free-dedicated toaster, new wooden spoons, new cuttign boards if yours are plastic or wooden and new pans if you have non-stick that are scratched. Collanders for draining pasta are also very difficult to clean because of all the tiny holes.

To be honest I haven't tried any gluten free products yet. I'm keeping it simple so I don't screw up. Fruit for breakfast, salad for lunch, chicken and rice for dinner.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

To be honest I haven't tried any gluten free products yet. I'm keeping it simple so I don't screw up. Fruit for breakfast, salad for lunch, chicken and rice for dinner.

That's good! That's what you need to do at the start. If your diet before was heavy on processed food then you may be detoxing from other chemicals and preservatives as well as gluten. Give it a few weeks. Also waiting several months to try any gluten-free bread will help you "forget" what regular bread tastes like. Not all gluten-free stuff is bad, but even the best ones are just different in texture and taste. So they may taste better to you the longer you wait to try them. And if you husband is not on board with helping you avoid cc send him here to ask this board how serious it is. I don't even let my husband kiss me if he has been eating gluten. He has to brush his teeth first. It sort of takes the romance out of it but one little kiss and I could be sick for a week to 10 days.

Chad Sines Rising Star
Chad Sines
Posted

Depending on how you ate then and how you ate now, I think a lot of the "gluten withdrawal" is a reaction to a significantly changed amount of carbs you are consuming. Still any change in eating habits will confuse your body for a time as it readjusts. meat eater to veggie, high carb to low carb.

Ironically some of the gluten free substitute foods make me the sickest.

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srall Contributor
srall
Posted

Gluten free was a couple of really bad weeks. I probably was detoxing from processed foods too. Grain free a year later was still a withdrawal, but much easier. By that point my diet was whole unprocessed foods.

Good job for keeping your diet clean! I think that'll help.

Jeff In San Diego Rookie
Jeff In San Diego
Posted

Hang in there!

On the migraines...I have been a life-long migraine sufferer. I had a few weeks of bad withdrawal symptoms of various kinds...but I'm happy to report that in my eighth week now I've not had any headaches in three weeks now. That is truly amazing for me! So it will get better, and even better than before gluten-free.

cahill Collaborator
cahill
Posted

Yes gluten withdraw is real,,

Open Original Shared Link

Whatnext? Rookie
Whatnext?
Posted

Is it possible that I am having gluten withdraws symptoms? Does such a thing exist? And if so, how long should it last? Any insight would be helpful.

Thanks.

It may be possible to experience gluten withdrawal, but I agree that it is also likely that you are eating less carbs and even protein. I find when I am feeling really fatigued, if I had a little protein and carb together I feel better in a very short period of time. Usually a little laughing cow wedge on a gluten free crackers (both sold at Sam's) does the trick. I would take a look at what you are currently eating and try to make sure that you are getting the correct balance of carbs and protein.

Good luck, I hope you find the right balance and start feeling better soon.

WinterSong Community Regular
WinterSong
Posted

Thanks. It's nice to know theres a place to go for advice! My husband still thinks I'm over-reacting. He doesn't understand that this isn't just a simple "allergy" and sees no reason for me to have special kitchen utensils or a seperate toaster.

Yeah my boyfriend thought that I was overreacting and being paranoid, too. He's easing into things better though now that he sees that I'm still the same person and can eat all of the foods I love with a few switches (and it helps that we both like different types of food, so we don't share many of the same jars). There are still things to discuss, of course, as time goes by and I find out how sensitive I am and if I have any other intolerances. Hopefully things will keep getting better.

Have you asked him to go to the doctor with you or do some reading together? Maybe buy two copies of the same book then sit down periodically and discuss what you read. It's hard to take in for the non-celiac in a couple, I'm sure, so I hope that you're husband will begin to understand soon.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Please use the search box on this forum and type in "withdrawals" Read and read and read old threads about this. Gluten withdrawal is a real thing and it's been documented with studies. It can last a couple of months and the symptoms can go in phases. Often there is brain fog, fatigue, dizzy spells, dehydration. Your intestine is destroyed and once you go off gluten your body sends a huge construction crew in to fix all that damage. That takes a tremendous amount of energy so of course you will be fatigued just as you would be fatigued if you were a burn victim healing from damage on your skin.

I've been gluten free for almost a year and a half. The beginning was rough for me but now at 41 I'm healthier than I was at 21. Stay on the diet. It's worth it.

Weird things can happen like pooping 10 to 12 times per day. Alternating diarrhea with constipation.

Most people do start seeing some of their celiac symptoms going away and then little by little they go away over time. It was a full SIX months before I had ONE symptom free day. I was extremely ill to the point of debilitated when I got diagnosed. I did see improvements and all the time things got better a bit here and a bit there.

You should NOT take the advice of another poster to eat Laughing cow cheese right now. The tips of the villi are where the lactase is produced to digest dairy. The best thing to do (don't hate me now) is to also go off dairy and soy. Your system can't handle it. You must eat a clean simple diet for healing. Don't start eating gluten free breads and crackers just yet either.

Eat rice, fruits, vegetables, nuts if you can tolerate them, simple meats. If you are dying for bread Rudi's gluten free original has simple ingredients. Gluten Free Pantry Basic White Bread mix also has simple ingredients and is easy to bake.

I know it sucks to have to avoid gluten and then be told to avoid other things, but it's only temporary. All my restrictions got better and now I eat dairy and soy with no problems although I limit soy.

Simple clean diet. Let your gut heal! It works.

navigator Apprentice
navigator
Posted

Please use the search box on this forum and type in "withdrawals" Read and read and read old threads about this.

Thanks for that. I'm just back from the G.P. following three weeks gluten free. I've been struggling with fatigue since December and I feel that it's got worse over the past three weeks, although it may just be that I'm so worn down with it that my ability to cope has been reduced. I come home from work and sleep, then I make dinner and sleep, then go to bed sleep the whole night and I'm so exhausted in the morning. Anyway on Wednesday I was so exhausted I just broke down crying at work and went home sick.

My G.P. has given me sick line for a month but has also told me to go back on gluten for six weeks. My antibodies were low but I'd been wheat free for six months so he expected that. He feels that after 3 weeks gluten free I should be feeling an improvement and that it maybe something else. He wants me to go back on gluten to see if my antibodies spike. Also deficient in Vit D so he's started me on a course of these. Blood pressure and cholestrol were both high so now on statins. From what I've read on this forum this can still all(with the exception of cholestrol) be answered by coeliac and gluten withdrawal.

Any thoughts. Thanks

Whatnext? Rookie
Whatnext?
Posted

You should NOT take the advice of another poster to eat Laughing cow cheese right now. The tips of the villi are where the lactase is produced to digest dairy. The best thing to do (don't hate me now) is to also go off dairy and soy. Your system can't handle it. You must eat a clean simple diet for healing. Don't start eating gluten free breads and crackers just yet either.

Ok. That poster was me. I should have led with "I'm totally new to this whole gluten free thing. :blink: So I may not be the most experienced, but for me..."

it has helped me to not feel so fatigued. Perhaps dairy is not the best thing for you. I don't feel like I am having an issue with dairy, but maybe that's because I don't think I could handle giving up another food right now. Maybe I'm just mentally blocked to the possibility that dairy could be a problem. Definitely do more research.

CJ2011 Rookie
CJ2011
Posted

I am on week 3 gluten free. At about 10 days into it I starting having dizziness, extreme itchiness and serious fatigue. That lasted for 2.5 days. Instead of thinking I was reacting to some other allergen as I immediately thought, I decided to ride it out and stick with just eliminating the gluten and see if it was withdrawl symptoms. In my case, that is what it turned out to be -- I remained gluten free but did not eliminate anything else and the symptoms have gone away completely. Today, however, I have started feeling some stomach pain (I never had the gastro distress before -- I have/had DH and other symptoms from gluten). I am wondering if this is my gut trying to heal? My question to others, did you feel pain when you hadn't before when your stomach was healing?

Thanks

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