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Gluten Withdrawal Fatigue - How Long Does It Last?


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19 replies to this topic

#1 WriterCat

 
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Posted 03 April 2008 - 04:39 PM

I went gluten-free about 2 months ago. I've had great success losing weight now - my body finally seems to be working the way it's supposed to. I did go through a short withdrawal period that included the standard headaches and awful, flu-like feelings others have described as withdrawal, but I've had lingering fatigue. Even now, I'm about to fall over in this chair. Some days it's not so bad, but others -- I'm ready to hit the sack EARLY! I've seen a few mentions of fatigue on this message board, but I guess I'd like to hear from everyone how long their fatigue lasted. What can I do to lessen fatigue (if anything)? Where's the light at the end of the tunnel? When should I worry that my fatigue is something other than part of going gluten-free? Can anyone explain why fatigue happens when going gluten-free? Thank you in advance.
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#2 tom

 
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Posted 03 April 2008 - 05:04 PM

Are you also off dairy & soy?
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
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#3 feelingbetter

 
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Posted 03 April 2008 - 05:25 PM

I can so relate to your fatigue. I have been gluten free for one month. Well.. to the best of my ability anyway. It is hidden in most things. I am now 1 week off dairy and soy. I sleep alot. I was never one to nap in the afternoon but now I do every day.
I too have thought that maybe I have something morbid like cancer or something. I really feel like crap especially after giving up dairy.
In fact tonight I just broke down and cried and cried. I am so tired of being sick and tired.

Brenda
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Brenda

Diagnosed with chronic fatigue, fibro, anemia, chronic constipation, low blood pressure, migraines, headaches, severe low sugar reactions and bipolar disorder. I was basically disabled.
March/08  Gluten and dairy free - Tested positive through enterolab
April/08   Gave up tomatoes, corn, soy, potatoes and peanutsMay/08  
May/08   Started SCD. Dramatic improvement!!! All symptoms above have mostly gone away.  Will stay on SCD for at least a year or two. My diet consists of 65% raw fruit and vegetables,  25% protein and the balance good fats.  NO PROCESSED FOODS!
Oct/08 Now 80-90% Raw Food Diet. My health continues to improve and energy is coming back.

#4 MelliDuff

 
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Posted 04 April 2008 - 11:11 AM

I can so relate to your fatigue. I have been gluten free for one month. Well.. to the best of my ability anyway. It is hidden in most things. I am now 1 week off dairy and soy. I sleep alot. I was never one to nap in the afternoon but now I do every day.
I too have thought that maybe I have something morbid like cancer or something. I really feel like crap especially after giving up dairy.
In fact tonight I just broke down and cried and cried. I am so tired of being sick and tired.

Brenda


I cried about it today, i am extremely depressed and no one seems to understand me. I have to give up a way of life I have known for 32 years. Like you, I am sick and tired of being sick and tired. It's sad to wonder "how long do I have to feel this way? when will this be over?". The only comfort is knowing that at least with this illness we are in charge of our sickness. It is something we have control over and there is and will be a light at the end of the tunnel. We will get better, we don't have cancer (most of us) and we do have a choice. Although It is hard to keep telling yourself that.

I think we might get tired because we are doing a lot of internal healing and most of us are deficient in vitimens due to the mal-absorption. I went gluten-free for a month (felt great after 2 weeks) then ate gluten on purpose because I am that much of a food junky. I have been sick sick ever since. I finally went to the kitchen (i have a 4 person family) and threw everything poisoned away. We deserve to feel good and we will. I think the fatigue usually last from 1 week to 3 months, but everyone is different. If you have not tried taking b12 get yourself some and dose at least of 1000mg. You may want to get your iron lvl's checked too. Being deficient in either one of those (iron or b12) with make you feel physically exhausted.
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#5 feelingbetter

 
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Posted 04 April 2008 - 12:02 PM

I have been on high doses of vitamins and minerals since Oct. 07. My blood tests showed that I am low normal in iron and he prescribed 2 weeks of B12 shots which I gave myself. I have been supplementing with iron for most of my life. I take iron 3 times a week. My doc told me it is adrenal fatigue and is treating me for that.
It seems that whenever I go off of things I go through withdrawal and fatigue. First gluten and then dairy.
Thanks for your reply. It helps sometime to know that I am not alone. :(

Brenda
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Brenda

Diagnosed with chronic fatigue, fibro, anemia, chronic constipation, low blood pressure, migraines, headaches, severe low sugar reactions and bipolar disorder. I was basically disabled.
March/08  Gluten and dairy free - Tested positive through enterolab
April/08   Gave up tomatoes, corn, soy, potatoes and peanutsMay/08  
May/08   Started SCD. Dramatic improvement!!! All symptoms above have mostly gone away.  Will stay on SCD for at least a year or two. My diet consists of 65% raw fruit and vegetables,  25% protein and the balance good fats.  NO PROCESSED FOODS!
Oct/08 Now 80-90% Raw Food Diet. My health continues to improve and energy is coming back.

#6 bon appetit

 
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Posted 04 April 2008 - 01:16 PM

Well you at least have company, I've been off gluten for almost three weeks and I am having crippling headaches and I am completely exhausted everyday. On the up side I have never eaten so well in my life and I know that I will reap the benefits of it. I think for now we just have to give into it and sleep till we are through this adjustment.
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#7 AliB

 
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Posted 04 April 2008 - 01:42 PM

I went gluten-free at the end of Jan. I realised pretty quick that it wasn't just gluten that was my problem so also dropped dairy and most carbs and sugar as well.

I decided to cut right to the chase and cut out everything that could be hindering my recovery and so far it seems to be working. I had the gamut of weird symptoms for a few weeks, headaches, numb hands and feet, diarrhea, then fatty stools for a while, very fatigued (well, no more than normal but more than I would have expected on this new diet!), but after 2 months now feel as though I am beginning to come out the other side. Gluten works like a neurotoxin and is, like carbohydrates in general, very addictive. When we stop eating the stuff we go through withdrawal and detox for a while but its only a short 'trip'!

Unfortunately I am still tired but that is my fault for not getting to bed early enough! I had so many years of crap sleep that going to bed was an effort and now I am sleeping better I need to try and get myself into the routine of doing it properly. I am getting more energy and although I still have a way to go, I feel heaps better than before going gluten-free when I was in constant pain. Some recover quickly for others it can take months or even a year or more depending on the type and severity of their illness. We can help it along some by eating simply, taking some good supplements and getting plenty of sleep for restoration (yeah, yeah, I can talk about that one!) and by doing that we give our poor old beleaguered liver some well-deserved support - if the liver is sluggish and full of toxins that can make us very tired (I took some Milk Thistle for a while too which is a good liver support, my liver had a Spring Clean and my hair stopped falling out!).

I have been focusing on a very basic diet, fresh 100% meat, fish and poultry, fresh veggies and fruit and a little honey and yogurt, which I can generally tolerate. I have been trying to stick to the Specific Carbohydrate type of eating and have been making my own long-cultured yogurt which is better than the shop stuff.

It is hard - sometimes we are so impatient that we want to be better quickly, but often we have taken years to get to the stage we're at so the improvement may be gradual rather than quick.

I have noticed quite a lot on the forum that some get better initially then go backwards, or just get to a certain level of health but no further. I have a hunch, well more than a hunch. I am carbohydrate intolerant. I suspect there are a lot out there in the same boat as me. When they stop Gluten, a lot start to feel deprived, missing their carb 'fixes'. They then start to replace the gluten with lots of other carbs. Eventually they start to become intolerant of these other carbs and can't figure out why they feel rotten again.

I know that I am probably going to have to limit carbs in the future to an occasional treat rather than the everyday, all-day consumption it was, but hope that eventually I will be able to re-introduce a few carbs and be able to cope with them.

Gluten is a deceptively insidious poison that looks good and tastes great, but is doing all of us a great deal of damage. We have to look at it for what it really is and relegate it to the trash can, mentally as well as physically, and just remind ourselves that unlike all those poor oblivious souls out there who are eating the stuff and suffering, we have been liberated.
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#8 motif

 
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Posted 04 April 2008 - 02:52 PM

guys, I just started be gluten free since 2 weeks and already can see the difference.
I strongly suggest doing light exercises like yoga etc, it help with digestion and muscle relaxation.
I'm taking also B12, magnesium, vitamin C, omega-3 and pulling sunflower oil every day.
All that helped me to regain strength and get rid off depression.
good luck
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#9 lizard00

 
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Posted 04 April 2008 - 03:29 PM

I can so relate to your fatigue. I have been gluten free for one month. Well.. to the best of my ability anyway. It is hidden in most things. I am now 1 week off dairy and soy. I sleep alot. I was never one to nap in the afternoon but now I do every day.
I too have thought that maybe I have something morbid like cancer or something. I really feel like crap especially after giving up dairy.
In fact tonight I just broke down and cried and cried. I am so tired of being sick and tired.

Brenda


I have sooo been there. I have been gluten-free since Nov 07, and I am still celebrating the days I don't take an afternoon nap. It really took me until the end of January to start feeling like I had more energy, although I still get hit sometimes in the afternoon. I am 25... I thought how in the WORLD am I going to live the rest of my life this way. But, it DOES get better!!! All of you are right, you have to be patient. We were sick for a long time (most of us) before we discovered what was behind it, so it takes time to heal. It is truly an exercise in patience.

B12, magnesium and a good multivitamin have really done the trick for me. Make sure your B12 is sublingual (better absorption for us) and should be the methycobalamin (i think the spelling is right) as opposed to the cyanobalamin (again with the spelling). I'm not back to full force yet, but in comparison to last fall, I have improved leaps and bounds. I'm hoping the next 6 months will be as great as these.
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Gluten free November 2007
IgA Deficient, Neg Bloodwork, Double DQ2 Positive
Dietary and Genetic Diagnosis June 2, 2008
Soy free Jan 09

#10 Ivanna44

 
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Posted 04 April 2008 - 11:32 PM

I went gluten-free about 2 months ago. I've had great success losing weight now - my body finally seems to be working the way it's supposed to. I did go through a short withdrawal period that included the standard headaches and awful, flu-like feelings others have described as withdrawal, but I've had lingering fatigue. Even now, I'm about to fall over in this chair. Some days it's not so bad, but others -- I'm ready to hit the sack EARLY! I've seen a few mentions of fatigue on this message board, but I guess I'd like to hear from everyone how long their fatigue lasted. What can I do to lessen fatigue (if anything)? Where's the light at the end of the tunnel? When should I worry that my fatigue is something other than part of going gluten-free? Can anyone explain why fatigue happens when going gluten-free? Thank you in advance.



Hi WriterCat,
First off, welcome to the "gluten free gang" so to speak.

You are in the right place for support, coping strategies as well as venting odd time :D

You are longer at this gluten-free than me, it has just been a month now for me. I do very much relate to the fatigue. This week I've really been tired. But, then I accidently gluttened myself last week, and was 3 days sick with it (so it might be that for me). I do take extra vitiamans, induced the stress b tab vits, as well as a bunch of other daily vitimans I take. One I've just recently threw away as it said "barley grass" in the non-med part of it.

Most days right now it is yo=yo for me, one day have ok amounts of energy and other days like today, ready to sleep for month.

Again I think it's all individualized the response times. But, wow, nice you lose some weight :) :) I read in one book that gluten had some people retain water, I wonder if it made us retain fat too. LOL :D *wishful thinking there* haha.

Hang in there; you'll get through the ruff rides of going without a particular food. Going gluten free don't hurt anyone; if anything it makes them focus on a more healthy diet and life style.

>>>hands WriterCat a pillow and a good book, enjoy a great book while you are in this rest needed stage.
hugs
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Follows Compassion Rules "Treat others; they way you wish to be treated"


blood test negative: celiac However, doctor felt other factors in blood works warranted trying the gluten-free diet
April 7/08 Doctor confirms gluten intolerance/ remain gluten-free for 2 more months; and repeat tests


Gluten free since March 4/2008 (other than accidently, or unknown gluten used--- its a learning process, Gluten is everywhere!)

"People are like stained-glassed windows. Best viewed in the light!" unknown author

[font="Arial"] "I am only as strong as the coffee I drink, and the hairspray I use" :)

#11 gfp

 
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Posted 05 April 2008 - 12:08 AM

Gluten works like a neurotoxin and is, like carbohydrates in general, very addictive. When we stop eating the stuff we go through withdrawal and detox for a while but its only a short 'trip'!

Just really some pointers so you are not confusing yourself ....
First gluten is a protein, not a carbohydrate. It comes packaged in carb rich foods but the gluten itself is a protein.
Secondly the primary toxicity of gluten is as a exorphin, that is an external protein that can bind to the endorphin receptors.
These are the same receptors that opiates attach to ... withdrawal is in many ways similar to opiate withdrawal.

Some people get it bad and others less so ... so in answer to the OPS question ...

Can anyone explain why fatigue happens when going gluten-free?

This is partly the exorphin withdrawal ... unlike morphine gluten doesn't quite fot the receptor and hence the process damages the receptors. When our body thenwants to give us a boost it releases endorphins (via a whole chain of stuff starting with seratonin if I remember correctly). However the natural "pick me up" cannot bind to the damaged receptors.

On the other side, where are you and how's the weather? Do you get out and get some fresh air? etc. etc.

Others mentioned depression and this is easy to slip into with gluten withdrawal. Its not so easy to do as to write but get out and get some sun and fresh air ... tire yourself out physically and get some good sleep, its also possible your not sleeping well (as in not quality sleep) .. again the seratonin chain being messed.

Back to AliB
The low-carb diet might not be helping.... carbs are much easier for the body to digest and provide energy. If you don't eat enough then the body will use the protein you need for recovery.
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#12 AliB

 
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Posted 05 April 2008 - 03:36 PM

First gluten is a protein, not a carbohydrate. It comes packaged in carb rich foods but the gluten itself is a protein.
Secondly the primary toxicity of gluten is as an exorphin, that is an external protein that can bind to the endorphin receptors.
These are the same receptors that opiates attach to ... withdrawal is in many ways similar to opiate withdrawal.

This is partly the exorphin withdrawal ... unlike morphine gluten doesn't quite fit the receptor and hence the process damages the receptors. When our body then wants to give us a boost it releases endorphins (via a whole chain of stuff starting with serotonin if I remember correctly). However the natural "pick me up" cannot bind to the damaged receptors.

Back to AliB
The low-carb diet might not be helping.... carbs are much easier for the body to digest and provide energy. If you don't eat enough then the body will use the protein you need for recovery.


Thanks for explaining that in greater detail - it is useful to know. I know gluten is a protein but I always think of it as a carb as it doesn't come without it! If I think of bread, cakes, cookies, etc., protein is not what comes to mind. LOL :lol:

I am having to go low-carb as I have a problem processing them and always have had. My body doesn't digest them properly, possibly due to gut damage and lack of the necessary enzymes. Being diabetic they push my blood sugar up too high. The only two times in my life I ever felt well and was able to really shift the fat was when I was low-carbing. As soon as I re-introduce the carbs, my body goes haywire and the internal yeast goes out of control. I am making sure I get plenty of protein to keep the level up, particularly fish, which is the best form for me and I am getting some carbs in fruit and veg and a little rice, etc. I think I must be the 'Hunter-Gatherer' type who copes better with protein than carbs!
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#13 gfp

 
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Posted 05 April 2008 - 11:45 PM

and I am getting some carbs in fruit and veg and a little rice, etc. I think I must be the 'Hunter-Gatherer' type who copes better with protein than carbs!

Thats fine then, so long as you eat some vegatables is way better than non. If your doing that though I'd skip rice, its nutritionally pretty dead ... and instead go for green veg and things which will have a lot of the nutrients you miss in meats and fish alone.


Just also wondering with the yeast infection ... have you tried pro-biotics? It might not be a cure but it might alleviate the carb digestion. I think figures for rats show about 30% less efficient digestion for rats who have their gut flora removed and if you have yeast chance is its killing the good bacteria.

edit: Just thought as well. Its worth a try :D I once (years ago did food combining) (Hay's diet) noone ever explained well why but most/many people seem to digest better if they eat proteins and carbs separately (a few hrs between)
This does fit I guess if your the hunter gatherer type.

Scientific explanations on this are a bit slim .... but it works for a LOT of people (including me) and many of those people (like me) will be quite vocal and adamant it works... As a scientist it worries me (well only a bit) that its not explained but the rest of me says what the heck.. it works .. its something I now only do if I eel bad, usually after an accidental glutening.
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#14 Stephanie DH

 
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Posted 06 April 2008 - 07:17 PM

I can so relate to your fatigue. I have been gluten free for one month. Well.. to the best of my ability anyway. It is hidden in most things. I am now 1 week off dairy and soy. I sleep alot. I was never one to nap in the afternoon but now I do every day.
I too have thought that maybe I have something morbid like cancer or something. I really feel like crap especially after giving up dairy.
In fact tonight I just broke down and cried and cried. I am so tired of being sick and tired.

Brenda



I can so relate to that, so tired of being tired. I have been off of gluten for 2 wks and dairy for 3 days. I am so super bloated, and still not feeling well.


Stephanie
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Stomach issues at 19
Hives at 23
Biopsy said Celiac Sprue, Doctor later told me that was impossible.
Chronic Fatigue Syndrome at 29
Tested negative too many times to count.
Depression, brain fog, weight gain, stomach issues, lethargy, asthma, allergies, tired, tired, tired.& more tired.

#15 welshy

 
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Posted 07 April 2008 - 11:25 AM

I can so relate to that, so tired of being tired. I have been off of gluten for 2 wks and dairy for 3 days. I am so super bloated, and still not feeling well.


Stephanie


It's such a relief to know that i'm not the only one suffering from exhaustion. I've been gluten free for just over 3 weeks although keep accidentally glutenning myself (didn't know gluten was in vodka and cadbury's dairy milk!). Some days i feel great, other days i feel like i could sleep all day and barely have enough energy to get through the working day, and i'm only 25! Plus, my sex drive is zero! My dietitian wants me to eat as much dairy products as possible to boost my calcium intake. I've been doing this since last wednesday and i'm wondering if today (monday) it's catching up. Have been particularly tired and i'm really bloated and constipated for the first time in 3 weeks. It's disheartenning.
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