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Gluten Withdrawal-Does Everyone Go Through It?


snowflake

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snowflake Newbie

Hello, I started a gluten free diet 2 days ago. Yesterday I felt alright except for feeling like I had low blood sugar on and off. I think that I didn't eat enough protein in the morning. Today was completely miserable. I have been exhausted beyond reason, I can't stay awake, but when I try to sleep I wake up every few minutes. I have had brain fog to the point of basically unable to function beyond going to the bathroom and eating food I prepared yesterday. I've also had a bad headache this evening. I took a Lortab for the headache and the fog began to dissapte after about 10-15 minutes. I still don't feel well, but I'm a heck of a lot better than I was awhile ago.
 

I did some research and found out about gluten withdrawal (wish I had known that earlier so I would have been prepared). I also came across some articles about gluten and the fact that they contain a small amount of opiates. What I'm wondering is if there is a link between the withdrawals and sensitivity or if people who aren't gluten intolerant also experience withdrawals. Basically, I don't mind going through the withdrawals if I will feel better at the end of it. But I'm going to be seriously upset if I go through this for weeks and it turns out I'm not gluten intolerant. I would also appreciate any tips for dealing with the withdrawal symptoms that anyone would like to share.

 

A brief synopsis of my health in case that is helpful at all:

 

I have a long  list of health problems including Crohn's Disease(2 bowel resections-missing 18 inches of small intestine), adreanal fatigue, RLS, various vitamin deficiencies,  possible Fibro or CFS, and some other various issues that I can't remember at the moment. :huh: I did test positive for something (I think it was the genetic marker...I'll have to look it up) when I did the saliva testing for my adrenals, but I tested negative for some other test my gastro. doctor did (I know it was a blood test).


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mushroom Proficient

To the best of my knowledge, no one goes through gluten withdrawal unless they have a sensitivity to it (or I could be wrong since so few people eat truly Paleo and thus gluten free voluntarily, or at least we don't hear whether they suffer it).  It is possible to test negative for celiac via blood tests and yet still be gluten sensitive.

shadowicewolf Proficient

Ah, I went through it. Mood swings, the whole deal.

GottaSki Mentor

Yes...well everyone in my family did.

1desperateladysaved Proficient

Hi Snowflake,

 

Yes, I did withdrawal I dealt mostly with foggy brain almost to dizziness.  I had extra bloating and fatigue.  Meanwhile it seemed like people expected me to feel better right away. 

 

One day when it was particularly bad, I did some aroma therapy.  I diffused peppermint essential oil in the room.  I felt better. If you don't have a diffuser, you can just put a couple of drops on your front neckline.  Peppermint candy could work IF it were real peppermint.  I had forgotten about this, until my functional medicine nurse asked if I ever tried aromatherapy for my symptoms.  She approved of peppermint, for this purpose so much, she wanted me to work there.  I didn't have time for the daily 6 hour drive, though. 

 

Lastly, take time if you have it, to rest..  It sounds like you can have some down time?  It could be a while, but you are on the right track to feel better.  Consider this also, I usually feel my absolute worst, just before there is some improvement.  I hope improvement will happen for you!

 

I mostly am beyond my fog, but having 30 years of trouble, I had some pretty complicated reactions to other food and things to deal with.

 

Get Well, Snowflake  ***** (These are my flowers to get you well)  Perhaps they are red Mint flowers?

Diana

cavernio Enthusiast

I am a100% dx celiac and I can say I didn't notice a gluten withdrawal. I wasn't eating only fresh food when I began though, I went out and bought all those gluten-free flours and pasta and a few baked things, so if I'm one of those who is very sensitive to gluten it probably would have been more of a tapering.

Gemini Experienced

I never had one moment of any gluten withdrawal because I was so ill at the time I was diagnosed, I was happy to go gluten-free and get better.  I also had just about every symptom and complication you can have with Celiac so if I did go through any withdrawal, it was probably masked by the fact I felt so bad, in general, from eating wheat.  Many times, when changing your diet, people can go through mood swings and feeling lousy because your mind wants the offending food and you're not complying.  Why wouldn't the same symptoms happen with food that you get with alcohol or drugs?  Sugar is one of the biggest withdrawal foods out there so I'm sure wheat fits in somewhere.  After a couple of weeks, things get vastly better with coping.


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nvsmom Community Regular

I too had a withdrawl. Yuck. For me, it lasted about 10 days. I was cranky, tired, cranky, had a huge migraine, and cranky... I'm lucky my family didn't disown me.  ;)

 

Hang in there and be nice to yourself for a week or two

love2travel Mentor

My withdrawal lasted about two weeks.  When you think about it, two weeks in one's lifetime really is a blip.  You will feel better soon.  ;)

 

My husband went mostly gluten free with me.  When I say mostly I mean in our home he is gluten free.  He does have pizza or whatever at work from time to time.  He had no withdrawal at all but as far as we know he does not have celiac (was tested). 

daisy buchanan Newbie

I was wondering about this too. 

peanutbutterandjelly Newbie

Really glad I discovered this forum before my appointment next week for my gastroscopy confirmation. Preparing my poor man and family to cop all kinds of lovely from me. Can't wait to get past that stage and be happily gluten-free.

  • 3 weeks later...
rene83 Rookie

Seeing this has made me feel so much better. I am on day 7 of being gluten free after a surprise celiac diagnosis :rolleyes: . Ever since I have had headaches, I am so emotional I wish I could step outside my body and shake some sense into myself (seriously I cried over bacon the other day, marshmallows yesterday :mellow:  <_<  :)  :wub:  :angry:  :blink:  :rolleyes::mellow:  :)  :mellow:  :)  :angry:  ), and I have never been so exhausted in my life. I am shocked I am functioning at a level where I can breathe on my own!! Yikes! I am also getting the fun runs now :wacko: . I wish this withdrawal was over already I am not a happy camper. :(

Celiac Mindwarp Community Regular

Hey rene83

I hope things start to improve for you soon, most people seem to do so fairly quickly.

I never quite worked out if I had gluten withdrawal, or I was still wrecked after my gluten challenge, but my symptoms were very similar to yours, and I was just a bit useless for a couple of weeks or so. I stood in tears in a health foods store because I didn't know what to eat! There is often a mental as well as physical response.

Come here if you need a rant, and let us know how it goes :)

Deaminated Marcus Apprentice

When i went gluten free over 2 years ago, I went into hyper mode at the start.

I don't remember how long it lasted. It must have been over a month.

I could barely sleep and I was bouncing off the walls with energy and I was rambling on full speed when I spoke.

 

Thanks Mushroom. That is encouraging as I still don't have a diagnosis.

  • 2 weeks later...
rene83 Rookie

Hey rene83

I hope things start to improve for you soon, most people seem to do so fairly quickly.

I never quite worked out if I had gluten withdrawal, or I was still wrecked after my gluten challenge, but my symptoms were very similar to yours, and I was just a bit useless for a couple of weeks or so. I stood in tears in a health foods store because I didn't know what to eat! There is often a mental as well as physical response.

Come here if you need a rant, and let us know how it goes :)

Thanks, I may be taking you up on that soon. I am almost 3 weeks in (19 days to be exact) and I have never felt worse in my life :( 

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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