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Gluten Withdrawal Symptoms

Guest Addicted2Gluten

By Guest Addicted2Gluten
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest Addicted2Gluten
Guest Addicted2Gluten
Posted

I was gluten free for about 2 years and for the past 3 months I have been on a "gluten challenge." Now, I am going back onto the gluten free diet and am experiencing a lot of odd symptoms. I'm not sure if I had these the first time when I went gluten free. For instance, I have been off gluten for about 3/4 days and have had Insomnia, not much of an appetite, very achy and feeling hot and cold like I have the flu, headaches, and I've even been shaking. Has anyone experienced any of these symptoms? Or any other symptoms when going gluten free?

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KaitiUSA Enthusiast
KaitiUSA
Posted

When I first went gluten free I did have similar problems. I think it is because your body is adjusting to the change and trying to heal itself. For me it went away after a few weeks and then my symptoms slowly but surely started to disappear :D

minibabe Contributor
minibabe
Posted

I had the exact same thing, but I was experiencing the pain in my abdomen. When I stopped eating that Malt O Meal cereal, a week ago, I was in pain for several days after that and I was eating things that where 100% gluten-free. I was eating things that only said gluten-free on the package. I thougth that it was really weird, but I am glad that I am not the only one that experienced this. I really hope that you feel better, I did after like 4 or 5 days. Dont worry there is an end! :D

Guest Addicted2Gluten
Guest Addicted2Gluten
Posted

Thanks for your replies. I have been experiencing leg cramps too, but this may be a result of vitamin deficiencies.

Also, I found this in Wikipedia (online encyclopedia - www.answers.com), that I thought may be of interest:

"Beginning the diet can be difficult but not impossible. One of the biggest obstacles parents face is that individuals needing gluten-free, casein-free (Gluten-free Casein-free) diets often crave these foods much the same as an addict. In fact, parents often report withdrawal symptoms when gluten and casein are eliminated that are similar to addicts experiencing withdrawal from narcotic drugs."

gf4life Enthusiast
gf4life
Posted

Now, I've read that before in regards to Autistic kids, but I supposed it could also be applied to gluten intolerant people. I have a nephew who is Autistic and he throws fits if he can't have pizza, mac n' cheese, or buttered toast daily! They do not have him on a Gluten-free Casein-free diet, but he could really benefit from it.

I also felt like I had the flu for a while after going gluten-free after my gluten challenge. I was sicker on the gluten challenge than I had been before going gluten-free the first time, and the effects of it lasted a lot longer. My body just likes being gluten-free, and it was not happy with me for eating gluten again!!

God bless,

Mariann

cdford Contributor
cdford
Posted

I had them, but not as badly as my daughter. It was like dealing with a drug addict or an alchoholic with her. The endocrinologist said it is a normal reaction and that the body really has sort of become addicted to the sensation and reaction to gluten and has to adjust. The amount of time may vary. Stick with it. Let me assure you, the long term benefits are worth any short term problems. You might want to do like some smokers have to and keep appropriate snacks handy to keep your mind distracted. We used carrot sticks and gluten-free pretzels and such around here and it worked well.

rmmadden Contributor
rmmadden
Posted

I think gluten withdrawal is real. Your body gets used to living a certain way and then all -of-a-sudden things have changed. It took me about 2-months after going gluten-free that I finally started to feel somewhat better and I'm still not 100% (3-1/2 now months gluten-free). Also, I think it takes time to get used to eating some new foods that you never ate before. I ready somewhere on this message forum where the person asked how many had eaten Quinoa before being diagnosed? I certainly never did.

All you can do is to try and be gluten-free and let time hopefully heal your intestine's. Best of luck!

Cleveland Bob B)

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Guest BellyTimber
Guest BellyTimber
Posted

Nuts are great! (Some say, be wary of natural fat content, invisible moulds - I say, I need to keep it simple, nuts are great!) :lol:

Can you get hold of "Bombay mix", poppadums, prawn crackers ... :P

I am astonished at the report of a gluten challenge after 2 years gluten-free, you had synptoms on going gluten-free again but don't describe your experience of the challenge after such a length of time - have I understood correct - anyone else been through a similar scenario - this is what has been urged on me but I have been advised against it - any infringement puts me in agony ...

best wishes

:)

Michael

Guest eatinglotsofsushi
Guest eatinglotsofsushi
Posted

I've read some of the posts that refer to symptoms of post-diagnosis gluten withdrawal and they're allaying some of my fears since I have a heart condition (2 heart attacks, quintuple bypass, etc.) at 57. I have been gluten-free for 2 weeks and my appetite is depressed, I am tired all the time and, as others have mentioned, feel almost 'flue-like'. If any of you have coronary artery disease, you know how these symptoms get your attention.

I'd be interested to know if there are any other 'cardiac kids' on the board that can share some of their gluten withdrawal experiences with me. I appreciate the support and information that you all share on this board.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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