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Gluten Withdrawal?

sweethome

By sweethome
in Coping with Celiac Disease

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sweethome Newbie
sweethome
Posted

Hi everyone, I'm pretty new to this. I was diagnosed with coeliac disease (blood test and biopsy) just over a month ago and tomorrow I will have been gluten free for 4 weeks.

I'm having some trouble though. Although I do feel some improvement in my gastro symptoms (definitely less bloating and discomfort) I am really struggling with fatigue, dizziness/lightheadedness, and tired, aching muscles. It almost feels like I have a virus or the flu, although I don't think I do as no cold symptoms or sore throat or anything.

I felt fine the first fortnight of being gluten free, but weeks 2-4 have been really hard. Could this be from removing gluten from my diet. So far I haven't been eating any 'substitute' items, e.g. I've not had any gluten free bread, etc. I've just been eating things that are naturally gluten free.

I didn't expect to feel worse rather than better and I'm just hoping this is a phase. Anyone experienced anything similar? The dizziness/lightheadedness in particular is becoming really upsetting to me. :-(

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kareng Grand Master
kareng
Posted

Healing from any illness or damage takes extra sleep and calories.  Are you eating enough?  Sometimes, people make a drastic change when removing gluten from their  diet and are missing important nutrients or fiber.  

nvsmom Community Regular
nvsmom
Posted

I had this.  Big headache and big faigue... and big crankiness.  LOL It lasted about a week or so.  Hang in there.

I also experienced increased autoimmune flare-ups for a while.  I would feel flui-ish, get achey muscles, increased hair loss, mouth sores, and joint pain.  That settled down after about 6 months (for me).

I agree with Kareng that you should also make sure your calories aen't going to low.  Make sure you are replacing gluten-free items with other good foods. Whole foods if you can manage it.

Best wishes. I hope you feel better soon.

squirmingitch Veteran
squirmingitch
Posted

I had big time gluten withdrawal! Some people get off lucky & don't go through it but plenty of us get to experience it. Looks like you're one of us who doesn't get off lightly. The good news is that it usually doesn't last more than a month -- less for most people. Mine lasted about 2 months. Everyone is different.

Hang in there. 

notme Experienced
notme
Posted

yeah, withdrawal is a thing - some people get it, some don't.  it feels like the flu (mine lasted 2 weeks) so, i just treated it as such:  nap when you can,(many, many naps!)  lots of fluids, etc, i think i took some tylenol for head/body aches.  it should go away soon, or your days should start getting progressively better.  hang in there :)

sweethome Newbie
sweethome
Posted
  • Author

Thank you all so much for your input. My mum thinks I may not be eating enough now that I've eliminated gluten. I've got a 3 year old so busy most of the day working and running around after him, so that may not be helping. I'm not getting much time to just rest even though I'm feeling off. I'm hopeful this will pass soon but it's reassuring to hear that others went through similar in the early weeks.

I've been so so tempted to eat some bread to see if I miraculously feel better, but know that would just be stupid and I've got to keep going. I was walking upstairs today and my knees just felt like I was 100 years old (I'm 33). Ah well, onwards...! :-) Thanks again!

squirmingitch Veteran
squirmingitch
Posted

Just keep going forward girl, keep going forward. This will end. But don't be surprised if you get another withdrawal symptom which is stark raving starving hungry, hungry, hungry 24 hours a day. It was part of the withdrawal for me as well as many others. If that happens just go with the flow & eat your fool head off. That too will pass. LOL!

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nvsmom Community Regular
nvsmom
Posted

Hang in there. It will be getting better soon.

@squirmingitch I had that crazy hunger too. I ate so much, but I remember losing weight at the same time.  I enjoyed that!  LOL

BoJo Newbie
BoJo
Posted

Week four was the worst for me. I was grouchy and mean for several days. I was not fit to be around. That was years ago and I still shudder when I think of how I acted. 

sweethome Newbie
sweethome
Posted
  • Author

Well I think I can safely say it must have been withdrawal. I'm nearly 6 weeks in now and feeling okay. The dizziness lasted about a week, but I didn't get sick or come down with a bug or cold or anything, so I'm positive it was down to my changing diet. I have started to eat a little more as well so maybe that it also helping.

I'm noticing too that I feel a lot less bloated. If I have a big meal and feel really full, it's a strangely different - more comfortable - feeling of being full. It's hard to describe I guess. I *am* noticing that I'm REALLY hungry a lot of the time now!

It's amazing how much cutting something out of your diet can have so much effect...

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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