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Gluten Withdrawal?


sweethome

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sweethome Newbie

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

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

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

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

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

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

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

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

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

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
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
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    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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