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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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