Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Withdrawal?

sweethome

By sweethome
in Coping with Celiac Disease

Recommended Posts

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. :-(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.