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

Please-- Is This Normal?


julie nelson

Recommended Posts

julie nelson Newbie

Hi, I was diagnosed with celiac disease at the end of Feb. (had no symptoms but anemia and low vitamin levels).

I have been very strictly gluten free since March 1st.

Is it normal for my body to go all haywire? I have been feeling like junk- like an all-over sick feeling, weird red splotches in my face I haven't had before (that come and go), and my weight is fluctuating like crazy- (every few days gaining 5 lbs over night and slowly losing the 5 lb over the next week- then it happens again.)

 

I feel like I don't even know my body anymore.

Did any of you go through something similar?

Thank you!


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

YES!  Withdrawal affects about a third of us, and we can really feel it in that first month.  Extra tired, and headaches... My stomach would act up for no reason.  Yuck.

 

That being said, the red splotches don't sound like celiac disease.  It sounds like a food allergy.  Is it possible that your body is not agreeing with a gluten-free food substitute?  Some people react to guar or xanthan gum. Carageenan (sp?) is bad for some.  Others react increases in foods that may have bothered them a bit in the past but the celiac disease overshadowed and hid the symptoms.  I didn't realize that apples and pears bothered me because I usually had a stomach ache when I ate.  It took me a few months to figure that one out because, well, what's one more stomachache?  LOL ;)

 

Try keeping a food and symptom journal.  I may help.

Best wishes.

julie nelson Newbie

Thank you. I just did a search and found a lot of info on gluten detox/withdrawl. 

cyclinglady Grand Master

Anemia was my only symtom at the time of my diagnosis. But I had seven weeks between my blood panel and my endoscopy and I ate gluten like crazy! It was a fond farewell, except I started getting all the traditional stomach issues like bloating, stomach pinching, etc.

It took about six months for the anemia to resolve and finally after two years, I feel normal! I also had many allergies and food intolerances that have improved or resolved.

Be sure to check our our Newbie 101 section under "Coping" to insure that you are not accidentally getting glutened. . That will just extend your healing time!

flowerqueen Community Regular

Whilst I had bad symptoms before being diagnosed, I also had problems for a while after giving up gluten. It is the body's way of detoxing from what it perceives as poison (which it is to people with coeliac disease). Hang on in there, it will improve soon. I believe that it can effect any part of the body including the skin, as after all, it is the largest organ of the body.

Zebra007 Contributor

I can relate.   I have had a nasty rash on and around my face for quite some time and once I cut out coffee it dropped from a level 10 to a level 4, so I knew I couldn't drink coffee, but I also knew I was still taking something else that my body was not happy with, and so I cut out  Almond Milk that many people buy as it had a couple of suspect additives, and within 2 weeks the rash has completely gone..

 

BUT I have another issue similar to yours, and that is a reddish blotch on my forehead that comes and goes, and I have a few tiny little red itchy spots that crop up around my hairline, and so at the moment I am trying to figure out what the cause of that is, I am pretty sure it is something else I am eating which I have missed for now.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,699
    • Most Online (within 30 mins)
      7,748

    RelievedP
    Newest Member
    RelievedP
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
    • deanna1ynne
      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article!
    • knitty kitty
      Have you tried a genetic test to look for Celiac genes?  No gluten challenge required.  
    • knitty kitty
      Hello, @ElisaAllergiesgluten, Have you tried going on a low histamine Paleo diet like the Autoimmune Protocol diet?  A low histamine AIP diet would help your body rid itself of the extra histamine it's making in response to allergies.  Are you Celiac as well?   Since we need more thiamine when we're stressed, adding Benfotiamine, a form of Thiamine Vitamin B 1, can help the body calm down it's release of histamine.  Benfotiamine improves Sailors' asthma.  
    • knitty kitty
      Don't skimp on the gluten daily while undergoing the gluten challenge!  
×
×
  • 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.