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

Syptoms Worse After Being Gluten Free For 3 Weeks


AnnieZ

Recommended Posts

AnnieZ Newbie

I was diagnosed with Celiac disease May 27th and started immediately on a gluten-free diet. I have had severe diarrhea since June 2nd - over 2 weeks. No kidding, it's like I should be wearing Depends! It is definitely worse than before I went gluten free. Any clue why? Of course the first thing that comes to mind is that I'm still getting gluten in my diet, but I don't think that's the case. I have been vigilant about being gluten-free. I read how so many people feel better within a matter of days, and of course, want that to be the case for me. If you need more info (other symptoms, how I was diagnosed, etc. - just ask) Any feedback would be greatly appreciated!

Thanks, AnnieZ


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



Celiac.com Sponsor (A8-M):



Lockheed Apprentice

My body did a total purge about two weeks after I went gluten free. I craved pasta like there was no tomorrow and was so sick I thought it couldn't get worse. After a month I started to feel better and a year later when I finally could work a balanced diet again I felt fantastic (and dropped 25 lbs!)

So I would say keep with it, but I'm not a doctor. You might have something else going on too along with the celiac disease that is causing your problem. But I do recall the first month being absolutely miserable.

AliB Enthusiast

A lot who are Celiac/GI also have a problem with dairy. The enzymes responsible for lactose digestion are produced near the tips of the villi and when the gut is damaged, lactose digestion is impaired.

Yes it is possible you are still getting 'glutened' from hidden sources - after I had been gluten-free for 4 months I realised that I had been getting glutened all through from oats that I thought were safe but were probably contaminated. I hadn't thought about that! Prior to that I was still not well but assumed it was because my gut was so damaged and I was reacting to different foods so didn't realise that I was being 'glutened'.

A few weeks ago when I suddenly started to get a more obvious reaction I think my immune system had started to kick in properly, and my digestion had started to settle down more so it was more apparent.

Even thought I also dropped dairy at the same time as gluten (I knew I was also very dairy intolerant so I thought "in for a penny......"), and kept to a very simple, plain food diet, it still took several weeks before my digestion and stools settled down and actually changed several times which was a bit disconcerting. Now, it is fine and daily regular, although it gets a bit iffy if I get glutened or 'dairied'.

Try to be patient. The damage did not occur overnight and it will not heal overnight, but you should gradually see an improvement. My energy levels still go up and down but I am considerably better than I was. Annoyingly though I keep getting knocked sideways by viruses!

About 2 weeks after going gluten-free I suddenly got some energy - 2 days later I went down with a rotten virus and couldn't pick back up. Four months into it I have just been hit by another one. I really can't win!!!

mushroom Proficient
Annoyingly though I keep getting knocked sideways by viruses!

About 2 weeks after going gluten-free I suddenly got some energy - 2 days later I went down with a rotten virus and couldn't pick back up. Four months into it I have just been hit by another one. I really can't win!!!

I know what you mean about the sideways knocks. Fighting off the gluten for so long really does impair the old immune system and I seem to catch everything that is passing by. Had flu for three weeks over Christmas, felt good for a couple of days and then blam! acute bronchitis so I coughed for another three weeks. Just got over that and and felt good for a couple of weeks and my arthritis flared up so badly that I lost all body strength, couldn't even get off the john. Hurt my knee going through the contortions of getting up. Then, I tore a bunch of skin off my calf and had to keep my feet up for three weeks under threat of needing a skin graft, so that helped my knee too. Have been avoiding infections by staying in so that I am well enough to fly in a couple of weeks (when I'll probably catch something else on the plane) but a week ago lost a fight with my jammed front door. It threw me back into a little kidney-shaped table which fortunately splintered into tiny pieces or else I would have been worse injured. The physio is doing wonders on my back but since I got glutened over the weekend I am so gassy and bloated that I can't possibly lie on my stomach today!

I remember from my days of watching U.S. football a penalty called "piling on." That's what I feel is happening to me at the moment. Enough already! Except fpr those 2 weeks at the end of January I haven't felt good since going gluten-free. I want some rewards :P

lindajeaninsc Newbie

AnnieZ,

I had really severe stomache aches after I went gluten free (April 15, 2008). We finally figured out that my body had not had to "work" at digesting my food for so long, it needed baby steps. I was eating salads every day because it was so easy to pack for work.

So, I went lactose free, and only eat salad about twice a week. I have rice, quinoa and other grains, lots of cooked veggies, fruit juices and the milder fruits like bananas and applesauce and low fat meats has made the difference for me.

I do not feel wonderful, but no stomache aches or multiple BMs, either.

I have also found that gluten free lipstick, shampoo and medications are important and may be your next project! The lipsticks from the mineral cosmetic companies like Everyday Minerals and Glo Minerals are gluten free. Lots of the store brands are not!

Celiac is hard! But I keep telling myself that it will get better. The women in my support group all say 6 months to 2 years before it's really better. I have to trust in their experience! Go find a local support group, it can really make the difference for you. Hope this helps!

Linda

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    2. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    4. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
    • Jane02
      Thanks @Scott Adams. Do you know if Kirkland Signature supplements share facility and production lines with other products containing gluten?  I'm worried that I'll react to this brand just like I did with other gluten-free labelled supplement brands. 
×
×
  • 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.