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

Help!why Am I Feeling Bad Again?


SanteeBay

Recommended Posts

SanteeBay Rookie

Hi all,

I am getting a bit discouraged here. I have been gluten free for 2 months now. I noticed huge improvement belly wise in just a matter of a week and the bone and joint pain was considerably better. It now seems I am having more bad days than I am good. I have not intentionally ingested any gluten whatsoever. My belly troubles are okay but my bone and joint pain are getting worse along with fatigue. Is that normal to have a set back after going gluten free? Headaches are coming back also. I don't know if I am intolerant to any other foods. Does anybody have any ideas? Thank so much.

Melanie


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator

Melanie, I felt the same as you.

The beginning of the diet for me showed wonderful improvements, and I thought great, so easy, but somewhere along the line, a couple of months in, I was sliding back. I got a bit depressed with that, as I was sure I had been going down the right track with eating.

For me it was a mixutre of glutenings (I was not too aware of what I could eat as things looked gluten free, but you have to look beneath the surface and between the lines of all lables), other intolerances and healing.

It could be other intolerances, like peanuts soy and or dairy. There is no easy way of figuring this out, but eliminating them for a while could show improvements, and then bring back the items one at a time to see what you might be reacting to. It takes time and is not a quick answer and you will need a lot of patience and perserveance.

My major problem later on was the supply of water I was drinking at work. I know that sounds odd, but it might just have co-incided with me having healed, but the change was just like in the beginning of the diet when I noticed the most improvements.

Good luck, and I hope it is not another intolerances, as they are a pain as I avoid all peanuts and soy.

Cathy

Nancym Enthusiast

I think gluten was masking some of the other food issues I had, like with dairy. Now I listen very carefully to my body. When things start going haywire I know I have to tweak my diet. For instance, eating too many nuts or seeds gives me diarrhea. Just start experimenting and see if you can't figure out what it is that is causing you issues.

LisaJ Apprentice

Hi Melanie -

I also had this same problem. Finally figured out it was dairy - which is strange, because I don't ever remember having issues with it before I went gluten free. Dairy seems to be a very common problem around here :)

Hope you feel better soon

spunky Contributor

Just ending my first year gluten free, I can say the first half of that year went like a wild roller coaster ride: good, then bad, then good, etc. It seems anything can happen. I never figured it all out, but I am 100% better now, and even my "bad" days are really so much better than any few good days I used to have. Sometimes now, doing the simplest thing, walking the dog, for instance, I just sigh at what relief, how good I just feel all over by now.

But during the first several months I was pretty much up and down. I continued finding on and off tiny sources of possible glutening, here and there, and got more and more diligent. Also, I avoided (and still avoid) dairy, casein from "non-dairy" products (one of the big allergens in milk), and never did cut out other possible suspects, such as soy, nuts, etc., but I did cut way back for a couple of weeks at a time on and off.

I think it's possible that new intolerances may surface in some people during the first few months going gluten free. It seems these may be temporary, or may be forever: you just have to give it time and see what happens. Also, as you go along you may find new sources of gluten still sneaking in. Things didn't really start to predictably calm down with me until the 7th month. By the 8th month I took a chance, got sick and that lasted the whole 8th month and ruined it for me, and from then until now I have felt really great most days. I would give it time, watch everything: foods, additives, shampoos, evelope flaps, any possible source of gluten, and then keep an eye out for other foods that might seem to be bothering you right now. I found probiotics helpful during this time too.

SanteeBay Rookie

Thanks everybody. I thought you would all say to eliminate foods to see if that made a difference. I am clueless on which ones or one to start with. I had no idea that I even had Celiac! I went to the doc for fatigue and anemia! Do you know if I have other intolerances if they would make my body hurt even though my stomach feels great? It just seems strange that my stomach is doing so well yet it is my joints and bones are the ones hurting? I did have someone else tell me to take probiotics. Do you know if the ones they sell at Costco are okay? I don't think this is a gluten thing though because I am extremely careful in reading ingredients and never cheat. I was feeling so great when I first started I said that I would never eat gluten on purpose again. Now though that I am back to feeling like crap most days I am so tempted to go and have a Round Table Pizza!!!!!! YUM!!! Have you all tried the Kinninnik? pizza crusts? I bought some the other day but haven't tried them yet. Thanks for listening.

Melanie

Ursa Major Collaborator

Melanie, I find that all lectins cause me to have joint pain and extreme fatigue (not necessarily bowel and stomach issues at all, other than rice). And salicylates give me body aches, and also fatigue. So, you might want to eliminate all lectins for a while to see if it will help your joint pain.

For more information, follow the links in my signature. I hope you feel better soon.


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



Celiac.com Sponsor (A8-M):



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. - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      EMA Result

    2. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Have I got coeliac disease

    3. - mike101020 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      EMA Result

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

    • Total Members
      133,160
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @mike101020! First, what was the reference range for the ttg-iga blood test? Can't tell much from the raw score you gave because different labs use different reference ranges. Second, there are some non celiac medical conditions, some medications and even some non-gluten food proteins that can cause elevated celiac blood antibodies in some individuals. The most likely explanation is celiac disease but it is not quite a slam dunk. The endoscopy/biopsy is considered the gold standard for celiac disease diagnosis and serves as confirmation of elevated blood antibody levels from the blood testing.
    • Wheatwacked
      Vitamin D status in the UK is even worse than the US.  vitamin D is essential for fighting bone loss and dental health and resistance to infection.  Mental health and depression can also be affected by vitamin D deficiency.  Perhaps low D is the reason that some suffer from multiple autoimmune diseases.  In studies, low D is a factor in almost all of the autoimmune diseases that it has been studied in. Even while searching for your diagnosis, testing your 25(OH)D status and improving it my help your general wellness. Vitamin D Deficiency Affects 60% in Britain: How to Fix It?    
    • islaPorty
    • mike101020
      Hi, I recently was informed by my doctor that I had scored 9.8 on my ttgl blood test and a follow up EMA test was positive.   I am no waiting for a biopsy but have read online that if your EMA is positive then that pretty much confirms celiac. However is this actually true because if it it is what is the point of the biopsy?   Thanks for any help 
    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
×
×
  • 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.