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

Desperate! Exhausted! Upset Stomach! And Overwhelmed!

That GF Girl

By That GF Girl
in Coping with Celiac Disease

Recommended Posts

That GF Girl Rookie
That GF Girl
Posted

Ok, This is ridiculous. Gluten Free for 9 mos. Found out some foods had gluten along the way. I cannot get rid of the exhaustion. I've had it for seems like most of my adult life. I've seen natropathic drs and no one really helped. I had such brain fog and stupor that I didn't know if I was coming or going so took myself off gluten and it was amazing. Stomach cleared up pretty well. The exhaustion never left. Very low cortisol levels through saliva testing plus wondering if I have other food allergies? Don't know if thyroid is in question but most drs say it's fine even with extensive testing. I've had it! I watch labels and it seems now whatever I eat bothers me. I've cut out gluten (9 mos) and sugar for 3 weeks. No chg. I thought that maybe the fresh veg juices might be giving me Diarrhea so I cut that out. I have had horribly low iron and ferritin issues in past and those are now up, maybe gut starting to heal. I also thought that i might have a casin allergy from what others say here. I use mot cheese and cottage cheese and yougert as mainstays in my diet so I can take in enough protein. I've cut all that out except for the butter for about a week and no difference. Stomach churns and upset and the more I worry about all this, the more upset it is! I'm losing weight, it was gradual at first but can't keep it on now. I don't have a huge appetite but it seems if I do eat more (like I used to ) I get an even worse stomach. Everyone comments on the wt loss and I feel like I don't even look well anymore. I'm discouraged BIG TIME! Sure appreciate your comments. I've had a colonoscopy and that was fine about 1 1/2 years ago. HELP!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Sorry that you are having a difficult time! :( Have you considered keeping a food diary?

I don't want to be redundant, but have you checked you meds, shampoos, lotions....work place environment, shared kitchen equipment.......gluten can be a tricky opponent. :angry:

That GF Girl Rookie
That GF Girl
Posted
  • Author

Yes, doing food diary too---I didn't think I'd have to be so cautious with the lotion. Waiting to hear back from Burts Bees on the lip balm but I think that's okay. We all eat gluten-free here - even though they don't have the problems but I just don't know! I'm gonna ditch the Rice Dream, I heard it has barley malt- very low - but that could be if I am super sensitive.

Sorry that you are having a difficult time! :( Have you considered keeping a food diary?

I don't want to be redundant, but have you checked you meds, shampoos, lotions....work place environment, shared kitchen equipment.......gluten can be a tricky opponent. :angry:

Lisa Mentor
Lisa
Posted

Yes, doing food diary too---I didn't think I'd have to be so cautious with the lotion. Waiting to hear back from Burts Bees on the lip balm but I think that's okay. We all eat gluten-free here - even though they don't have the problems but I just don't know! I'm gonna ditch the Rice Dream, I heard it has barley malt- very low - but that could be if I am super sensitive.

There is a NEW Sensitive Thread that has just started up. You might get some good suggestions over there. :)

Piccolo Apprentice
Piccolo
Posted

You are right to ditch the Rice Dream. Many people react to it. I don't get near it. You can get other "milk" to drink. Pacific has a rice drink and Hazelnut. You can get coconut milk also.

Susan

ravenwoodglass Mentor
ravenwoodglass
Posted

Yes, doing food diary too---I didn't think I'd have to be so cautious with the lotion. Waiting to hear back from Burts Bees on the lip balm but I think that's okay. We all eat gluten-free here - even though they don't have the problems but I just don't know! I'm gonna ditch the Rice Dream, I heard it has barley malt- very low - but that could be if I am super sensitive.

Do ditch the Rice Dream and also check all your toiletries for gluten ingredients. Also check all meds and supplements you take. With supplements you need to read all ingredients as some will be labeled gluten free but still have wheat and or barley grass and you will react to those.

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    2. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      What exactly are you taking from doterra?
    4. Xravith
      - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac specialist...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,461
    • Most Online (within 30 mins)
      7,748
    Shannon7274
    Newest Member
    Shannon7274
    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

    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      What exactly are you taking from doterra? 
    • Xravith
      Challenges eating gluten before biopsy

      By Xravith · Posted

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac  specialist " Dr Fernandez-Becker who down played my ailments and stated im not and then yes I am I even had one her " care team" ask my why do you want that diagnosis. UNMMMMM. I don't want it, its been my life confirmed in 1994.Menopause intensified extra sensitivity and medical has down played my sibo, ibs, CELIAC, now im having skin and eye issues. I thought help was available but its been a complete medical disaster. 
×
×
  • 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.