Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Desperate! Exhausted! Upset Stomach! And Overwhelmed!


That GF Girl

Recommended Posts

That GF Girl Rookie

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):
Holidaily Brewing Co.
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
GliadinX


Lisa Mentor

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

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

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

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

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.


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,709
    • Most Online (within 30 mins)
      7,748

    Mali
    Newest Member
    Mali
    Joined

  • Celiac.com Sponsor (A20):
    Holidaily Brewing Co.


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Authentic Foods



  • Upcoming Events

  • Posts

    • trents
      Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease.
    • QueenBorg
      Yes. I have not been tested for celiac. It took forever to get diagnosed with Fibromyalgia. lol. I have an appointment with my regular GP later this month and will convey my findings on improved symptoms and see what his thoughts are. Thank you. 
    • knitty kitty
      @Grahamsnaturalworld, It's never too late.   Have you been checked for Small Intestinal Bacterial Overgrowth?  SIBO can cause ongoing symptoms.  Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms.  The AIP diet can help with these by starving out SIBO bacteria and calming the immune system. Do you include dairy in your diet?  Casein in dairy can cause an autoimmune response the same as to gluten.  Have you been checked for lactose intolerance?  Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged.  AIP diet excludes dairy. Do you include grains in your diet?  Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms.  Some people with Celiac react to corn and oats.  The AIP diet excludes all grains.  Lectins in grains can be inflammatory and cause symptoms. Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant).  This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome.  The AIP diet excludes nightshades.   Are you on any medications?  Some medications can cause gastrointestinal symptoms.  Do you take any supplements?  Some herbal teas and supplements can cause digestive symptoms.  Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects. Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients can occur with continued symptoms.  Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms.  Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms.  Nutritional deficiencies can worsen over time as stores inside the body are depleted.   Have your doctors checked for all these?   I had a horrible time getting my symptoms under control.  I had to answer all these questions myself.  Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday. Interesting reading: AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review https://pubmed.ncbi.nlm.nih.gov/36137844/
    • Grahamsnaturalworld
      Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again.
    • trents
      Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
×
×
  • Create New...