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

Does Any Of This Sound Familiar?


OzGirl

Recommended Posts

OzGirl Rookie

Hi to everyone! After visiting the doctor about 6 months ago, he diagnosed IBS, ran blood tests for Celiac (which showed nothing) and told me to stay off gluten if I thought it would help me! All of which seemed way too confusing and I have continued on with life as per "normal". Since then I have been incredibly tired, lacking energy, feisty, lacking in tolerance, with all the IBS symptoms thrown in. I returned to the doctor this week because my exhaustion had turned into muscle weakness, my joints are aching, I am very hot of a nighttime, and the most disconcerting thing; after eating, I feel like my face swells (doesn't appear it though). The doctor ran more blood tests and announced me to be in perfect health! He asked if I was stressed/ depressed and offered anti depressants! (An offer I declined). I know that the logical thing is to go gluten free however most of my symptoms could be anything. I am on the "too heavy" side and don't have to make mad dashes to the loo. Is there anyone out there who experiences the face swelling thing? As i said, it isnt noticable, and is only a sensation (I'm assuming). Any thoughts would be appreciated as to my next move! ...Thanks.


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



Celiac.com Sponsor (A8-M):



Guest nini

yes I experienced the face swelling.

Please try the diet. Give it a good effort for at least 6 months before you decide if it's not helping. Your Dr. sounds to be wise in this regard. Keep in mind the testing is still not as reliable as the medical community would like us to believe. If it's positive there is no doubt, but when the tests are negative, it only means NOT POSITIVE... in my humble opinion, there is a lot more to gluten intolerance than just Celiac, and the testing hasn't caught onto this yet. Positive dietary response is the best way to tell if you are having a problem with gluten or not. And it certainly sounds like you could be, so it's worth trying the diet 100% no cheating for 6 months and then decide how you feel. The gluten-free diet can be a very healthy and inexpensive diet if done right. Stick with a diet of foods that are naturally gluten-free. Fresh fruits and veggies, clean unadulterated meats, nuts and beans, simple grains like rice and quinoa, buckwheat, amaranth, tapioca... on and on...

rinne Apprentice

Oz Girl, welcome, I have a history of digestion issues and for the past 15 years have been on the round side with C as the main problem. It was only this winter I got sick enough to melt and lost 35 pounds. I don't advise waiting to take up a gluten free diet because if gluten is the issue you will only get sicker and going on a gluten free diet now will give you the answers you need. By the time I got sick cutting out gluten was only the beginning, I can't eat dairy now either, and a number of other foods.

Sounds like you have a great doctor.

OzGirl Rookie
Oz Girl, welcome, I have a history of digestion issues and for the past 15 years have been on the round side with C as the main problem. It was only this winter I got sick enough to melt and lost 35 pounds. I don't advise waiting to take up a gluten free diet because if gluten is the issue you will only get sicker and going on a gluten free diet now will give you the answers you need. By the time I got sick cutting out gluten was only the beginning, I can't eat dairy now either, and a number of other foods.

Sounds like you have a great doctor.

I don't think I'm replying correctly but here goes ! Thanks, to you both for your comments. There's just one other thing that I'd like to run by anyone who's listening out there. Can gluten bring on immense feelings of stress? I have been under stress from work which I do acknowledge, however it seems to me that my body is going into an overdrvive sensation of being so twitchy it's almost unbearable after I eat. My neck feels so stiff it feels like it's going to snap off, and I almost get a feeling of panic - frenetic uncoordinated type body twinges. Last night my face felt so tense, that my gums were aching. Could this be a response to gluten/wheat? thanks.

par18 Explorer
I don't think I'm replying correctly but here goes ! Thanks, to you both for your comments. There's just one other thing that I'd like to run by anyone who's listening out there. Can gluten bring on immense feelings of stress? I have been under stress from work which I do acknowledge, however it seems to me that my body is going into an overdrvive sensation of being so twitchy it's almost unbearable after I eat. My neck feels so stiff it feels like it's going to snap off, and I almost get a feeling of panic - frenetic uncoordinated type body twinges. Last night my face felt so tense, that my gums were aching. Could this be a response to gluten/wheat? thanks.

I don't know if this could be a response to gluten/wheat. You could try not eating gluten/wheat and see if it helps. To me that would be the easiest thing to try.

Tom

Felidae Enthusiast
Can gluten bring on immense feelings of stress? I have been under stress from work which I do acknowledge, however it seems to me that my body is going into an overdrvive sensation of being so twitchy it's almost unbearable after I eat. My neck feels so stiff it feels like it's going to snap off, and I almost get a feeling of panic - frenetic uncoordinated type body twinges. Last night my face felt so tense, that my gums were aching. Could this be a response to gluten/wheat? thanks.

I personally think it could be the gluten. I didn't realize that gluten was causing my anxiety and extreme worrying until I went off gluten. I am a very calm person now; it's really amazing. I lost all of my exam anxiety and little things that always bothered me stopped after being gluten-free for awhile.

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.