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 For Advice

CarolynV

By CarolynV
in Coping with Celiac Disease

Recommended Posts

CarolynV Newbie
CarolynV
Posted

Hi Everyone,

I'm newly diagnosed and have some questions. The main symptoms I have are neurological. Mostly what I experience is immense fatigue to the point where I need to be in bed most of the day. I have burning sensations and just muscle pain when I exert myself. My tongue even hurts at times. My doctor says that I am experiencing this because of the malabsorption. Do any of you here experience this sort of pain? Do you think that there is something else going on? I'm on a really strict diet that is obviously gluten free but also surgar, dairy and casin free. It's basically a diet for leaky gut. If this is just celiac disease, how long before I start getting better? My dr. also put me on the medication Lyrica to help me deal with the pain. I think it' helping some, but not much. I'm just so sad that I've lost my live. I have three young children and I really miss them. I can't even care for them anymore. Any advice would be appreciated. Thanks.

CarolynV

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

Hi! Welcome to the Boards!!! This is a great place to ask any questions or vent or whatever!

I had pretty severe exhaustion, too. I could still work, but after I got home at 2 pm, it was over from there. It took me a while to get over that, although I felt much better pretty quickly going gluten-free. You have only temporarily been set back, things will get better for you. Did your doctor also test you for any vitamin deficiencies? I started taking a regular multi, magnesium, and a good B complex. That seems to be what has made the final difference. But, I am still not back to my full energy yet. It took time for me to get this way, and it will take time to fix it. But I know that I feel so much better than I did 3 months ago, and it just keeps getting better. I don't know how long you have been gluten-free, but just give it some time. Things will start to look up!! ;)

Glutenfreefamily Enthusiast
Glutenfreefamily
Posted

I have neurological issues also. Mine are mainly bad sciatica, seizures, numbness in my right leg and foot. I also have nerve pain that seems to send them on heightened alert when Im having "D". I also use to get burning in my back from physical exertion. I am much better now, Im around 2 1/2 years gluten-free. I found I had many intolerances and leaky gut I believe. What helped me best was being gluten-free, soy free, and I couldnt handle fats at all. I had to go vegetarian and avoid nuts and oils too. Now I still cant eat soy, eggs, gluten and dairy but the other issues have subsided. Im still a vegetarian but I have tested meat and it doesnt bother me anymore at all I just choose to avoid it now. Probiotics I believe helped me alot too, I hope you get some relief soon.

Lux Explorer
Lux
Posted
Hi Everyone,

I'm newly diagnosed and have some questions. The main symptoms I have are neurological. Mostly what I experience is immense fatigue to the point where I need to be in bed most of the day. I have burning sensations and just muscle pain when I exert myself. My tongue even hurts at times. My doctor says that I am experiencing this because of the malabsorption. Do any of you here experience this sort of pain? Do you think that there is something else going on? I'm on a really strict diet that is obviously gluten free but also surgar, dairy and casin free. It's basically a diet for leaky gut. If this is just celiac disease, how long before I start getting better? My dr. also put me on the medication Lyrica to help me deal with the pain. I think it' helping some, but not much. I'm just so sad that I've lost my live. I have three young children and I really miss them. I can't even care for them anymore. Any advice would be appreciated. Thanks.

CarolynV

Carolyn,

My symptoms don't fit exactly with what you are describing, but I am absolutely certain that there are others on this board that can empathize with you. My own experience involves other kinds of pain that, despite being different in how they manifest themselves, are still symptoms of the same thing and have often left me wondering if they will ever leave.

I want you to know that a gluten free diet has proven beneficial for many, many people - and sometimes it is simply a matter of time, in finally getting that relief you so need. I want you to know that I have personally felt a lot of relief simply from eliminating soy and dairy from my diet. You are on the right track!!!!!!!!!! Please try to concentrate on the idea that you are working towards healing yourself; it may be difficult to see/remember that at times, but with every day you remain gluten free, I can tell you that you are taking a step forward.

In the meantime, please remember to use this board to vent/seek advice/comfort in the knowledge that there are so many people who are going through something similar to you.

*hugs*

RiceGuy Collaborator
RiceGuy
Posted

I second the magnesium suggestion. I also had intense, debilitating muscle aches and pains, and magnesium was like a miracle.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,203
    • Most Online (within 30 mins)
      7,748
    Sarahmegan
    Newest Member
    Sarahmegan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.