Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

shirleyujest

Still Wondering If It's Celiac Or Allergy

Rate this topic

Recommended Posts

Would appreciate receiving your thoughts on my status. Negative blood test but lab only tested 2 of the 4 markers. This left open the possibilities of celiac disease or gluten intolerance/allergy. I opted to skip the biopsy. (chicken :o) Decided instead to go gluten-free, see what happened.

Am now two and a half months gluten-free. IBS gone (that was my last symptom to manifest, just in the past 6 mos-1yr). Stamina building up slowly. Capable of taking one-hour walks 3x/week after several years of disabling exhaustion. Still have some loss of sensation in hands, still have ataxia but not as horrible lately, takes more to trigger. After years of cognitive problems and having a hard time focusing even enough to finish a novel, starting to read voraciously. Still lots of muscle/joint pain. Still get stressed somewhat but it takes a little more to throw me off than before going gluten-free.

Only supplements I added at the time I really suspected celiac disease and went off gluten were Vit. D and B12. All other supps I'm taking now I also took prior to gluten-free -- iron, calc/mag, antioxidants etc.

Also -- fingernails are growing like crazy after chipping at the quick for 10 years. They are painted red as I type. :P

Is there any way my problem could possibly be gluten allergy/intolerance as opposed to celiac disease, and I'm reacting this way because of the vit. D and B12? It seems to me it's a fairly dramatic change. Is it possible it's "just" an allergy?

I realize I may never have a precise answer... but thank you for your opinions on whether it's quacking like a celiac duck... or if jury is still out.

My original plan was to go gluten-free 3 months, then return to old eating habits for a day or two, see what happens. (I may still do that but feel so much better may wait until the 6 month mark; I honestly have no desire to eat the old way.)

Share this post


Link to post
Share on other sites

I still had muscle aches for a while after I went gluten free. I don't remember when it stopped. Although, I did notice the last time I took a long walk (about 3 or 4 miles) I didn't have the usual muscle cramps in my legs like I usually do. I have been gluten free for 3 months now and I can finally exercise without all the pain.

Share this post


Link to post
Share on other sites

You do sound like one of us. You would need to go back to eating gluten for from 6 weeks to 3 months for testing for celiac or gluten intolerance. An allergist can do skin prick testing for a true allergy but an allergy would not cause nervous system involvement that you have.

With the ataxia, have they done an MRI on you? With gluten ataxia many times we have brain lesions that are referred to as UBOs or unidentified bright objects. Unfortunately in the US some neuros are still clueless that those are diagnostic of celiac disease. I would have been diagnosed years before I was if not for that.

Something that may help with the nervous system involvement is sublingual B12. It will help the nerves heal faster and help them to fire correctly. Make sure the B12 is sublingual and gluten free.

Some believe gluten intolerance to be a precursor to celiac or celiac that has not yet attacked the small intestine. For some of us the impact on other body systems seems to occur before the gut symptoms become severe. Your body is making antibodies when you are intolerant or celiac. Allergic reactions are histamine reactions and while we can have both they are different.

Share this post


Link to post
Share on other sites
You do sound like one of us. You would need to go back to eating gluten for from 6 weeks to 3 months for testing for celiac or gluten intolerance. An allergist can do skin prick testing for a true allergy but an allergy would not cause nervous system involvement that you have.

With the ataxia, have they done an MRI on you? With gluten ataxia many times we have brain lesions that are referred to as UBOs or unidentified bright objects. Unfortunately in the US some neuros are still clueless that those are diagnostic of celiac disease. I would have been diagnosed years before I was if not for that.

Something that may help with the nervous system involvement is sublingual B12. It will help the nerves heal faster and help them to fire correctly. Make sure the B12 is sublingual and gluten free.

Some believe gluten intolerance to be a precursor to celiac or celiac that has not yet attacked the small intestine. For some of us the impact on other body systems seems to occur before the gut symptoms become severe. Your body is making antibodies when you are intolerant or celiac. Allergic reactions are histamine reactions and while we can have both they are different.

Thank you for responding ravenwoodglass and helping me play detective. I did have at least one brain MRI a couple years ago and the neuro said it was normal. Think I'll phone him and ask if there were UBOs -- I'd never heard of that. The detailed information here never fails to astound me. I appreciate your corroborating that many with celiac disease have other symptoms impacted before the gut. That's one thing that's puzzled me is not realizing how common the "out of order" symptoms.

The only sublingual B12 tablets at my local health food store had lactose which I can't do. So I bought liquid (Now brand), and I hold the liquid under my tongue for a minute before swallowing. When this liquid gets low I'm going to get sublingual tablets off the internet. Meanwhile maybe I'll take it twice a day.

Share this post


Link to post
Share on other sites
I still had muscle aches for a while after I went gluten free. I don't remember when it stopped. Although, I did notice the last time I took a long walk (about 3 or 4 miles) I didn't have the usual muscle cramps in my legs like I usually do. I have been gluten free for 3 months now and I can finally exercise without all the pain.

Thank you for sharing Daphniela... glad you are seeing such improvements!

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • June 19, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


    • July 08, 2019 Until July 09, 2019
      0  
      14th Euro-Global Gastroenterology Conference happening in Zürich, Switzerland during July 08-09, 2019. We are expecting more than 300 attendees representing from more than 40 countries who would be sharing their experiences and expertise around the world Theme: “Future Perspectives and shaping trends in Gastroenterology”
      You may learn more about our congress by visiting our website: https://europegastroenterology.gastroconferences.com/
      Tracks
      Microbiota and diseases|Acid Related Diseases|Helicobacter Pylori Treatment|Therapeutics targeting Microbioma|Advanced Nutrition and Dietetics in Gastroenterology|Inflammatory Bowel Diseases|Clinical Advances in Liver Diseases|Gastrointestinal Disorders and Drug Delivery|Obesity and Treatments|Gastrointestinal Pathology|Neuro Gastroenterology and Motility disorders|Pediatric Gastroenterology, Hepatology and Nutrition|Gallbladder and biliary tract Diseases|Latest advances in Gastroenterology treatments|Endoscopic Innovations in Gastroenterology and surgery|Clinical and Radiographic Gastrointestinal Abnormalities|Functional GI Disorders|Changing Trends in Etiology of Liver diseases|Epigenetics of gastrointestinal diseases|Bariatric Surgery|Gastrointestinal Radiology and Imaging|Developing treatment for Viral Hepatitis and Fibrosis of Liver|Emerging Trends in Clinical Research of Liver diseases|Hepatitis B treatment Patterns|Therapies in Pancreatic cancer|Diabetes and hepatocellular carcinoma|Intestinal Metaproteomics and Type 1 Diabetes
      Conference Benefits
      ·         CME Credits  
      ·         CPD Credits
      ·         Research publication in proceeding book
      ·         Abstract publication in associated online journal
      ·         DOI by Cross-Ref
      ·         Online speaker webpage
      ·         Workshops and Symposium
      ·         Certificate for participation and attendance
      ·         Young Researchers Forum and Posters Award for Students
      ·         B2b and Networking meetings
       
      Program Director
      Sophia Williams
      Gastroenterology 2019 | Zürich | Switzerland
      conferenceseries.com https://europegastroenterology.gastroconferences.com/
      E-mail: williams.sophiaa@yandex.com
      Whatsapp us : +442382146717
×
×
  • Create New...