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

2Nd Doctor Trip,celiac Symptoms Again Need Opinions


Tiredsean

Recommended Posts

Tiredsean Explorer

Hello all, Im going back again to doctors Friday after another episode need opinions. I was doing pretty good since my last body episode right after Xmas.The only symptom I retained was neck tension and shoulder tension.My cold feet,shortness of breath and heart palpatations were gone.I only had an actually head cold that's about it.Then this Friday I ate a huge plate of spaghetti. About an hour later I crashed hard,became really really tired and fell asleep.Saturday I woke up but had a bad sleep, felt nervous feeling while sleeping.I then noticed I had cold hands and feet plus ear ache and muscle tension but worse.I also noticed my hips. Hurt,butt muscles ached,and my ache under left ribs was back. So I didn't do much Saturday or Sunday and took Monday off cuz I was tired again and constipated.Today my feet weren't as cold or hands, and only this morning i had shortness of breath which cleared up after pounding down water and fruit.I also had more strength today not as tired.It seems to me ( this is my opinion), that everytime I back off gluten and then reingest its 10 times worse?? Make sense? Also how long should it take for my vile to heal so my muscle tension would go away or deminish ? If this is celiac my god how bad have some of your reactions been? Are mine worse than normal? I'm going back to docs Friday I need to know whats going on! Sooooo many tests all neg so far


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Have you had celiac testing done? Thyroid testing? not just a TSH for thyroid!

Tiredsean Explorer

Have you had celiac testing done? Thyroid testing? not just a TSH for thyroid!

I had the thyroid tests t-4 and tsh apparently both normal ? Ill be asking for my physical results(paperwork Friday) .Also iron and vitamin deficiencies however not sure which ones? Same for red blood cell,white blood cell, urine test for liver, and diabetes.They also checked me with camera down my throat and nothing. Symptoms I've always had since my teens was either constipation,or overdrive like going excessively.Heart burn A lot!! Since my 20's always had tums or Rolaids.And for the past 7 years or more random left ear ache.And heart palpatations. I've had stomach specalists check me , heart specalists running EKG and sonogram.Mris of spine and shoulder ,numerous X-rays .So much blood work, ENT specalist etc.I seem to have chronic sinus inflammation.I had allergy testing ( soy,hazzlenut,peanuts,pollen,dust mites,pollen,apples) I also had a gluten test done ( not celiac) came back negative. Can I ask you how long your symptoms last when you ingest gluten? Days/hours /week? And are they severe like mine above?

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. - julie falco replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Schar's products contain wheat!

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

    3. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

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

    • Total Members
      133,603
    • Most Online (within 30 mins)
      7,748

    Dale S
    Newest Member
    Dale S
    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

    • julie falco
      thank you that is good to know that it is safe for celiac people
    • Jmartes71
      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
×
×
  • 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.