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. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    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
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.