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

Doctor/dietician Appt Tomorrow...

Lilypad517

By Lilypad517
in Coping with Celiac Disease

Recommended Posts

Lilypad517 Rookie
Lilypad517
Posted

Hello all. I am pretty new here. I was diagnosed with biopsy confirmed celiac a couple weeks ago, and my follow up appointment as well as a meeting with a dietician is tomorrow. I am very nervous, but hopeful for more information about my individual needs. I have been gluten free for 3 months, and feel better. However, I was still getting glutened frequently despite careful research and diligence to a gluten free DIET. I say it like that because my md suggested i check my daily medicines and voila! Gluten. Every day. For the past year I have been on them. I got them changed last week and feel amazing. My only complaint is severe indigestion after I eat. Like my stomach doesn't move the food out as quickly as it shoud, leading to fullness, burping like an old man. It doesn't feel like a gluten attack, those knock me out and put me in the bed for days! I hope it is just my body hasn't healed yet.

Any advice for my appointments? This has been the most excited about it I have been since diagnosis because I will FINALLY get some answers! Thank you all, browsing this board has been helpful in so many ways!

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

Celiac.com Sponsor (A8-M):


Booghead Contributor
Booghead
Posted

No advice here, but good luck! B)

bonnie blue Explorer
bonnie blue
Posted

Hello and welcome, after reading this, your symptoms, the indigestion, fullness, and burping, talk to your doctor about gastroparesis (sp sorry) or slow stomach. They do have a very simple test for this, and basically you eat smaller meals 6 times a day, and they put you on a PPI for the indigestion. Again please just an observation, but be an advocate for your health. I hope all goes well for you, let us know how it all comes out. :)

Lilypad517 Rookie
Lilypad517
Posted
  • Author

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

bonnie blue Explorer
bonnie blue
Posted

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

Again just a suggestion, my sister-in-law has this and she is basically maintaining a good lifestyle with the dietary changes. And if your not having your regular gluten side effects I wouldnt think that you are getting gluten in your diet. Talk to your doctor about this, and your dietician they should be able to help you out. Good luck and again let me know how it turns out.

mushroom Proficient
mushroom
Posted

It could just be a combination of taking time to heal, and slow motility. It could also be that our pancreas is not producing enough digestive enzymes, and an enzyme supplement might help with this.

Make sure that your doctor is aware that he needs to check your nutrient levels if he has not done so already - things like Vit.D, B12, folate, iron/ferritin, potassium, magnesium. Also your thyroid function. These can all be affected by the malabsorption of celiac disease.

Good luck with your appointments. :)

Archived

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

Go to topic listing

  • 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. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags

      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources. I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    2. KelleyJo
      - KelleyJo commented on Scott Adams's article in Latest Research
      4

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      When I was diagnosed in 2016, I was told I had probably had it at least 30 years. I also have lactose intolerance and IBS, so I'm not certain which symptoms were which in the early stages. I have osteopenia because of it. I have issues with inflammation. I was only diagnosed with the IGA blood test. But there was such a marked difference when I went very...
    3. Jefferson Adams
      0

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can...
    5. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,370
    • Most Online (within 30 mins)
      7,748
    Susan Blodgett
    Newest Member
    Susan Blodgett
    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

    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
×
×
  • 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.