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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!

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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. :)

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    • NanceK
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      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?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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