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I Might Have Celiacs Disease


BigRoy

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BigRoy Newbie

I was a pretty active 62 year old male except for the RA like symtoms that i've had for over 20 years. I have been on antiinflamatory drugs and have had 2 total knee replacements 10 years ago. Last year I was diagnosed with pnemonia and have not been the same since. I have been very fatigued and had trouble breathing. The Dr's have me on a CPAP machine. I sleep all the time. I have depression and don't want to leave my home.

I also started with a pain in the lower abdomen, and have been treated for Diaverticulitis after a Colonscopy procedure. I then had hernia surgery and started with diarreah. My GI doctor had me checked for C.Diff and other things. That has been all negative. He has given up and refered me to Dr Vanderveldt at the University of Miami Medical School. After a 1 1/2 hour meeting in which he went over the whole history including my parents medical history he said" I think you have Celiacs Disease". He had me go to the lab for tests including the Promethius Test, that has to be sent to California. I am awaiting his findings. I have another visit with him planned for the middle of November. Does this all sound like Celiac Disease?


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ShayFL Enthusiast

It could very well be. Hang tight and dont eat gluten-free yet. If the blood comes back POS, your Doc. will likely want a biopsy. You MUST be eating gluten for it to be accurate. So keep your regular diet, wait for the blood results and if you get a biopsy, start gluten-free as soon as the procedure is done.

I sure hope they find an answer soon. It is no fun to be a prisoner to your home.

Mtndog Collaborator

It definitely could be. I'm so sorry for everything you've been through. What Shay said is right- don't go gluten-free yet.

I had the Prometheus test- it was what confirmed I had celiac for me. I had the HLA DQ8 gene (the less common of the two most common genes for celiac) and a positive response to the diet even though I had a negative biopsy.

I hope you find out soon so you can start to feel well. Keep us posted!

TracyB Apprentice
It definitely could be. I'm so sorry for everything you've been through. What Shay said is right- don't go gluten-free yet.

I had the Prometheus test- it was what confirmed I had celiac for me. I had the HLA DQ8 gene (the less common of the two most common genes for celiac) and a positive response to the diet even though I had a negative biopsy.

I hope you find out soon so you can start to feel well. Keep us posted!

Love your warrior quote Mtndog - I copied and pasted it so I can show my son -it is so him!

TracyB

quentin Newbie

One of the main features of my gluten allergy is discomfort in the small intestines (mid-abdomen below the stomach). My stool color also gives it away, being pale if I've had gluten. These problems also seem to be worst when I have the latest virus going round because I recover when I'm virus free.

Sorry to hear of all your difficulties.

mftnchn Explorer

Just be aware that a gluten or wheat allergy and celiac are totally different but similar treatment--avoidance.

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    • KRipple
      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
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