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I Might Have Celiacs Disease

BigRoy

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BigRoy Newbie
BigRoy
Posted

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
ShayFL
Posted

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
Mtndog
Posted

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
TracyB
Posted
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
quentin
Posted

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
mftnchn
Posted

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

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      still struggling with cravings

      By wellthatsfun · Posted

      as my last post stated, i was diagnosed via endoscopy on the 14th of june. i have been eating amazing home cooked meals, luckily, mainly cooked by my boyfriend who is extremely careful about contamination (and is an incredible cook at that). however, i find myself in a mental rut still. being 18, this is the time in my life where i should be exploring things, going out, having fun. yet every corner i turn i'm tortured by the amazing smell of something i can't have anymore. the wonderful sight of such yummy foods. it's near torture. if my boyfriend and his friend who lives with us buy something i can't have, they'll usually eat it outside of the house or the car or wherever we are - which is greatly appreciated - but even seeing a burger or chips or a sausage roll in their hands guts me almost beyond repair. i just wanna have it again too. i miss it. i feel left out and it makes me very sad all the time. it's not their fault. they are allowed to eat whatever they want to, whatever their intestines will allow. it just stings, bad. and i feel so ungrateful given i basically have a private chef who is doubly the love of my life. but it's just so hard. i know i'll adapt. i haven't given up hope.i just wanted to vent. thank you for reading
    • RDLiberty
      Toothpaste question.

      By RDLiberty · Posted

      Thank you. I must have misinterpreted a study or something. Thank you for the clarification. Much appreciated. Almost three years into my celiac diagnosis and I'm still learning new things. 
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      Manitol and mri

      By RMJ · Posted

      I wasn’t clear, glucagon and gadolinium were intravenous. I drank about 5 cups of the prep during 45 minutes. I feel very tired now, probably partly because I was nervous, and partly because I had to fast for 6 hours beforehand and wasn’t very hungry when I got home.
    • nanny marley
      Manitol and mri

      By nanny marley · Posted

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      Manitol and mri

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      The solution I had to drink contained sorbitol and mannitol. I was in the MRI, lying on my back, for about 40 minutes. I was given glucagon partway through, and a gadolinium contrast agent. After I got home there was some diarrhea from the prep solution.
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