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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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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
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    • Scott Adams
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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