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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
      New (possible) celiac diagnosis

      By trents · Posted

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    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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