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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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