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Got My Diagnosis!

Laurelf

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Laurelf Explorer
Laurelf
Posted

Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

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Gemini Experienced
Gemini
Posted
Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

It's one of the great mysteries of the modern world......why this disease will not be officially diagnosed until you have gone through enough testing to fill a month of Sundays! :blink: If it walks like a duck, quacks like a duck, guess what it is? Not that I am dissing NP's BUT you have had 2 DOCTORS agree on your results and that's rare enough these days. It sounds like the NP just doesn't know that much about Celiac in general.

Congratulations on obtaining a diagnosis and welcome to the club! You are now free to enjoy a stab at good health! :lol:

jststric Contributor
jststric
Posted

Because doctors in this country SUCK at knowing about Celiacs!!! Do they stop to realize that you are poisoning yourself so things will show up on their tests and you are miserable the whole time? Do they realize that the only real "cure" is to be gluten-free? Duh! It's not rocket science, but it seems to be for them.

ang1e0251 Contributor
ang1e0251
Posted

Two doctors trump one nurse practitioner. Yahtzee!! You have celiac disease!!

mbrookes Community Regular
mbrookes
Posted
Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

My blood tests were"inconclusive" but my gut was slick as an oil spill. Yep. That's celiac. Maybe the NP doesn't realize that the biopsy trumps the blood tests.

Quasior Rookie
Quasior
Posted

Theres like 5% of Coeliacs who never show positive bloods, or only show it some of the time. I'm one too. Go with the doctors results, you are coeliac! :D

troubleshooter123 Newbie
troubleshooter123
Posted

Yep. I was just diagosed last week. My sister and cousin have celiac, so I have had two bloods test over the past year and both were negative. I also have colitis so the GI Docs figured my symptoms were due to that. Finally, my primary care physician requested I get an EGD and voila, according to pathologist and my GI doctor, I very clearly have celiac and duodenitis. Already quit drinking three Monster energy drinks a day to stay awake. Have more energy. Hoping my ten other symptoms will go away soon.

John

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Laurelf Explorer
Laurelf
Posted
  • Author

John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."

Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?

Thanks,

Laurel

ravenwoodglass Mentor
ravenwoodglass
Posted
John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."

Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?

Thanks,

Laurel

Duodentitis can be related to celiac. With the increase intraepithelial lymphocytes and the statement 'no significant atrophy' which to me means that some atrophy was found but your villi are not totally destroyed all point IMHO to celiac. I would try the diet when all your testing for celiac is done.

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    • 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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      High DGP-A with normal IGA

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
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      By rei.b · Posted

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