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Confused New Celiac

jbern

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jbern Newbie
jbern
Posted

Please help! Has anyone ever heard of a Celiac having a positive biopsy result (described as "early stage Celiac Disease") and subsequent blood tests show negative results? I had the biopsy done first because I needed to have a colonoscopy and esophogeal endoscopy. I'm confused!!

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Guest nini
Guest nini
Posted

depending on what blood tests were done, yes, it's very possible. BUT... since you have a positive biopsy, don't worry about the blood test results because the biopsy is proof positive you have it. I'm usually not an advocate of the biopsy only because it can miss damage, but in your case since your biopsy was positive, there is no getting around it. You have celiac, period.

jbern Newbie
jbern
Posted
  • Author

If a biopsy is the "Gold Standard" for celiac disease results, what happens when your biopsy is positive but,

your bloodwork is negative? Nurse said I could still have celiac disease and to meet w/GI next week.

gluten-free for 3 days.

nettiebeads Apprentice
nettiebeads
Posted
If a biopsy is the "Gold Standard" for celiac disease results, what happens when your biopsy is positive but,

your bloodwork is negative? Nurse said I could still have celiac disease and to meet w/GI next week.

gluten-free for 3 days.

It was said that you were early stage celiac. It means that you probably hadn't had enough gluten to trigger the immune responses to show up, but the dr. doing the biopsy found proof of villi damage caused by celiac. You have it. How are you feeling now?

Annette

jbern Newbie
jbern
Posted
  • Author
It was said that you were early stage celiac. It means that you probably hadn't had enough gluten to trigger the immune responses to show up, but the dr. doing the biopsy found proof of villi damage caused by celiac. You have it. How are you feeling now?

Annette

Thanks for asking. I am feeling fine. My symptoms were the more subtle ones like anemia (recent) and IBS and depression for years. I am excited to see how I am going to feel.

KaitiUSA Enthusiast
KaitiUSA
Posted

Biopsy that is positive=CELIAC....biopsies can rule celiac in but can't rule it out. If it was negative than you could not rule it out and get the full panel of blood tests done and rely on that. When you have a positive biopsy it is for sure celiac.

If you would like some lists I would be happy to send some to you. They will help as a general guideline with foods and products.

Claire Collaborator
Claire
Posted

Pardon me for adding more confusion to a confusing subject but - doesn't casein also cause intestinal damage? One reason I have felt the so called ' gold standard' should not be.

I have had the intestinal damage - though it may be healed somewhat now. I haven't been tested for a long while. I do not have celiac - according to genetic testing

You figure it out! Makes my head spin! :lol: Claire

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floridanative Community Regular
floridanative
Posted

jbern - I saw a new GI this week. He said that 20% of his Celiac patients had normal blood tests results but positive biopsies. I was surprised by this statistic. Only one of my blood tests shows positive for celiac disease and it's barley positive. Regardless of what the biopsy shows, I'll go on the gluten-free diet and see how I feel and have the tTg test done again after 3 months.

Claire - thanks for mentioning that about casein as I hadn't heard that before. I'll have to ask my doc about that when I have my biopsy.

Jenn2005 Contributor
Jenn2005
Posted

My husband had a positive biopsy and negative bloodwork. He also had the biopsy done first and the bloodwork done later. We also followed up with the test kit from Enterolabs and he showed positive fecal antigliadin antibodies and had 1 Celiac gene DQ2 and 1 Gluten Sensitive gene DQ1. His symptoms were (and some still are) fatigue, nausea, stomach pains, D & C, Vitamin B12 deficiency, joint pain, brain fog and the list goes on.

Jennifer

aikiducky Apprentice
aikiducky
Posted

I don't have it right here, but I recently saw a statistic by a Dutch celiac expert saying that (this is from memory) only 40% of patients with slight vili damage (Marsh 1) have positive blood tests, Marsh 2 it's 60% or thereabouts and it's only the people with total vili damage where the blood tests are as accurate as they are advertised to be.

In other words, negative blood tests could just mean that you went to the doctor early...

Pauliina

nikki-uk Enthusiast
nikki-uk
Posted

Well just to add more confusion-

My husband had neg bloods-but massive villous atrophy!(?) :blink:

Karie Newbie
Karie
Posted
Biopsy that is positive=CELIAC....biopsies can rule celiac in but can't rule it out. If it was negative than you could not rule it out and get the full panel of blood tests done and rely on that. When you have a positive biopsy it is for sure celiac.

If you would like some lists I would be happy to send some to you. They will help as a general guideline with foods and products.

Kaiti,

Hi! I am new to this site and celiac. I am waiting on results from my biopsy, yet to be done on Jan. 13, but have had inconclusive blood panel. It would be great if you could share any info and lists with me. Thank you so much. Karie

kariestraub@hotmail.com

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
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