Confused New Celiac

[jbern]

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!!

[Guest nini]

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]

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]

  jbern said:

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]

  nettiebeads said:

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]

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]

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! Claire

[floridanative]

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]

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]

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]

Well just to add more confusion-

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

[Karie]

  KaitiUSA said:

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