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Confused New Celiac
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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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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.

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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.

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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

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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.

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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.

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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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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.

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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

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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

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Well just to add more confusion-

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

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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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