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glutenewbie

Inconclusive Tests

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Hi everyone,

I'm new to this Celiac forum. I've been having major symptoms for the past 6 mos. But I've struggled with mood disorders and joint pains for years that could be related. I started off having diabetic like symptoms. I was really lightheaded and thirsty all the time. I had a glucose tolerance test and found I had kind of high blood sugar, but not diabetic. So I started cutting back on sugars, and found that that was my problem, I was sugar intolerant. But even after cutting out all refined and cane sugars (and eating minimal fruit) I was still having problems. I started having digestive difficulties (diarrhea, etc.) a couple months ago. I've read that gluten intolerance can lead to other food intolerances. (I also have problems with dairy and eggs.)

My GP finally did a blood test for me for Celiac in June. It came back positive. Then I was referred to a GI doctor who scheduled me for an endoscopy and biopsy. I tried to load up on gluten 2 weeks before the test, but had been cutting back on it before then. My biopsy came back negative. So the docs can't confirm that I have Celiac. But I know that I was feeling a lot worse when I had to load up on gluten. The tingling and weakness started coming back in my right foot again, I felt like I had the flu since I was so weak.

So anyway, I was just wondering if it's still possible that I could have Celiac even though my biopsy was negative? Any advice would be helpful!

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Absolutely. If you had positive blood tests, you are a Celiac. You don't need a positive biopsy to be diagnosed. The blood tests are very specific to Celiac Disease. A negative biopsy just means the damage isn't visible yet. But the antibodies are in your blood, and that is enough. You should definitely take this as a diagnosis and begin your Gluten-Free lifestyle. Good luck.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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that's exactly what happened to me...i don't have the official diagnosis but i'm slowing coming around to realize it doesn't matter. i'm gluten free and feeling better every day.

this forum is a fantastic resource - search around, ask questions, don't be shy! you'll find that many people on here know more about Celiac than most doctors do.

if you're looking for a good book on the disease, try "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green is also a great source of info. i read it as soon as i suspected Celiac.

good luck and start your gluten free diet right away! stick with simple, naturally gluten-free foods at first. you may also need to cut out dairy for a few months until you heal.


5/23/2008 - blood positive for antibodies

6/24/2008 - negative biopsy

8/11/2008 - DQ2 gene present

7/1/2008 - gluten-free

(and dairy-light until 12/1/2008)

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Welcome to the gluten free family. As stated if your blood test was postive you should get on the diet. You found a great place to ask any questions you need to. I hope you heal quickly.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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My GI doc told me that 1 out of 5 people test positive for the Celiac antibodies, but don't have the disease. He says the blood tests aren't 100% accurate. Should I believe him? I'm going gluten free anyway, but I'd like a confirmed diagnosis. I don't think I can afford the enterolab tests.

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Some doctos say a positive antigliadin test may be inconclusive, but a positive tissue transglutaminase, or endomysium antibody test are very very specific.

Even the antigliadin test does mean you are gluten intoleranet, and new research that followed relatives of diagnosed celiacs shows that the antigliadin test is the firstst to be positive, and that after some years the ttg test will be positive.

Why wait some years to ruin your health?

And, about 40 % of the population are gluten intolerant, not just the 20% your doctor comments on.

You can always get the gene test and the fecal test for gluten intolerance done by enterolab. but they cannot diagnose celiac.

Dr. Ford on the antigliadin test (the one your doctor says means nothing....) :

http://www.doctorgluten.com/

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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My GI doc told me that 1 out of 5 people test positive for the Celiac antibodies, but don't have the disease. He says the blood tests aren't 100% accurate. Should I believe him? I'm going gluten free anyway, but I'd like a confirmed diagnosis. I don't think I can afford the enterolab tests.

Your GI is only considering the end stage of total villi destruction to be diagnostic. Even though biopsies are often a false negative. If he biopsied the wrong place the damage can be missed as it can be spotty in the beginning and you do have 22 ft of small intestine. The likely reason for 1 in 5 testing postive is that 1 in 5 are celiac but just haven't gotten to that end stage yet or have other systems that are being destroyed faster than the gut. I am so glad you have decided to just go gluten free and regain your life. You don't need a doctors permission for that.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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So you feel better off gluten, felt worse loading up on it and according to your GI Doctor have a 20% chance of not having it with a POS blood test. That means you have an 80% chance of having it. Look at your results and the odds.....you gotta ask yourself......Do I feel lucky?

Because if you choose to keep eating gluten and you are Celiac......you are asking for a lots of other health issues as you go.....thyroid, diabetes, cancers......


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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