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Positive Biopsy But Negative Labs? Confused....plz Help

ER nurse

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ER nurse Newbie
ER nurse
Posted

I had an EGD with biopsies and have diagnoses of Eosinophilic Gastroenetitis and Celiac Disease. I then had labs drawn which came back negative. Do I have Celiac or not??

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happygirl Collaborator
happygirl
Posted

If you have a positive biopsy for Celiac, then you have Celiac. The biopsy is the definitive test for Celiac...often referred to as the 'gold standard.'

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rinne Apprentice
rinne
Posted

Hi. :)

I'm no doctor but an endoscopy is considered the gold stand for diagnosis by doctors because they can see the damage. Blood work may be iffy in terms of getting a positive diagnosis.

Are you in shock?

Are you okay?

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ER nurse Newbie
ER nurse
  • Author
Posted
Hi. :)

I'm no doctor but an endoscopy is considered the gold stand for diagnosis by doctors because they can see the damage. Blood work may be iffy in terms of getting a positive diagnosis.

Are you in shock?

Are you okay?

I received my diagnosis on Wed. I spent Wednesday and Thursday in shock. Friday I decided I needed to go grocery shopping and begin to deal with this. I am better now. I go for allergy testing tomorrow so hopefully I will have a plan to deal with the allergic issues going on. I am a 33 year old nurse with 7 kiddos in my life. This is very inconvient and totally changes our lifestyle.

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happygirl Collaborator
happygirl
Posted

Its a steep learning curve to adjust to the diet....but then it becomes more of a management issue, on a day to day basis. A good book to read is "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green of Columbia University.

Hopefully this will make your life easier with food label reading ---

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Some other good websites for your reading (besides this forum and www.celiac.com)

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiac.org

www.celiacdisease.net

www.gluten.net

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rinne Apprentice
rinne
Posted
I received my diagnosis on Wed. I spent Wednesday and Thursday in shock. Friday I decided I needed to go grocery shopping and begin to deal with this. I am better now. I go for allergy testing tomorrow so hopefully I will have a plan to deal with the allergic issues going on. I am a 33 year old nurse with 7 kiddos in my life. This is very inconvient and totally changes our lifestyle.

Wow, I come from a family of seven children and can relate to that being a huge thing to deal with!

You will figure it out. :) This is a great site, lots of support and information.

The great news is that you are young and finding out now you will prevent so much more damage to your health, in the end the inconvenience is minor to having your health. :)

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

It is extremely likely that you do have celiac.

However, there ARE non-celiac conditions that cause villi damage, including intestinal bacterial infections. But celiac would be much more more likely, especially if you were gluten-lite or gluten-free at the time of the blood work, or were on steroids (like prednisone), at the time of blood work, which screws things up for several months!

There is a lunch-packing blog that many of us here follow; www.lunchinabox.net. The blogger's hubby went gluten-free for 9 months because he was misdiagnosed (via biopsy) with celiac, and it turned out he had a very rare intestinal bacterial infection. They found out because he dutifully went gluten-free, and had NO improvement whatsoever (and he was very, very ill). So he went to the Stanford celiac clinic, where they re-did bloodwork, said, "hmm, not consistent with celiac," and looked further, finding the bacterial infection.

I'm not trying to give you false hope here. Just keep it in the back of your mind if you don't improve AT ALL on a truly 100% gluten-free (not gluten-lite) diet. And that lunchinabox has great lunch ideas, most of which are easily adaptable for gluten-free.

Your 7 kiddos probably ought to be blood-tested as well, even if they don't have symptoms, as the tendency is genetic.

Welcome aboard!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you seen the actual blood test results? Many time a very low positive will be reported as a negative. That said there are some of us that no matter how ill will not show up in blood work. The NIH estimates that number to be close to 30%. My not showing positive on blood tests delayed my diagnosis by many years. Very painful years. Do be sure to get all your first degree relatives tested. In my family everyone else did show up positive on the blood work but they had no where near the damage that I did.

Your in the right place to learn the ins and outs of the gluten free lifestyle. Welcome. I hope you are feeling better soon.

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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