6 replies to this topic

[ChristineWas]

I have been extremely sick for two years and have had almost every potential symptom for celiac disease. After my dad was diagnosed and then when my blood tests strongly pointed toward celiac disease, we got very excited about finally being close to an official diagnosis. However, my EGD results came back negative.

I am so discouraged! I just want to know why I am sick. I was careful not to eliminate gluten from my diet before the EGD to avoid a false negative.

Are there other factors that can lead to a false negative?

[Bubba's Mom]

Yes. Damage can be patchy, so getting a sample for biopsy can be tricky. That's why they say around 8 samples is best. Also, the scope doesn't reach through the whole small intestine. You could have damage outside of the reach of the scope?
In addition, maybe your Ceiac was caught before you have noticeable damage? I hope so!
If your blood test was positive..go completely gluten free. You will avoid all of the nasty malabsorption issues and future diseases that come from an inflamed system.

[ChristineWas]

Thanks. I heard the GI docs talking about getting a biopsy in two places before they knocked me out, so that may be all they did. The silly endoscopy feels like such a waste of money now! (No insurance.)

I think your words may be all I needed to keep me on a gluten-free diet. Thank you! I have been feeling better since I cut gluten out (right after my EGD). I just really wanted that official diagnosis.

[rosetapper23]

One of the leading experts on celiac, Dr. Alessio Fasano, has spoken on this very topic many times and has written several articles in which he has challenged whether endoscopies should be considered the gold standard for diagnosing celiac. The reasons for this is that the scope may not reach the damaged area, there may not be enough damaged area to get a good sample, the surgeon is not skilled enough or experienced enough to know where and how many samples to take, and the pathologist may not be competent enough to determine whether a person has celiac or not (a recent study showed that pathologists at medical hospitals were better at detecting celiac; whereas, doctors at regular hospitals did not do so well). Dr. Fasano has pointed out that if you have positive bloodwork and/or a positive gene test, your symptoms resolve on a gluten-free diet, and the symptoms return when gluten is reintroduced, a diagnosis of celiac should be made. There are many doctors who will diagnose celiac without a positive biopsy. Others will diagnose celiac even without positive bloodwork.

When I arrived in the office of the gastro of my HMO after suffering from classic celiac and Dermatitis Herpetiformis symptoms all of my life, he apologized profusely for the missed diagnosis on behalf of all of the doctors I had seen over the years. He scheduled an endoscopy, but because my IV blew out and I bled like a fountain for quite some time, he refused to do the procedure, stating, "I'm 100% positive you have celiac; this procedure is unnecessary." So...I agree that you should go gluten free for the rest of your life. When you occasionally get glutened and become extremely ill as a result, you will know with certainty that you have made the right decision.

By the way, you might search for the articles that state that taking at least eight samples is required for a celiac diagnosis....and take them to your surgeons to request your money back on the procedure (at least, THEIR fees).

[ravenwoodglass]

You had positive blood tests, your father is celiac. You are celiac. No doubt.
I hope you are feeling better soon and you may find your GP gives you the official diagnosis once your symptoms have resolved and your antibody levels have dropped on retesting. Ask for them to be retested at 6 months to a year if your doctor doesn't suggest it himself. Be sure to also have them do full vitamin and mineral panels on you as many of us need to supplement for low iron, ferritin, B and D and more until we have healed.

[ChristineWas]

Rosetapper23, thank you for the information about Dr. Fasano. Very helpful and beneficial information.

ravenwoodglass, thanks for the tips. They run tests on my blood every time I go in so I actually am taking B and D supplements.

[frieze]

One of the leading experts on celiac, Dr. Alessio Fasano, has spoken on this very topic many times and has written several articles in which he has challenged whether endoscopies should be considered the gold standard for diagnosing celiac. The reasons for this is that the scope may not reach the damaged area, there may not be enough damaged area to get a good sample, the surgeon is not skilled enough or experienced enough to know where and how many samples to take, and the pathologist may not be competent enough to determine whether a person has celiac or not (a recent study showed that pathologists at medical hospitals were better at detecting celiac; whereas, doctors at regular hospitals did not do so well). Dr. Fasano has pointed out that if you have positive bloodwork and/or a positive gene test, your symptoms resolve on a gluten-free diet, and the symptoms return when gluten is reintroduced, a diagnosis of celiac should be made. There are many doctors who will diagnose celiac without a positive biopsy. Others will diagnose celiac even without positive bloodwork.

When I arrived in the office of the gastro of my HMO after suffering from classic celiac and Dermatitis Herpetiformis symptoms all of my life, he apologized profusely for the missed diagnosis on behalf of all of the doctors I had seen over the years. He scheduled an endoscopy, but because my IV blew out and I bled like a fountain for quite some time, he refused to do the procedure, stating, "I'm 100% positive you have celiac; this procedure is unnecessary." So...I agree that you should go gluten free for the rest of your life. When you occasionally get glutened and become extremely ill as a result, you will know with certainty that you have made the right decision.

By the way, you might search for the articles that state that taking at least eight samples is required for a celiac diagnosis....and take them to your surgeons to request your money back on the procedure (at least, THEIR fees).

Rose, great minds think alike! we shouldn't pay for that which we didn't get!