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Heather359

Pinned: Help! Negative Biopsy, What Is Wrong?

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Hi Everyone,

I am know here. My son for 6 years has been diagnosed with acid reflux. A year agao he was sent to a gastro specializist. He changed is reflux meds. It seemed to work but about 3 months ago he stated eating less and complaining that he belly hurts. Everytime he eats he is in the bathroom. I called the specialist and he had him come in for a scope. He wanted to look at the esaghugas but when he got in there he said that his intestance was a mess, no villi. He told me it was Celiac. He told me he took a biopsy and to call in a week and start a gluten free diet. Today I called and he had a negative biopsy. Can this happen? The nurse told me to continue the diet and they would do some bllod work next week. He is still complaining about his stomach but not as bad. Does it take time to heal? HELP?

Heather :(

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Celiac.com Sponsor (A8):

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Hi Everyone,

I am know here. My son for 6 years has been diagnosed with acid reflux. A year agao he was sent to a gastro specializist. He changed is reflux meds. It seemed to work but about 3 months ago he stated eating less and complaining that he belly hurts. Everytime he eats he is in the bathroom. I called the specialist and he had him come in for a scope. He wanted to look at the esaghugas but when he got in there he said that his intestance was a mess, no villi. He told me it was Celiac. He told me he took a biopsy and to call in a week and start a gluten free diet. Today I called and he had a negative biopsy. Can this happen? The nurse told me to continue the diet and they would do some bllod work next week. He is still complaining about his stomach but not as bad. Does it take time to heal? HELP?

Heather :(

Hello and welcome!

sometimes a biopsy could be negative because it is not done like it should be. I've read that there can be a false negative because the doctor took samples from the wrong parts of the intestine (I don't have the intention to accuse your doctor. Just told you what I've read..). For sure a positive biopsy is positive and a negative is nothing. I am not a doctor so I don't know if there are other diseases that destroy the villy....But celiac definately makes that damage.

And here are the happy news. If your little boy is celiac, when he starts the gluten-free diet his villy will be brand new! Almost every patient responds to the gluten-free diet, and the good thing about celiac is that the whole damage is like it never happened. This can take some time. For me it was 3 weeks until I started feeling great.Now after 7 monts my villy is SUPER. For others it was months or year or days....But the pain stops almost right away. Any way I am not a doctor, I am just trying to write down some experiences or thoughts. Maybe he is lactose intolerant, have you checked that?

Hope this helped you a little bit.....I wish your son will get better soon.

Meline


Celiac September 2007

Graves disease June 2008

Candida overgrowth / started treatment November 2008

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Welcome aboard!

It took many of us months to figure out this diet completely, Perhaps your son's diet still includes hidden gluten? Many cereals, soy sauces, deli tuna salads, ice creams, rice cakes, etc. contain gluten.

ALso, if he has no villi, he should avoid all milk products until his intestines heal, which can be several months. The villi are what produce lactase, which is what breaks down lactose. And many celiacs react to casein (the protein in milk) rather than lactose, and have to avoid milk, period.

The biopsy is considered the gold standard of celiac diagnosis--but keep in mind they only take a few 1/4" samples out of 22 feet of intestine. Villi damage is often patchy, and he just might have biopsied a bunch of unaffected areas!

I would keep him gluten-free and milk-product-free, (not lite, but absolutely free) and see if he does feel better.

That said, there are other things that can cause villi damage, such as severe bacterial infections, and even Lyme disease. There are a couple of threads on this board with a lot of info on things like Lyme Disease, mercury toxicity (from vaccines and dental amalgams, and other sources), candida infections, and other overwhelming things. If your son does NOT get further relief from a really strict gluten-free diet (that also does not include gluten-free breads, cakes, cookies, etc. during the first few weeks until his tum heals, as those can be very harsh on a damaged tummy ), then you might have to keep searching for answers.

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Daughter had a negative biopsy too, after the doctor who did the scope could see typical changes when one is celiac, he even called the others over to see when doing the scope. Three samples were taken, and only one was looked at by the pathologist wh said it was negative. .......

She did get a diagnosis after all, because of all the symptoms and because she dramatically got better off gluten.

Doctor said pathologists are known to be idiots. (some of them)

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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