Biopsies Negative For Celiac Disease

[TRB]

I am actually really surprised that my biopsies were negative because the problems I was having totally cleared up by cutting out gluten. Except if I accidentally get glutened and then I have a horrible reaction ... 10x worse then when I was eating gluten regularly (is that normal?).

Doc is saying biopsies came back with mild gastritis ... but every reference I check says nothing about a gluten free diet as treatment for that.

So I'm wondering why I feel better without gluten when I don't seem to have any reason to be reacting badly to it in the first place. This is all very confusing.

[gfpaperdoll]

i would get a second opinion on the biopsies...

[Fiddle-Faddle]

Biopsies are totally hit or miss. You have 22 feet of intestine, and they biopsy 4 to 6 (if you are lucky) quarter-inch (or less) sections. That leaves, um, 21.9 feet left that they haven't biopsied--and celiac damage is often patchy and not visible to the naked eye.

Seems to me your doctor is being unusually intelligent in noticing that yes, gluten IS causing you a major problem.

Sure, he could tell you, "well, our biopsy didn't turn up any signs of celiac so you can safely eat gluten again," but WHY? So you can do more obvious damage?

The more damage one does by continuing to eat gluten when the body is already making antibodies against it, the more irreversible the damage is, and that includes neuro damage AND cancer.

I'm assuming that the doctor ordered the biopsy in the first place because your bloodwork showed elevated antibodies to gluten. That, coupled with your dietary response, is practically irrefutable proof that you should be on a gluten-free diet.

[TRB]

Biopsies are totally hit or miss. You have 22 feet of intestine, and they biopsy 4 to 6 (if you are lucky) quarter-inch (or less) sections. That leaves, um, 21.9 feet left that they haven't biopsied--and celiac damage is often patchy and not visible to the naked eye.

Seems to me your doctor is being unusually intelligent in noticing that yes, gluten IS causing you a major problem.

Sure, he could tell you, "well, our biopsy didn't turn up any signs of celiac so you can safely eat gluten again," but WHY? So you can do more obvious damage?

The more damage one does by continuing to eat gluten when the body is already making antibodies against it, the more irreversible the damage is, and that includes neuro damage AND cancer.

I'm assuming that the doctor ordered the biopsy in the first place because your bloodwork showed elevated antibodies to gluten. That, coupled with your dietary response, is practically irrefutable proof that you should be on a gluten-free diet.

My bloodwork did show elevated antibodies to gluten which is why I had the biopsy.

That explanation makes a lot of sense and I greatly appreciate you taking the time and explaining it to me. It would have been nice if the doctor had done so. I hadn't even considered the fact that the damage might not be throughout the intestine.

[Fiddle-Faddle]

What the doctors keep forgetting is that the damage doesn't HAVE to be in your intestine.

There is a condition called dermatitis herpetiformis that is considered an automatic diagnosis of celiac. It is a skin rash. This means that the immune system is attacking the skin instead of the intestinal villi.

It's not such a stretch to figure that the immune system might be triggered by gluten to attack all kinds of things: the thyroid (Hashimoto's, Grave's disease), the pancreas (diabetes), the stomach (GERD, bloating, intestinal pain), the liver (autoimmune hepatitis), the joints (rheumatoid arthritis), the neurological system (fibromyalgia, and all kinds of other neuro issues), the brain (bipolar syndrome, depression, brain fog, autism, who knows what else).

All of those conditions have a higher concurrence rate among celiacs than amongst the "normal" population. And all are supposedly "treated" with medications that mask the symptoms but do nothing to address the cause.

[marie06]

Biopsies are totally hit or miss. You have 22 feet of intestine, and they biopsy 4 to 6 (if you are lucky) quarter-inch (or less) sections. That leaves, um, 21.9 feet left that they haven't biopsied--and celiac damage is often patchy and not visible to the naked eye.

Seems to me your doctor is being unusually intelligent in noticing that yes, gluten IS causing you a major problem.

Sure, he could tell you, "well, our biopsy didn't turn up any signs of celiac so you can safely eat gluten again," but WHY? So you can do more obvious damage?

The more damage one does by continuing to eat gluten when the body is already making antibodies against it, the more irreversible the damage is, and that includes neuro damage AND cancer.

I'm assuming that the doctor ordered the biopsy in the first place because your bloodwork showed elevated antibodies to gluten. That, coupled with your dietary response, is practically irrefutable proof that you should be on a gluten-free diet.

THANK You for your post. My biopsy (altho singular - not even 4-6) came back negative but so many of my symptoms have disappeared on a gluten free diet that I was confused. My doc (not a deliac doc) said my nausea was due to 'chronic pain'. However, after just 1 week on the gluten-free diet the neausea (that I had for almost 2 years) was gone and has not returned. I went to see a food allergist on Sat and he is doing bloodwork for celiac (even tho I have been Gluten-free Casein-free since 6/5/08). HE seems to think that I DO have Celiac.

[Fiddle-Faddle]

Why is he doing celiac bloodwork if you've been gluten-free for a month? You shouldn't BE producing antibodies against gluten if you're not being exposed to it. Or is he doing genetic testing???

[marie06]

Why is he doing celiac bloodwork if you've been gluten-free for a month? You shouldn't BE producing antibodies against gluten if you're not being exposed to it. Or is he doing genetic testing???

I was there for food allergy testing. He asked me if I wanted to do the bloodwork for Celiac. He said it may come back negative because Ive been gluten-free...but he said if it came back + I knew for sure it was Celiac, vs just an assumption.

[gabby]

Sounds like you've got a great doctor!

[IMWalt]

So I'm wondering why I feel better without gluten when I don't seem to have any reason to be reacting badly to it in the first place. This is all very confusing.

Yep. Very confusing. Same thing with me. Doc said biopsy showed mild gastritis. They only grabbed one spot of my duodenum, and it looked normal. However, after being gluten-free for a few months (during which time all of my symptoms went away), I have a much bigger reaction than I used to have. Now, it seems like a couple crumbs and I have horrible cramps and gas, sometimes D.

Grrrrrrr.

[amg2389]

I am actually really surprised that my biopsies were negative because the problems I was having totally cleared up by cutting out gluten. Except if I accidentally get glutened and then I have a horrible reaction ... 10x worse then when I was eating gluten regularly (is that normal?).

Doc is saying biopsies came back with mild gastritis ... but every reference I check says nothing about a gluten free diet as treatment for that.

So I'm wondering why I feel better without gluten when I don't seem to have any reason to be reacting badly to it in the first place. This is all very confusing.

I had two tests for Celiac...a biopsy and blood test. And both came back negative. But my doctor also said to go gluten-free. Supposedly the testing for Celiac can be really flaky and inaccurate (especially in children and teens, like me)--I have several friends who have Celiac but tested negative. After going gluten-free, I have felt much better. It's still sort of a mystery to me too though!