Confused By Biopsy Results

[DebbieM]

Hi...

This is my first time to this website. Just looking for some advice.

Wondering if anyone has had similar biopsy results or has any opinions about what my dr. told me.

Just a little background: I tested negative on the celiac panel bloodtest; positive for both genes on the DNA test; was gluten free for 9 months and then did a 3 month gluten challenge before this biopsy.

My results were: "Benign Inflammation of Small Intestine-suggestive of mild, early celiac disease, but not diagnostic of this" AND "may need longer on gluten containing diet to develop the changes needed for more definite diagnosis".

ANY input would be very greatly appreciated.

I know it would make sense to just go gluten free, but I have a very, very strong desire to know 100% if I have celiac.

Thanks,

Debbie

[mushroom]

Hi...

This is my first time to this website. Just looking for some advice.

Wondering if anyone has had similar biopsy results or has any opinions about what my dr. told me.

Just a little background: I tested negative on the celiac panel bloodtest; positive for both genes on the DNA test; was gluten free for 9 months and then did a 3 month gluten challenge before this biopsy.

My results were: "Benign Inflammation of Small Intestine-suggestive of mild, early celiac disease, but not diagnostic of this" AND "may need longer on gluten containing diet to develop the changes needed for more definite diagnosis".

ANY input would be very greatly appreciated.

I know it would make sense to just go gluten free, but I have a very, very strong desire to know 100% if I have celiac.

Thanks,

Debbie

Any time you have an inflamed small intestine you have an unhappy gut. Your doctor may be right; with a little more exposure to gluten you could well test positive. However, you must bear in mind that many people give false negative biopsy results, and your inflammation may not progress to the full celiac villous damage. I would be interested in knowing your history and your family history. Are there autoimmune diseases in your family, thyroid diseases, intestinal cancers, diabetes, etc. If you carry two celiac genes it would seem that there must be something in your family that resulted from this genetic inheritance. If so, do you really want to risk triggering one of these by continuing on your challenge? Did you have terrible symptoms when you resumed gluten, or are you a "silent" celiac? All this information would be relevant to any further input. Do you have children? If so, do they have any symptoms? So many unanswered questions....

[ravenwoodglass]

My results were: "Benign Inflammation of Small Intestine-suggestive of mild, early celiac disease, but not diagnostic of this" AND "may need longer on gluten containing diet to develop the changes needed for more definite diagnosis".

Thanks,

Debbie

IMHO you have been diagnosed. Did the gluten challenge make you ill? If it didn't then you may want to keep 'poisoning' yourself for another 3 to 6 months and go back and get the endo done again. I am betting you have been feeling pretty sick though. If you have I would consider myself diagnosed rather than risking developing further problems like brain impact, gallbladder or liver problems or any of the other unpleasent offshoots of celiac.

IMHO the endo showed that your gluten-free diet had healed you and you haven't had enough damage yet on the challenge to make the doctors happy. Just my opinion but I would get back on the diet strictly and then perhaps endo in another 3 months or so and see if you have healed. That might convince your doctor enough for him to give you the 'official' diagnosis to go along with the proof your body has shown already.

[DebbieM]

THANKS for the responses. Here are some answers to your questions...

My mother had celiac. I do worry about my kids and that is another reason I want to know 100%, as opposed to just diagnosing myself. My daughter seems gassy, can be irritable and has a bit of a belly on her. The only concern I have for my son is he is small.

I did feel sick during the gluten challenge. Nothing horrible, but my usual symptoms of bloating and gas. When I was gluten free for 9 months I was also dairy free and some other foods were cut out as well and I felt great.

Thanks,

D

[ravenwoodglass]

THANKS for the responses. Here are some answers to your questions...

My mother had celiac. I do worry about my kids and that is another reason I want to know 100%, as opposed to just diagnosing myself. My daughter seems gassy, can be irritable and has a bit of a belly on her. The only concern I have for my son is he is small.

I did feel sick during the gluten challenge. Nothing horrible, but my usual symptoms of bloating and gas. When I was gluten free for 9 months I was also dairy free and some other foods were cut out as well and I felt great.

Thanks,

D

Since your mother is celiac chances are that is your issue also. I would talk to your doctor about the possibility of reendoing after another period of being gluten free and see what he says. You have nothing to lose there and if the only thing that you do is go gluten free and the findings that you just had on your endo are gone when you are rescoped your doctor may well give you your 'official' diagnosis. You could also go back on gluten for long enough to redamage yourself to the extent that they no longer say that you have a 'mild' case of celiac. Celiac is celiac no matter how symptomatic people are. Hence the medical diagnosis of 'silent celiac'.

You do not have to be diagnosed to have your children screened. If they are still on a full gluten diet call your ped and request the tests. With your Mom being celiac and both kids showing signs it is something that the NIH would advise. Being aware of course that kids have an even higher false negative rate than adults and for adults the false negative rate on blood and biopsy is about 20%.