False Negative Biopsy?

[JamiD]

Hi, I'm new here.

I have a question re a negative biopsy result.

Background: 11 yrs of GI sx, iron defienct anemia, anxiety/depression/irritability, joint pain, low energy, restless legs, insomnia, super dry skin.

I quit most gluten 6 mos ago, occasional cheating, but GI symptoms nearly gone, improved energy, positive weight loss.

A few weeks prior to lab work, I was pretty strict but still had a elevated IgA, slightly elevated IgG and Tissue Transglutaminase.

6 weeks prior to my biopsy, I was eating completely gluten free.

Now my biopsy comes back negative and I read that I was supposed to go back on gluten, (MD never told me too)

I'm awaiting additional lab results, but feeling discouraged about the biopsy results.

Any feedback would be appreciated.

Jami

[sherylj]

Hi, I'm new here.

I have a question re a negative biopsy result.

Background: 11 yrs of GI sx, iron defienct anemia, anxiety/depression/irritability, joint pain, low energy, restless legs, insomnia, super dry skin.

I quit most gluten 6 mos ago, occasional cheating, but GI symptoms nearly gone, improved energy, positive weight loss.

A few weeks prior to lab work, I was pretty strict but still had a elevated IgA, slightly elevated IgG and Tissue Transglutaminase.

6 weeks prior to my biopsy, I was eating completely gluten free.

Now my biopsy comes back negative and I read that I was supposed to go back on gluten, (MD never told me too)

I'm awaiting additional lab results, but feeling discouraged about the biopsy results.

Any feedback would be appreciated.

Jami

.

As I see it you could go back on gluten and ask for another test. Emphasize your dr. didn't give you correct instructions if there is an insurance issue.

Or just go with your instincts and stay gluten free.

I am new and can't even tell you my IgA, IgG, so I still have to educate myself.

During my biopsy the dr. told my husband he didn't "see" any celiac. Once the biopsy was examined under the microscope the damage was visible. I ate wheat for a whole week since my husband said,,"The dr. said he didn't see celiac damage." I was not awake to question the dr. Anyway I was so relieved to get the actual diagnosis. The dr. was apologetic when he called with the actual results. Guess dr. have a learning curve as well.

[ravenwoodglass]

Hi, I'm new here.

I have a question re a negative biopsy result.

Background: 11 yrs of GI sx, iron defienct anemia, anxiety/depression/irritability, joint pain, low energy, restless legs, insomnia, super dry skin.

I quit most gluten 6 mos ago, occasional cheating, but GI symptoms nearly gone, improved energy, positive weight loss.

A few weeks prior to lab work, I was pretty strict but still had a elevated IgA, slightly elevated IgG and Tissue Transglutaminase.

6 weeks prior to my biopsy, I was eating completely gluten free.

Now my biopsy comes back negative and I read that I was supposed to go back on gluten, (MD never told me too)

I'm awaiting additional lab results, but feeling discouraged about the biopsy results.

Any feedback would be appreciated.

Jami

Hi Jami, Don't be discouraged please be encouraged. You have been good on the diet and the damage may very well have healed. If your original blood results are positive and they have gone down and you feel better on the gluten free diet your on the right track. Keep up the good work and have them check your blood levels periodically to make sure gluten isn't sneaking in somewhere.

[JamiD]

Just saw my gastroenterologist and he said based on my initial lab results that I did indeed have Celiac Disease, but by the time he saw me, the gluten free diet that I had already started was effective and that I currently don't have intestinal damage and my antibodies are dropping.

He said that I have been doing more for myself (by following the diet) then he could do for me so keep it up. He emphasized how underdiagnosed Celiac is and how few Dr's are familiar with it or how to test for it. (So hurrah for him!)

And he also said to get my son tested (who has had terrible dental problems, when my older kids have had none, psoriasis, allergies, and sporadic minor GI problems.)

I guess my main need for a confirmed diagnosis and hence why I was feeling discouraged is that I wanted to be validated plus I wanted to be able to demonstrate the high possiblity of my son suffering from it to my family and pediatrician. After years of no answers or validation, that just became important to me.

[Ursa Major]

You appear to have come across one of the rare doctors who actually knows what they are doing when it comes to celiac disease. Even most GI doctors are woefully ignorant on celiac disease. You must feel so relieved!

I agree, you need to have your son tested immediately. But you should also have your other kids tested, since celiac disease is often silent with no obvious symptoms.

[gfp]

Just saw my gastroenterologist and he said based on my initial lab results that I did indeed have Celiac Disease, but by the time he saw me, the gluten free diet that I had already started was effective and that I currently don't have intestinal damage and my antibodies are dropping.

He said that I have been doing more for myself (by following the diet) then he could do for me so keep it up. He emphasized how underdiagnosed Celiac is and how few Dr's are familiar with it or how to test for it. (So hurrah for him!)

And he also said to get my son tested (who has had terrible dental problems, when my older kids have had none, psoriasis, allergies, and sporadic minor GI problems.)

I guess my main need for a confirmed diagnosis and hence why I was feeling discouraged is that I wanted to be validated plus I wanted to be able to demonstrate the high possiblity of my son suffering from it to my family and pediatrician. After years of no answers or validation, that just became important to me.

I understand everything up to the last paragraph?

You already have a diagnosis and your doctor supports it? The fact your biopsy is negative really means nothing... except your probably doing OK at gluten-free.

You could die and they could autopsy your intestine inch by inch and still find no major villi damage and it wouldn't mean you were not celiac..simply that you were either not reacting and destroying villi or you were keeping to the diet.

The main point of a biopsy nowadays is to confirm there are no other problems, a negative biopsy means practically nothing unless they take hundreds of samples or better still the whole lot in autopsy... because its so easy to miss ... the more damage the easier they find it to find a decent sample but if your gluten-free or even have been gluten-free then the chance of a "good" sample decreases...

I think what you should do is clap yourself on the back for doing so well..... and be releived you have a doctor who's knowledge of testing is not stuckl 10-20 yrs in the past and in his own words can't do more for you than you yourself are doing...

Your incredibly fortunate really, so many of us went through a chain of specialists before anyone even suggested celiac disease...

When you and your son feel its the right time you can do a gluten challenge and get tests done...

[Nantzie]

I'm guessing that last paragraph was referring to some sort of unsupportive family experience. I know when I first found out about this, I wanted a firm diagnosis just so my family would get off my back and stop rolling their eyes and accusing me of making it up or trying to get attention or being a hypochondriac.

If that's the case, just do what you need to do. They may surprise you and come around eventually.

What your GI doctor said was really close to a firm diagnosis, and more than a lot of people get. If you want a firm diagnosis, you may want to talk to him again, explain whatever disbelief or unsupportiveness your family may be showing. He may be willing to give you a firm diagnosis and/or something in writing saying celiac in order to support you in your recovery. There are some doctors who will do a firm celiac diagnosis based on dietary response alone. So it wouldn't hurt to ask.

Nancy

[JamiD]

The last paragraph was about an unsupportive husband. And my Internist that thought I was too healthy to have Celiac Disease when I suggested it 3 years ago. And all the antidepressant Rx's and messed up vacations.

I have an appt for my son that has the most symptoms and plan to test my other kids as well. I have a daughter that's had occasional unexplained diarrheal episodes and another son who has never had any symptoms. I've also convinced my 76 yr old Mother (who has polymyalgia, arthritis, and decades of GI symptoms) to get tested.

It's been a hard decade and my marriage is ending, but yeah, I'm fortunate because now I've got a future I didn't think I'd have and possibly some answers/treatment for my youngest son's symptoms.

Thanks for all of the responses.