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Can Biopsy Be Wrong?

Wendyp

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Wendyp Rookie
Wendyp
Posted

I posted a couple months ago about whether or not I should have a biopsy. All my bloodwork was fine except the TTG, which was very slightly elevated (almost one digit over the normal range).

Well, I had the biopsy and the GI said I have celiac. He was surprised, since I didn't really have the GI symptoms and my blood work "looked good". I really wasn't surprised because in the time between the bloodwork and the biopsy (about 3 months---I was supposed to have major surgery during that window, which is the reason for the wait) I started having periods of time where no matter what I ate it made my upper abdomen uncomfortable (maybe reflux?). And also, even though my thryoid was finally diagnosed as low, and I wasn't sleepy anymore due to thryoid meds, I still had days were my body was weak and tired.

However, in the back of my mind I still wonder if the celiac diagnosis was right. The above mentioned symptoms could certainly be something else. The GI doc said the pathologist was "pretty certain". I haven't had a chance to ask him what the "pretty" part means.

I've heard of false negative biopsies, but can there be false positives? My father suggests that before I go all out and change my diet so drastically, I should seek another opinion (he doesn't have much faith in doctors anyway). What do you folks think?

Also, since going gluten free a week ago, I'm sleepy and tired again. Around Christmas I was ready to call my primary care doc and tell her great I was doing on the Synthroid, how it had give me my life back. And now I'm pooped again (thyroid was checked Dec 27th and it looks great). Would going gluten free cause this tiredness?

Wendy

Fort Worth

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Guest nini
Guest nini
Posted

So let me get this straight... your blood work was only slightly elevated, but your biopsy was positive and the Dr. dx'ed you with Celiac and you are DOUBTING this? Just wanted to make sure I was understanding before I say something that might offend...

Yes there can be false NEGATIVES with the biopsy, but NEVER a false positive. The medical community is extremely reluctant to dx someone with Celiac if they don't have a clear cut indication that they have it. So YES you do have Celiac, start your diet immediately, make sure you are 100% gluten free and don't look back. You do not need a second opinion. If the biopsy was positive, you have it, no way around it.

re: the tiredness, your body is going through an adjustment period. the tiredness is common, you will want to make sure all of your personal care products including makeup and shampoo and conditioner etc... are all gluten free. Some people notice a period of gluten withdrawal, keep plugging away...

tarnalberry Community Regular
tarnalberry
Posted

You're chance of it being a false positive are incredibly low. They look for blunted villi, and though there are papers published that show a handful of cases (in the world) where dairy has caused villi blunting with a similar pattern, it's is virtually ALWAYS cased by gluten. The fact that your immunochemistry ALSO shows that your body is reacting to gluten pretty much seals the deal.

Please be patient on the gluten-free diet. You need to give your body time to heal, and give yourself time to adjust to the diet. Were you eating enough? Had you eliminated *every* source of gluten? Had you eliminated risks of cross-contamination? Are you sure you weren't just fighting a virus? Were there other stressors in your life that could have been making you tired? Etc, etc.

Wendyp Rookie
Wendyp
Posted
  • Author
I posted a couple months ago about whether or not I should have a biopsy. All my bloodwork was fine except the TTG, which was very slightly elevated (almost one digit over the normal range).

Well, I had the biopsy and the GI said I have celiac. He was surprised, since I didn't really have the GI symptoms and my blood work "looked good". I really wasn't surprised because in the time between the bloodwork and the biopsy (about 3 months---I was supposed to have major surgery during that window, which is the reason for the wait) I started having periods of time where no matter what I ate it made my upper abdomen uncomfortable (maybe reflux?). And also, even though my thryoid was finally diagnosed as low, and I wasn't sleepy anymore due to thryoid meds, I still had days were my body was weak and tired.

However, in the back of my mind I still wonder if the celiac diagnosis was right. The above mentioned symptoms could certainly be something else. The GI doc said the pathologist was "pretty certain". I haven't had a chance to ask him what the "pretty" part means.

I've heard of false negative biopsies, but can there be false positives? My father suggests that before I go all out and change my diet so drastically, I should seek another opinion (he doesn't have much faith in doctors anyway). What do you folks think?

Also, since going gluten free a week ago, I'm sleepy and tired again. Around Christmas I was ready to call my primary care doc and tell her great I was doing on the Synthroid, how it had give me my life back. And now I'm pooped again (thyroid was checked Dec 27th and it looks great). Would going gluten free cause this tiredness?

Wendy

Fort Worth

Guest schmenge
Guest schmenge
Posted

One of the questions I specifically asked my doctor was about the biopsy results and he told me the biopsy was 100%; no question. Now I guess in theory the results could get accidental swapped with somebody else who had a biopsy, but beyond that it sounds solid.

Wendyp Rookie
Wendyp
Posted
  • Author
You're chance of it being a false positive are incredibly low. They look for blunted villi, and though there are papers published that show a handful of cases (in the world) where dairy has caused villi blunting with a similar pattern, it's is virtually ALWAYS cased by gluten. The fact that your immunochemistry ALSO shows that your body is reacting to gluten pretty much seals the deal.

Please be patient on the gluten-free diet. You need to give your body time to heal, and give yourself time to adjust to the diet. Were you eating enough? Had you eliminated *every* source of gluten? Had you eliminated risks of cross-contamination? Are you sure you weren't just fighting a virus? Were there other stressors in your life that could have been making you tired? Etc, etc.

Sorry, I hit the wrong button above.

I just talked to my GI and he read the pathologist report to me, which said a bunch of stuff I didn't understand but the stuff I understood said that there was blunting of the villa, and the damage was patchy. The doc said that in years past, my biopsy wouldn't have resulted in a celiac diagnosis, but now they're finding out much more about the disease, etc. etc., which, I'm sure you all know. He did say that it is difficult to definatively diagnose until a gluten-free period has been observed. If the person's symptoms have disappeared, then that seals the diagnosis. If not then a second biopsy is warranted.

He really couldn't explain the tiredness...maybe the weather. Maybe I do have a touch of virus. Lots of nasal/sinus stuff right now due to things in the air and maybe all the smoke from wildfires here in Texas.

Thanks for your advice.

Wendy

nettiebeads Apprentice
nettiebeads
Posted

The tiredness could be due to a lot of factors. What is the protein level in your diet. A diet higher in protein than a regular diet is recommended to those with celiac. Have you been able to get a nutritionist to help you with your diet? Have you been through everything to eliminate gluten? Not just wheat, but barley, rye, malt, spelt, triticale, oats... When the gluten is completely out of your system, you will notice a difference, promise. Have you eliminated dairy? At the beginning most celiacs have to eliminate dairy until the villi heal. Then it can be tried again in two to three months, depending on healing rates.

Annette

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jerseyangel Proficient
jerseyangel
Posted

Wendy--First, I have to say that I agree with the others who said that you have Celiac and that a positive biopsy is proof of that. During the first 3 months that I was gluten-free, I was tired, hungry and thirsty all the time. I felt I couldn't get enough sleep. I took that as evidence that I was healing and just went with it. Your positive biopsy means that you have damage--even if you didn't have severe symptoms before. My advice, like everyone, is to make sure that you are 100% gluten-free. Go easy on yourself. It takes time. I began to feel better during the 4th. month. I believe that was a combination of time and working out the diet and getting to a point where I was really gluten-free. If you need tips on how to eliminate gluten from your life, there are tons of ideas here you can look up. We can help with any questions you have on that :)

loraleena Contributor
loraleena
Posted
I posted a couple months ago about whether or not I should have a biopsy. All my bloodwork was fine except the TTG, which was very slightly elevated (almost one digit over the normal range).

Well, I had the biopsy and the GI said I have celiac. He was surprised, since I didn't really have the GI symptoms and my blood work "looked good". I really wasn't surprised because in the time between the bloodwork and the biopsy (about 3 months---I was supposed to have major surgery during that window, which is the reason for the wait) I started having periods of time where no matter what I ate it made my upper abdomen uncomfortable (maybe reflux?). And also, even though my thryoid was finally diagnosed as low, and I wasn't sleepy anymore due to thryoid meds, I still had days were my body was weak and tired.

However, in the back of my mind I still wonder if the celiac diagnosis was right. The above mentioned symptoms could certainly be something else. The GI doc said the pathologist was "pretty certain". I haven't had a chance to ask him what the "pretty" part means.

I've heard of false negative biopsies, but can there be false positives? My father suggests that before I go all out and change my diet so drastically, I should seek another opinion (he doesn't have much faith in doctors anyway). What do you folks think?

Also, since going gluten free a week ago, I'm sleepy and tired again. Around Christmas I was ready to call my primary care doc and tell her great I was doing on the Synthroid, how it had give me my life back. And now I'm pooped again (thyroid was checked Dec 27th and it looks great). Would going gluten free cause this tiredness?

Wendy

Fort Worth

Synthroid is often not helpful. You should try Cytomel or Armour Thyroid. Check out Dr. John Lowe's web site. Just type in John Lowe.

I posted a couple months ago about whether or not I should have a biopsy. All my bloodwork was fine except the TTG, which was very slightly elevated (almost one digit over the normal range).

Well, I had the biopsy and the GI said I have celiac. He was surprised, since I didn't really have the GI symptoms and my blood work "looked good". I really wasn't surprised because in the time between the bloodwork and the biopsy (about 3 months---I was supposed to have major surgery during that window, which is the reason for the wait) I started having periods of time where no matter what I ate it made my upper abdomen uncomfortable (maybe reflux?). And also, even though my thryoid was finally diagnosed as low, and I wasn't sleepy anymore due to thryoid meds, I still had days were my body was weak and tired.

However, in the back of my mind I still wonder if the celiac diagnosis was right. The above mentioned symptoms could certainly be something else. The GI doc said the pathologist was "pretty certain". I haven't had a chance to ask him what the "pretty" part means.

I've heard of false negative biopsies, but can there be false positives? My father suggests that before I go all out and change my diet so drastically, I should seek another opinion (he doesn't have much faith in doctors anyway). What do you folks think?

Also, since going gluten free a week ago, I'm sleepy and tired again. Around Christmas I was ready to call my primary care doc and tell her great I was doing on the Synthroid, how it had give me my life back. And now I'm pooped again (thyroid was checked Dec 27th and it looks great). Would going gluten free cause this tiredness?

Wendy

Fort Worth

You could be tired because of withdrawal. You have only been off a week. I had lots of aches and pains at first.

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