Positive Blood, Negative Biopsy

[Jazphoto]

So my doctor called this morning. My biopsy came back negative for Celiacs, but my blood work was positive. I believe she only took 3-4 samples of my intestine. I also have an ulcer in my stomach and an ulcer in my esophogus (sp?). She said she was a bit puzzled by these results. I am a bit confused as well. Feedback would be greatly appreciated...thanks so much!

Julie
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JAZ

[John]

It seems this is an extremely common phenomenon. From what I understand, there should be 12-15 samples because of how spotty damage can be in the early stages. But I think the doctors even realize that you shouldn't punch 15 holes in someone's intestines when you already suspect they are in distress.

IMO, the biopsy is a fairly primitive means of detecting gluten intolerance and it is only effective in later stages of damage and extreme cases. The blood antibodies tell me that damage is being done, there just isn't enough done yet for it to be visible.

I also find it extremely ironic that testing for this condition is more invasive than the treatment.

[Jazphoto]

Thank you so much...I'm feeling a bit better now after your response and doing some more research. Do you happen to know anything about ulcers and celiacs? Of course I had to go research this online and I am freaking out about what an Ulcer can mean. My doctor is adament about treating them, but she would have been able to tell if it was something bad, right? I hate having to wait for the doctor to call back...grrrrrrr!!! I have a billion questions for her and a voicemail response does not do me much good. THanks for your help!
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JAZ

[John]

I really don't know, ulcer is really a broad term describing a wide range of potential causes. I see there are a few causes of ulcers that could be related to Celiac's, including general loss of healing capacity, susceptibility to infection, and even diabetes.

[aklap]

The reason the doctors don't take enough samples is that they don't any better. The samples they take are pretty small. If they use the same type of device they use for colon biopsy - the head looks like an alligator clip.

I do agree with the fact that the medical community should revise or update their classification of CD. This is where Non Celiac Gluten Sensitivity comes into play [that many docs don't know about].

Depending on what blood tests they did, it's possible to be skewed by other auto-immune diseases. The tTG test can be positive in diabetes and Thyroid disease.

Jaz, do you know what blood tests they ran? You might consider getting a copy of our lab results.

For your uclers - did they test for H.Pylori? This is a bacteria that causes ulcers, meds usually will clear that up. Please try not to work yourself up in a frenzy over this. It only adds to your discomfort [trust me ].
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Jazphoto]

I just spoke with my doctor. She said that the translutaminase/endomysial were elevated. So she advised continuing on my gluten free diet. I was feeling pretty crummy since starting, but I woke up this morning feeling MUCH better. I think I have even dropped a few pounds (total bonus!).

She said the ulcers were small and to continue taking Prevacid. They are not due to bacteria, and she said they were not cancerous (which was my major concern). About 1 1/2 months ago, I had a herniated disc and 2 degenerative discs in my neck...I was on 800mg ibuprofen for about 3 weeks before I had to stop taking them to get my endoscopy. I am thinking that they are probably from that. I have a follow up appointment with her on April 12th and I am going to ask for a colonoscopy just so I have a baseline for the future. Better to be safe, ya know?

Thanks so much for the feedback, I really appreciate it. I really must stop self diagnosing...it's only going to drive me crazy! It just sad that I don't trust doctors....my old physician really pushed me to that point!
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JAZ

[aklap]

Oh yeah...anti-inflamms are rough on the stomach! Been there done that too! LOL

I am glad doc told you to stay on GFD. I think you'll be surprised with a bit of time.

I also think you're wise to get a colo done too. I ask to have the colo done when they did my EGD. I told the Gastro - "As long as you have me out, you might as well have your way with me" Good thing I requested it [he wouldn't have done it other wise], they found and removed a polyp.

I hear ya on the docs situation too...mine where the same way...luckily [I think], my GP retired
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Jazphoto]

I finally got my blood work back from my doctor, along with my biopsy results. She only took 3 samples...so I suppose that would be why she didn't find any damage.

For the blood work, she did a Celiac Disease Panel. Here is what it said:

Endomysial Antibody IgA Positive

t-transglutaminase (tTG) IgA was 16 ...the range was 0-3 negative 4-10 weak positive and >10 positive.

So I really didn't need the endoscopy...I'm pretty darn sure I have Celiacs Disease, considering the test is almost 99% accurate. I'm still getting used to the gluten free diet...and my co-workers just got some of the best pizza. I am also having my kitchen redone in a couple of weeks and am pondering how I am going to cook! I suppose my husband and I will be heading to my Mom's to borrow their kitchen!!!

I'm so glad this site exists, I think I would be even more lost without it!
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JAZ

[aklap]

Julie,

Traditionally, if you get positive blood work, they want to do a biopsy. I most cases to get a CD dx [it does somewhat depend on the doctor], villi damage and positive results on a GF diet.

There is continual debate on the value of doing the EGD to take biopsy if the blood work is positive. Sometimes thing change very slowly in medicine - they haven't come to the consensus that biopsies can be ditched all together.

I'm glad that the doc is keeping you on a GF diet. Did they say anything about followup blood work? This is usually done at 6 months and then at 12 months. After your 1st year...it usually goes annual followup.


A new kitchen - how exciting! We have a thread on new kitchens [what you'd like]. For your own kitchen, look at ditching your wooden spoons, wooden/plastic cutting boards. Teflon pans, basically anything porous.

Stick around - we'll help get you thru this. It will take some time and effort, but it will all be worth it!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Jazphoto]

Yup, a new kitchen! We will have our fridge in the dining room for a while, but it's totally worth it. I actually think all of our pots and pans are teflon. We just got married in September...and that is what we wanted. So after reading your post, I spoke to my husband and we will have a few of them dedicated as Gluten-Free. My husband does not generally cook anything with gluten in it, but we are being safe about it.

I called a restraunt today, b/c we were going out for my mother in laws bday. The manager said almost EVERYTHING has wheat in it. However, their tasty corn tamalies were gluten free...and I was a content girl!!!! THe best part is...I no longer feel sick after meals...and it's soooo good!!!!

Hope everyone has a great night!!!!
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JAZ

[aklap]