Waiting (Not So) Patiently For Results

[kameelham]

Hello Celiac experts! I've started on the path of diagnosis and while i wait for the results of what I hope is my last test I was hoping you all could give me your expert opinions.

A little over a month ago I was having severe pain in my esophagus so I went to my primary doctor. She wasn't sure about the cause but was concerned so I was sent to a GI and ordered a series of blood tests one of which was for Celiac. The GI suspected an esophagus ulcer caused my one of my medications and we proceded with an endoscopy just to be sure. He was right, there was a large ulcer, he also told me after the procedure that he noticed my small intestins looked "grainy" and he had taken biopsies to test for Celiac. I didn't think much of it until the next week when my doctors office called to tell me that my blood work levels had come back high, but not definitive (not sure exactly which test this was) and recommended I follow up with the GI. Well, I thankfully had already had a biopsy done, so i figured I'd just wait to hear what that said. Two weeks went by with no news so I called the GI who then told me that the biopsy was negative, but he had just seen the blood test results and wanted to do more blood work and a genealogy test. A few weeks later GI says I have the genetic markers present and slightly higher levels then before on the blood work (again, not sure which test this was). My doctor seemed to think that I had a false negative on the biopsy and that most likely I do indeed have Celiac, however before giving me an official diagnosis he wanted to do a capsule endoscopy! So, that happened a week ago and I am now waiting for a call on those results.

I've never thought about Celiac until now and I have to say the more I read about the symptoms the more sense it seems to make. I've had bloating, gas, fatigue, skin problems, anxiety, knee aches, migraines, and a history of stomach problems, including cyclical vomiting (though I haven't found anything linking the two) with no real solution.

My question to you is, does this seem consistant with the false negatives and sometimes non-clear cut diagnosis of Celiac?

Thanks for any thoughts you may have! I'm new to this and trying to gather as much information as possible.

[ravenwoodglass]

Welcome. You don't need to wait on those results to start the diet. You had a positive blood test so you need the diet no matter what the endoscopic test shows. False negatives are common with both blood and biopsy but not false positives. Read as much as you can here and ask any questions you need to.

[sa1937]

Hello Celiac experts! I've started on the path of diagnosis and while i wait for the results of what I hope is my last test I was hoping you all could give me your expert opinions.

A little over a month ago I was having severe pain in my esophagus so I went to my primary doctor. She wasn't sure about the cause but was concerned so I was sent to a GI and ordered a series of blood tests one of which was for Celiac. The GI suspected an esophagus ulcer caused my one of my medications and we proceded with an endoscopy just to be sure. He was right, there was a large ulcer, he also told me after the procedure that he noticed my small intestins looked "grainy" and he had taken biopsies to test for Celiac. I didn't think much of it until the next week when my doctors office called to tell me that my blood work levels had come back high, but not definitive (not sure exactly which test this was) and recommended I follow up with the GI. Well, I thankfully had already had a biopsy done, so i figured I'd just wait to hear what that said. Two weeks went by with no news so I called the GI who then told me that the biopsy was negative, but he had just seen the blood test results and wanted to do more blood work and a genealogy test. A few weeks later GI says I have the genetic markers present and slightly higher levels then before on the blood work (again, not sure which test this was). My doctor seemed to think that I had a false negative on the biopsy and that most likely I do indeed have Celiac, however before giving me an official diagnosis he wanted to do a capsule endoscopy! So, that happened a week ago and I am now waiting for a call on those results.

I've never thought about Celiac until now and I have to say the more I read about the symptoms the more sense it seems to make. I've had bloating, gas, fatigue, skin problems, anxiety, knee aches, migraines, and a history of stomach problems, including cyclical vomiting (though I haven't found anything linking the two) with no real solution.

My question to you is, does this seem consistant with the false negatives and sometimes non-clear cut diagnosis of Celiac?

Thanks for any thoughts you may have! I'm new to this and trying to gather as much information as possible.

It's entirely possible that you have celiac. False negatives on either the blood test or biopsy are not uncommon. If your celiac panel came back high, I would say that's a positive...not sure why your doctor would say that's not definitive. As far as the biopsy is concerned, if damage is patchy and samples are taken in areas not damaged, it could early be interpreted as negative (and might be a false negative).

Make sure you pick up copies of all of these tests! The celiac panel always has a reference range, which varies from lab to lab. When you get a copy of that, post your results here and someone can help you interpret them.

Also, get a copy of your biopsy results...a pathologist has to examine those biopsies as damage is not usually visible to the naked eye.

It sounds like your doctor is being very thorough to find out what is causing your problems. When all celiac testing is done, you should give a gluten-free diet a strict try as you may find you do indeed have problems even if tests are inconclusive.

[kameelham]

So the doctor called back today with my capsule study results. He found some erosion farther down on in my intestines then the initial endoscopy went that is consistent with Celiac and gave me the options of going ahead and starting the diet or coming back in for a longer scope and more biopsies. I told him about my research the symptoms that I have had that seem to be related and he agreed that going gluten free and coming back for a follow up in the fall seemed to make the most sense as there was always the chance that more biopsies could still bring more false negatives.

I'm really thankful I was refereed to a doctor who seems to be so knowledgeable about Celiac. I'm feeling a little overwhelmed at starting the diet as it's now going to be a reality. I'll definitely be reading/posting here with questions!

[kareng]

So the doctor called back today with my capsule study results. He found some erosion farther down on in my intestines then the initial endoscopy went that is consistent with Celiac and gave me the options of going ahead and starting the diet or coming back in for a longer scope and more biopsies. I told him about my research the symptoms that I have had that seem to be related and he agreed that going gluten free and coming back for a follow up in the fall seemed to make the most sense as there was always the chance that more biopsies could still bring more false negatives.

I'm really thankful I was refereed to a doctor who seems to be so knowledgeable about Celiac. I'm feeling a little overwhelmed at starting the diet as it's now going to be a reality. I'll definitely be reading/posting here with questions!

Nice to hear a good doctor story!