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Inconclusive Test Results?

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I just talked to my GI's office about my biopsy results and it came back inconclusive. Has anyone ever had this happen? I wish it would have been just positive or negative. I don't understand what it could be. The person I spoke with (not my doctor) didn't seem to be able to answer my questions and now it's too late to call them back. I have to wait until Monday when I pick up my path reports. She mentioned something about inflammation due to acid reflux???? My head was spinning when she said inconclusive that I couldn't think straight enough to ask the right questions. I could kick myself. I just want this over with. Has this happened to anyone else?? I wasn't gluten-free before the test, in fact I thought he was checking for inflammation due to Crohn's. I was taking prednisone for a few months but had tappered off about 2 months prior to my EGD. I'm also taking immune suppressants as well. Any ideas would be great.


Lisa :unsure:


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Yes, I had the same thing happen to me. My blood test showed signs of celiac disease, but the biopsy was "inconclusive". The doctor said that there was "nonspecific inflamation" but not the typical damaged villi ( I think that's spelled right). He still believed it was there though. He said that the damage could be "spotty" so maybe he just missed biopsying the right spots. Also, apparantly it depends on the experience of the technitian reading the biopsy. My doctor recommended that I try going gluten free and see if it helps. I've only just started about two weeks ago but I can't believe how much better I feel. I went to the doctor because of "attacks" of diarrhea and abdominal cramps I've had for about 25 years (I'm alittle slow on the uptake, I know). It sounds really stupid but I didn't even realize how sick I felt every time I ate, because I've always been like that. I just thought that everybody felt sick after they ate, until I wasn't anymore. Silly, huh? Anyway, I hope you find good answers to your questions. Apparantly, we're not alone!


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Who doesn't have problems with thr doctors not knowing what they are doing!

As many of you probably experienced, you go through quite a few doctors before

they can figure anything out. One doctor I have been going to for 15 years had never even heard of celiac disease before and asked if I could fax him all the information I had at home to him!!! I did it right away so no other patient of his would have to go through the ignorance of another doctor.

I was actually diagnosed about a year and a half ago, recently took another test,

to find out if my gluten level has decreased and the office actually misplaced the test for a whole week. I consider this normal, kinda sad :( don't ya think.

Anyway, my level went down, but not as much as I had hoped. I am even more diligent about my diet and have learned greater things on this site than anywhere else.

You have to remain positive and think about you while sorting out the diet, the change in lifestyle, i.e. going out, to tell or not to tell, getting over the depression, etc. In the end, the payoff is how much greater you will feel after you make the changes and get on with your life.

It is also fun to know how much more you know than the doctors and they wasted thousands of dollars and years of their lives and didn't learn about something so common in Europe that all newborns are tested for celiac disease.

Good Luck!!!


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    • Going private no problem with getting the tests now, adds financial pain to the physical pain but better than 6 month waiting list on the national health service. Just feels like a lot of pain and aggravation to tell me what I already know deep down. Feels like my whole future has been taken away with this and I have a feeling I haven't even seen the half of it yet. Doctor seems to be very relaxed on the concept of needing to worry about cross reactivity, gluten paranoia when eating out etc. yet it seems to be the case for most on there that that's exactly how it is for so many people. Someone tell me I'm wrong... or is that really what life becomes in the cold harsh reality of things?
    • It took me years to be diagnosed.  I've been misdiagnosed with several different things and knew that there was more to it.  I requested to have an egd to test for Celiac's two years ago, my doctor never called me back so I went low gluten from then on.  I still felt like hell because I didn't realize that "everything" has gluten in it....  My daughter became ill back in March.  I went to several different doctors trying to figure out what was causing her to be ill.  Our family doctor said she had gallstones, wanted to immediately do surgery on her.  I refused since she didn't fit the typical signs of a child with gallstones.  I requested a pediatric surgeon and then a pediatric gi dr.  The surgeon was smart enough to say maybe ask the gi dr to test for celiac disease....  Then it clicked.  I was so angry and mad at myself and my dr for not listening to my body for the past several years. Her blood test was negative, but the biopsy was positive.  She went on the gluten free diet.  I then said I wanted to be formally tested.  Blood test was negative, biopsy was positive and they ran the genetic screening.  I am a DQ2 homozygous, cat 8.  My doctor apologized to me over and over.   I have two sons that were tested for their genes, one is a cat 4 and one is a cat 2.  If they start showing signs of the disease they will be tested by way of egd.  Their pediatric gi said that I probably would've died by 40 if I was left undiagnosed.   So in saying all of that, fight for your test.  Listen to your body, but don't stop living.  Use this as a teaching tool.  Help others that don't understand the disease.  It'll be tough but you can do it...
    • Hi, thanks... Yes, I was diagnosed with glucose intolerance by an endocrinologist. That's when I started cutting back on sugar. Other than some deficits (chromium, testosterone, D + B-12) they found nothing. Except that I also have mild ostopenia, and I often get kidney stones which is strange but they told me not to worry about it and to get more exercise etc. Which is exactly what I've been doing. I can tell you, banning gluten and sugar from my diet is the best thing I've ever done in terms of diet. The pounds came right off. But don't worry, I'm not a walking skeleton yet, lol. Fortunately the weight loss is a result of my diet, I had problems losing weight before the diet and even when exercising. But it all makes sense now. I easily store carbs as fat and have a hard time losing them. I still have the intolerances though... I had a high white blood cell count but they thought nothing of it. It all points to inflammation in my gut somewhere. But hey they're the doctors if they tell me not to worry about it I'll just have to try and figure it out on my own I guess. Meanwhile I'm really happy to see the belly blubber disappear.  Cheers
    • Also, I know that the DQ2 is the most common one representing celiac disease.   I have low IgA-35 and my DGP Igg - 34.8 (medium to strong positive is greater than 30) All the IgA labs were within range. I have Hashimoto's as well. My vitamin D level is 23. I guess I'm wondering how likely it is that I have celiac disease.  The genes I have are not the worst ones to have, I believe, and while my DGP Igg is high it's not crazy high.  I'm still awaiting a call back from the GI as the PA told me to go gluten free for two weeks and then reintroduce it (this was last week while the GI was out of the office).  I guess I'm wondering what the point of that really is... Thanks again everyone for your help and advice as I navigate this...
    • Do you have any diagnosis from a doctor?  Weight loss like you are describing could signal a serious issue that you shouldn't be messing around with.
      You shouldn't be cutting out all of those foods without going to a doctor to figure out what is going on.
      A doctor would be doing testing to make sure nothing serious is going on.
      I'm the first person to say I haven't found a good doctor and I'm suffering with serious pain and issues because of that so I am altering my diet, but I'm following up with the doctor.  So if you haven't schedule an appointment with a GI doctor or some doctor.
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