Suspect Celiac, But Tests Suggest Otherwise

[erinb24]

I've had symptoms going on for a while now, and I have been suspecting celiac. I've been seeing a GI whom I trust and I think is very competent. I know that he has had experience with seeing celiac disease, as he typically diagnoses 2-3 celiac patients a year. He suspected celiac due to my severe anemia, and after a negative blood test, did a colonoscopy and an endoscopy. I got some unofficial results today and the small bowel test came out clean. I'm very discouraged, because my symptoms lined up so well with celiac and I'm ready to find answers. I've had mild symptoms for the past few years, but it's gotten bad in the past year and a half and in the past few months has gotten almost unbearable. Here's a list of my symptoms:

really bad/extreme bloating (my stomach has gotten much larger since I started experiencing this)

anemia (hemoglobin was a 6.9 a month ago and my doctor ordered a blood transfusion)

IGA deficiency

had my gallbladder out in 11/07

headaches/dizziness

numbness in my fingers

periods of sudden weight loss and gain (been in a time of gain for a year and a half now, yuck)

acid reflux (Dr. put me on Nexium)

gas

fatigue

mild depression/possible brain fog

back pain

I have an appointment on December 22, and I'm anxious to find out what to do next. I'm wondering if he'll want me to try a gluten-free diet to see how I react. I've never gone gluten free, so I don't know what to expect. Could this still be celiac or is it something else? I'm just so ready to find answers so that I can feel normal again.

[ShayFL]

The "small bowel" had nothing to do with Dx Celiac. It is the "upper" endoscopy that is important. Make sure you get COPIES of ALL of your labs/results. Post in here, so we can help you. Dx 2 - 3 patients a year does not make him an expert even though he might be a wonderful doctor. Doctors are human too and make mistakes. It is your health and you need to make sure. We can help!!

Did they do a complete Celiac blood panel on you? Results?

[nora-n]

The samlwel consists of three parts, the duodenum, where they look for celiac, and two more parts. some patients clearly have celiac somewhere else than the first part of the duodenum. I have also heard that some doctors only take one sample, and will most likely miss celiac that way.

I have heard of someone who paid for a video capsu endoscopy and it clearly showed celiac.

I have also read that some clinics do at least 12-15 samples for celiac since it is som patchy.

I have also read that some pathologists will not diagnose celiac when the villi are flattened.

Also, if you go to Dr. Scot Lewey's webpage on his blog he writes that early celiac one can only see increased IEL or what they are called, and that more than 2-3 on each villi tip is abnormal, but that doctors do not report that, nor thing it is abnormal with 5 or more....

One has to read the pathology report and everything.

Also, someone psoted recently that Dr. Greene added gliadin to a biopsy sample to seeif it reacted to gliadin (to differentiate from other possible things) and ot was clearly gliadin that caused an immune raction. It is easy to see immune reactions on tissue samples, they light up with a special technique, they get flourescent. That is how they diagnose DH, by the way.

If you keep getting negative results, you might have lyme disease, and it si very common for such patients to get very very similar symptoms to celiac. The glutens sensitivity from Lyme goes away after Lyme has been treated adequately they say, several here have reported that.

nora

[erinb24]

The samlwel consists of three parts, the duodenum, where they look for celiac, and two more parts. some patients clearly have celiac somewhere else than the first part of the duodenum. I have also heard that some doctors only take one sample, and will most likely miss celiac that way.

I have heard of someone who paid for a video capsu endoscopy and it clearly showed celiac.

I have also read that some clinics do at least 12-15 samples for celiac since it is som patchy.

I have also read that some pathologists will not diagnose celiac when the villi are flattened.

Also, if you go to Dr. Scot Lewey's webpage on his blog he writes that early celiac one can only see increased IEL or what they are called, and that more than 2-3 on each villi tip is abnormal, but that doctors do not report that, nor thing it is abnormal with 5 or more....

One has to read the pathology report and everything.

Also, someone psoted recently that Dr. Greene added gliadin to a biopsy sample to seeif it reacted to gliadin (to differentiate from other possible things) and ot was clearly gliadin that caused an immune raction. It is easy to see immune reactions on tissue samples, they light up with a special technique, they get flourescent. That is how they diagnose DH, by the way.

If you keep getting negative results, you might have lyme disease, and it si very common for such patients to get very very similar symptoms to celiac. The glutens sensitivity from Lyme goes away after Lyme has been treated adequately they say, several here have reported that.

nora

Thank you for all your helpful advice. I will continue to post as I get through this. I had a blood test but it came out negative, but I know that the low IGA skewed those results. I don't know how many samples the doctor got, but I will ask when I have my next appointment. I just can't shake the feeling that it is celiac. I also don't know what else it could be, especially with the anemia and my hemoglobin being so low. I know that diagnosing 2-3 cases per year doesn't make an expert, but I feel that my doctor will help me find answers. I hope that when I talk to him next week I'll get a further into investigating these problems. I just talked to the nurse and she didn't have all the results, so who knows what will happen!