How do you find a (good) doctor to get a celiac diagnosis?

I've had several mystery health problems, but my major complaint has been chronic fatigue for the last year. I've gone to my general practitioner... she's ordered blood work, heart tests, sleep tests, had me on antidepressants and antacids and sleep meds and stimulants... and no diagnosis. I've been seeing a neurologist/sleep specialist and even a GI specialist... and still no answers.

A friend has Celiac's and encouraged me to do my own research, and it seems to explain every issue I'm having. I cut out gluten and within two or three days I was already feeling a million times better. After several days of being gluten-free and feeling great, I asked my GP and she ordered the celiac blood panel. When it came back negative, she pretty much refused to consider gluten intolerance, despite the research I've found that the blood test isn't accurate if you're already gluten-free, has a high number of false-negatives, and only detects Celiac's (not gluten-intolerance). My neurologist didn't think it was gluten since I haven't lost a bunch of weight (I've gained a lot over the last year since the fatigue made it near impossible to exercise) or experience severe GI problems. And the GI just wants to do an endoscopy since I came in asking about gluten sensitivity... without doing any sort of comprehensive background or even seeing all of my previous blood work results.

After my blood test came back negative, I started eating gluten again, and felt worse than ever. I had more GI distress in those few days than I've ever had before, and my fatigue came back full force. Less than a week later, I returned to the gluten free diet. It's been 3 weeks, and I'm feeling better than I have in months.

I'm sure part of my problem is that I'm in a pretty small town, but how do you go about getting a diagnosis? I don't want to self-diagnose. My friend with Celiac's lives hundreds of miles away, or I'd go to her doctor. None of my doctors seem to have any experience or knowledge about this problem, so I'm not sure they could recognize a gluten issue if it walked up and introduced itself.

[JenB12]

Hi there my blood panel came back negative and so did my brothers. He had the biopsy of his small intestines and that is how he got his Celiac diagnosis. I sent in some samples to a lab in Texas and they were able to tell me that I have gluten intolerance (one from each parent). It was with that info that I decided to go GF. I've suffered from fatigue for over 2 years and going GF does not seem to make a HUGE difference in that respect. However it has made my digestion way way better. I no longer have constipation.

I also have hashimotos and some other positive antibodies so my fatigue could be from anything. I would say my over all health is way way better being GF.

The test incase you are curious is at www.enterolab.com I ordered the complete gluten panel including the genetic test. It's a little expensive but you can always try and have your insurance cover it. I find it i has been well worth knowing.

[tori82]

Thanks, I've considered the enterolab testing as well as the endoscopy. I was really hoping to find a doctor who would be able to advise me.

Jen, did you or your brother see a general practitioner or a certain specialist at all? Did you have to seek out a more knowledgeable doctor?

[JenB12]

Tori,

My brother first saw his general practitioner and then he saw a Gastroenterologist. The GI Dr. diagnosed him with irritable bowl. He was not satisfied with this DX and actually requested multiple times for the biopsy and then finally the Dr. agreed and low and behold he had flattened villi. After going GF for several months he had a second one as a follow up and his intestines had repaired themselves. So it was a positive celiac disease DX. Mind you this was 10 years ago and Drs are becoming more aware of the prevalence of celiac.

I saw an internist, an endocrinologist, a rhumatologist and a GP. So needless to say i saw a lot of Dr.s. It was my internist that ordered the blood test for the gluten antibodies but she ignored it when it was negative. I had to follow up my self and did so with the sample and genetic testing. It was explained to me that often times the antibody level is not high enough to be in the blood but it will be in samples in the stool if any reaction is present.  I never saw a GI specialist because I didn't seem to manifest my gluten intolerance symptoms though my gastro system, I had some constipation but I attributed it to my hypothyroidism. Where as my brothers celiac was so bad he has chronic diarrhea and sometimes vomiting.

IN my earlier post I noticed an error. I meant to write that I have 2 copies of the gene for Gluten intolerance, once from each parent and have 100% chance of passing at least one copy of the gene to my kids.

Anyways, if you find a good internist or a good GP they should be able to advise you. If you have really bad GI symptoms maybe a visit to see a gastroenterologist is in order.

[JenB12]

Sorry, i see that you've seen a GI specialist. I didn't want to self diagnose either hense the enterolab test..... all information from the samples are reviewed by a doctor and they send you the results with a recommendation for treatment.  It sounds like you've been put through the wringer like I was. I had been to just about ever specialist and I got zero answers... Your GI specialist did not advise the endoscopy/biopsy based on your symptoms? hmm.

[tori82]

I didn't actually get to see the GI, it was his nurse practitioner. She said the endoscopy is what the doctor usually recommends if someone thinks gluten is a problem. But she took my word that I think gluten is the problem.

It's kind of reassuring to hear that you and your brother both got the medical run-around. No less frustrating, but a little reassuring. Thank you.