I finally went to a rheumatologist here who clearly said I had celiac disease even though all my tests were negative.. but genetic test was positive with DQ2/DQ2.He agreed it was foolish of the GI Dr to do them when I had been off Gluten for awhile. Anyway..he just said it will take some time to get back to normal and really just dismissed all my remaining symtoms. I am thinking of going to Colorado to see this Dr. Lewy. He is a GI doctor. His wife has Celiac and he is Gluten Intolerant. His website is great and has alot of info. He has to know more than the doctors here in Idaho...Anyway I would love to hear if anyone else has gone to see him and how it went. Thanks Jodie

I'm double DQ2 as well, and haven't seen too many of us here. Someone on this forum said Dr. Lewey is one of the foremost celiac docs. So maybe you'll get some further responses here.

[quote name='Jodie2DQ2' date='Jun 20 2007, 08:49 PM' post='317647']
I would love to hear if anyone else has gone to see him and how it went. Thanks Jodie

Julie, I have been a patient of Dr. Lewey since 1994 when I was diagnosed with autoimmune hepatitis (now in remission since 1998). This was while he was in the Army stationed at Fitzsimons in Denver. When Fitz closed in 1996, he was transferred to Fort Carson in Colorado Springs. He called me and said he would arrange to have me continue as his patient there if I wanted to do that - a slight bending of the rules. Last year, my regular doctor observed that my blood counts were low, both red and white. I was referred to a blood specialist who diagnosed me as being anemic, iron-deficient, folate deficient, and B-12 deficient. I had many tests, including a bone marrow biopsy, with good results (no cancer). The next thing was to check for internal bleeding - back to Dr. Lewey for colonoscopy (my first); nothing there. Then an endoscopy and that's when we began to get some answers. No bleeding, but I had esophageal varices. These are usually associated with alcoholism and cirrohsis (sp?) of the liver. Also had portal hypertension. Had 4 more endoscopies to band 12 varices altogether. Dr. Lewey then ordered the gene test for celiac and biopsied my small intestine. Sure enough, I had the gene and a slight bending of the vilii. We THINK that although I had no symptoms of celiac disease, there was a malabsorption problem which caused all the other problems, including autoimmune hepatitis. I am so lucky to have had Dr. Lewey at the right time. I have not been faithful to a gluten-free diet, but I try. Last night, we ate out and I ordered a Gunther Toody's special burger - without a bun. Hope this recommendation of Dr. Lewey will make you feel good about seeing him. Elly Bergquist

Dear JODIE: I apologize for calling you "Julie" in my first reply. Dr. Lewey's wife, Jennifer, was also my primary care provider while she was in the Army at Fort Carson. Since I was seeing them both, to keep them straight when we talked about them at home, my husband and I referred to them as "Dr. Lewey" and "Mrs. Dr. Lewey". Elly

Jodie,

Dr. Lewey is awesome. Polite and thorough, and understanding. He speaks at our support groups (check it out if you haven't), and lives with celiac disease himself--so he knows this stuff first hand.

My first encounter with him was after four of my children had been positively diagnosed! My regular doc refused to test me for celiac disease (I now have a new doc), even though there was a high chance of me having it (kids results, plus my own symptoms since I was a kid).

Dr. Lewey took down all of my symptoms--epilepsy, anemia, dental--to heritage (European decent). Because my married name is not of European decent, his very first question threw me--"Are you a natural blond?" He calmly explained the reason for his questioning and I went home with a good laugh at my ignorance!

Any way, the blood work came back inconclusive (I'd been light on the gluten prior because our house immediately went gluten-free when the girls' results were +, skewing my results). He followed up with scopic, again inconclusive (no sign of trouble, however being gluten-free could have allowed for some healing to occur). He then prescribed medicines for the irritation in my stomach (relief!!), and requested genetic testing which gave my final diagnosis as +, too. We also did a gluten challenge with further blood testing to see if there was a change.

It took some time, but I am satisfied with all his work and support. He answered all of my questions without making me feel like everything was in my head (as is documented in my medical records since I was a kid!--I'm 40 now).

Once the diagnosis was official, I recieved notice from his office informing me of an annual appointment (preset, but they are willing to work in rescheduling).

My girls all had a bone density test done last year, I will most likely require that, too.

So...my impression of Dr. Lewey--very thorough, very supportive, very knowledgeable, and very honest. His staff is the same way!

and...Since going gluten-free 95% of my symptoms have disappeared! Wahoo! I am thankful that Dr. Lewey was able to help me figure out what has been making me ill for years...without prejudging me or making me feel like a hypochondriac!

Well, thank you guys for replying. I am just a bit nervous as I have had terrible encounters with the doctors here. I hope he does not wantme to do a challenge diet. There is just no way. I can't . I would probably have to commit myself. I just need to know what I could be doing wrong and what my remaining symptoms mean. I am investing alot of $ to go see him, just to be sure I am on the right track, and I am going alone...yikes. Never even been to Colorado before. Thanks again. Jodie

Gastroenterology Associates in Colorado Springs has 6 or 7 doctors on their staff. I'm retired and travel the U.S. in a motor home.....became very ill while in Arizona for the winter. Since I spend the summer near Colorado Springs, I made an appointment with G.A. and on the first office visit it was suggested that I may be gluten-intolerant. I'm still waiting for the Lab results. I went on a gluten free (and dairy free) diet and am feeling better each day....am completely pain free. I'm lactose intolerant and had been drinking Lactaid milk for over 30 years, and noticed that lactose free milk and lactose free ice cream also bothers me,so I've also given them up.

Dr. Lewey is actually the only dctor I've ever had do a GI. In all honesty, I don't really remember him at all as a result of the drugs I was on!! But... I'm still alive, so I think that he did a pretty good job His results were totally confusing to me though: "Although we can neither conclude, nor exclude the presence of celiac disease, trial of a gluten free diet is worthwhile." I tested positive for one of the genes, which is why they ordered the upper GI. That showed some deterioration of the small intestine as well as mucosal abnormality which is why he suggested the gluten-free diet. I've been on it since April and have seen great results since then! Best of luck!

My blood tests came back negative for H.Pylori and Celiac........but.......I did not know I wasn't supposed to stop gluten before having the tests done, until 1 day before the test. So, that may have altered the results. I've been well since staying gluten free. There's no way that I ever want to introduce gluten into my diet again to have additional tests done...the pain was like labor pains for several hours with additional pain/tenderness for a week.