Need Help Finding A Doctor In Colorado

[emeraldskies]

Over a year ago, I received a positive result from EnteroLab for antigliadin IgA antibodies, transglutaminase IgA antibodies, malabsorption of fats, anti-casein IgA antibodies, and I also had the HLA-DQ2 allele for celiac disease. This was after years of many problems, including 30 episodes of diarrhea a day (even with Imodium). I found my doctor completely unwilling to work with me, even though I was in a dangerous state. Now that I have tried to get help for various conditions, such as osteomalacia, I find that the doctors get completely hung up proving my past and refuse to even acknowledge the reason for my visit. For instance, I went to an adrenal specialist for hypocortisolism, and he only cared about me "proving" the existence of hypothyroidism (which had been diagnosed many years previously, and with proper treatment, I no longer had the symptoms he thought I should have). I had written this on my forms and hadn't even mentioned it as being a problem. This happens every time I try to receive help, and I am so ill that I have been an invalid for years (I'm in my late 20's now), and every time I go to see a doctor, it drains me so badly that I must rest for three months.

The last time I had to try to prove a past diagnosis was for celiac disease. The gastroenterologist didn't even believe I had it, so he made me go through with the biopsy. Apparently, he thought I had colitis instead, so he performed many biopsies in the large intestine (I had an upper GI and a colonoscopy simultaneously). This was, of course, negative. He only did one biopsy in the duodenum and in no other parts of the small intestine. I had a "negative" result for celiac disease, but I had been on the diet for a year, so his results were obviously inaccurate. Rather than put myself through months of reintroducing gluten and casein (though pizza, a caramel sundae, a Butterball turkey, and a pot pie sound wonderful, I don't think my frail body could withstand this), I would like to find a good doctor in Colorado who considers EnteroLab results sufficient and who would run many tests that I never had performed, such as mineral and vitamin deficiency tests, a bone mineral density scan, and tests of hormone levels. If no one knows of one in Colorado, are there any doctors elsewhere who will take these results seriously? Help is long overdue. Thanks for any responses.

[KaitiUSA]

I think the Enterolab is great testing and accurate. Those other problems you had were also probably from untreated celiac.

If you go to the home page of this site and scroll down there is a link to recommended doctors by other celiacs. You can search for your area as well. You may be able to find one that way. Doctors who are knowledgable in celiac may consider the Enterolab a good test too. I know some doctors who are all for it and then some who are close minded.

Have you went gluten free yet?

Also, if you want those tests done I am sure that if you go request them to be done you can get them done..no matter who the doctor is. They get paid enough and if one doesn't want to give you the tests then move on to another one.

[ChristyClarke]

Over a year ago, I received a positive result from EnteroLab for antigliadin IgA antibodies, transglutaminase IgA antibodies, malabsorption of fats, anti-casein IgA antibodies, and I also had the HLA-DQ2 allele for celiac disease.  This was after years of many problems, including 30 episodes of diarrhea a day (even with Imodium).  I found my doctor completely unwilling to work with me, even though I was in a dangerous state.  Now that I have tried to get help for various conditions, such as osteomalacia, I find that the doctors get completely hung up proving my past and refuse to even acknowledge the reason for my visit.  For instance, I went to an adrenal specialist for hypocortisolism, and he only cared about me "proving" the existence of hypothyroidism (which had been diagnosed many years previously, and with proper treatment, I no longer had the symptoms he thought I should have).  I had written this on my forms and hadn't even mentioned it as being a problem.  This happens every time I try to receive help, and I am so ill that I have been an invalid for years (I'm in my late 20's now), and every time I go to see a doctor, it drains me so badly that I must rest for three months. 

The last time I had to try to prove a past diagnosis was for celiac disease.  The gastroenterologist didn't even believe I had it, so he made me go through with the biopsy.  Apparently, he thought I had colitis instead, so he performed many biopsies in the large intestine (I had an upper GI and a colonoscopy simultaneously).  This was, of course, negative.  He only did one biopsy in the jejunum and in no other parts of the small intestine.  I had a "negative" result for celiac disease, but I had been on the diet for a year, so his results were obviously inaccurate.  Rather than put myself through months of reintroducing gluten and casein (though pizza, a caramel sundae, a Butterball turkey, and a pot pie sound wonderful, I don't think my frail body could withstand this), I would like to find a good doctor in Colorado who considers EnteroLab results sufficient and who would run many tests that I never had performed, such as mineral and vitamin deficiency tests, a bone mineral density scan, and tests of hormone levels.  If no one knows of one in Colorado, are there any doctors elsewhere who will take these results seriously?  Help is long overdue.  Thanks for any responses.

<{POST_SNAPBACK}>

[ChristyClarke]

I have to say right off the bat that I have no idea how to use this site and I am so sorry if I am creating duplicates or blanks. This is my first time here.

This is supposed to be a reply to emeraldskies.

I live just outside of Boulder and am waiting for my blood test to come back for Celiac. I am 36 and arrived here about 6 years ago when my husband got the promotion of a lifetime, although I was 6 weeks away from having our first baby and had been throwing up 40 times a day since day 1. The baby was fine, but I never really got back on my feet and didn't know anyone here. Since then, there has been another baby (healthy) which I almost didn't make it through and so many misdiagnosis that I can't even count. Considering that morning sickness usually doesn't continue for 4 years after your last baby, I also can't believe the incredibly unthoughtful things that doctors have been telling me over the years. I am also in a regularly disabled state due to many auto-immune problems, reproductive problems, a paralyzed stomach...

Unlike you, an amazing neuropsychologist who was trying to figure out if something happened to my brain when I got meningitis during my second pregnancy (another false lead) clued me into Celiac (it was so obvious once I read about it because my mother comes from the right part of Ireland and has chronic thyroid problems, and I've been sick and anemic and cholicy and underweight and maybe had an ulcer and lactose intolerant...my whole life).

But, I stayed on gluten on purpose until I could get the antibody test ordered grudgingly over the phone from the GI's practice because he is on vacation and I don't think they like people self-diagnosing. Next will be the biopsy and I also want to make sure that it is done right so that I am not misdiagnosed again and can start going gluten free as soon as possible, because I can't risk doing it on my own and starting the protocol all over again which is what they seem to be doing to you.

I have to leave tomorrow for my last vacation as a family of 4, as my marriage isn't making it through this problem and my children have special needs inherited from the other side of my family which I share, giftedness and anxiety and gross motor skill problems, which all adds up to too much for my husband, although he is really a good man.

The day after I get back I will see my GI and I don't know how I am going to control myself from screaming at him that he missed this because I have been auto-immune thyroid positive for years and this site spells it out clearly that a 5% cross-over means that testing should be recommended by the Endo person and the GI person, so now I am furious with my Endo guy and got into a new practice in Denver for the week after I get back. If my GI guy sounds understanding and gives me enough confidence that he will do everything necessary to get a positive result on any biopsy necessary, I will let you know as soon as possible and see if he can help you. His name is Montbriand and he is considered the best in Boulder, but who knows.

How did you fix your thyroid because mine is all over the place? We can't tell at what rate I absorb synthroid and where it goes because it disappears between tests, and my own thyroid is still producing when it should have shut down from the synthroid, and they finally figured out that I have anti-bodies that are killing my own thyroid, but they don't know at what rate, which is was gives me the impression that I go under the auto-immune category, even though the Endo guy has never said anything remotely that coherant and has pretty much told me that he'll check up on me every 3 months but has no idea what to do, which is why I'm giving the new person in Denver a shot and I'll let you know about her too.

But if during the week that I'm gone you can give me any ideas of what I should be asking my new Endo person, and what I should be testing for and what kinds of answers I should be getting to know that she is going to be of any help I would appreciate it so much.

Maybe you can help me with the thyroid and I can help you with the biopsies? Wouldn't that be refreshing to actually get a lead that gets you somewhere!

All the best to you and even if it doesn't seem like we have much in common with our lifestyles, I think that we have a lot in common with our thought process and perseverance. I am dedicating myself to doing more email since I don't get out to socialize much, and I only sleep about 3 hours a day, so I promise to be checking for you and give you all of the support that I can. Thank you for helping me feel not so alone.

Christy

[emeraldskies]

Christy, it seems that we are struggling with a lot of the same issues. I have sent you a reply privately via e-mail. Take care.