4 replies to this topic

[j9n]

I am concerned that my doctor is not following through with me. I am basically left alone. I did get a prescription to a dietitian but I had to ask for it. Last month before changing my diet I was so very sick. I had such horrible diarrhea for a couple of weeks and the pain was so bad I could not even walk, I felt like my intestines were raw. Then I started getting feverish and I have tiny red blood blisters on my legs. I did get an appointment with my gyn who put me on antibiotics and pain meds. I am slowly getting better with a very careful diet and vitamins.
Shouldn't the doctor be watching me for other signs of malabsortion? Right now my diet is pretty limited since I am trying to heal and I am starting to lose weight again. I don't even have a followup appointment.
Also shouldn't my son be tested too? He definitely shows signs. As a child we had a hard time keeping weight on him, he gets pimple like sores on his legs and back and around his mouth that don't respond to antibiotics (I have even taken him to a dermitologist who could not get rid of them). Right now is the first time in his life he is gaining weight. He is almost 16 and is on the high school wrestling team. He eats alot more but his diet is very high protein and not alot of junk food. He does get very tired and sleeps alot, over 12 hours on the weekends.
I am curious what other doctors did after diagnosis. I know I am not going back to this one but I don't know where else to go. Also did they do tests for other food allergies? I seem to be getting more and more sensitive to preservatives. I guess I am not quite sure what to do next.

[tarnalberry]

I have had no follow up either, but I was never very sick at all. I think that my internist, the one who DXed me, just wasn't concerned enough by my inconclusive test results (though she accepted the results of the dietary challenge) and otherwise fairly good health to check on anything else. She's just an internist, and isn't _that_ knowledgeable on celiac disease, though she tries, so I figure if I want to get further tested, I'll ask her. You might try asking your doc - or, like you said, finding one who will better treat your case.

[gf4life]

My GI doctor after concluding that all my test were normal, except my Enterolab test which she dismissed, said I had IBS and she would see me in a year! I was still sick at that point, but was starting the gluten-free diet. I was a little annoyed, since I had wanted some tests to check for nutritional deficiencies, but figured that I could handle it on my own. I'm doing fine, except for the occasional accident with gluten or dairy. But I feel much healthier... I would still like a bone scan and some other tests, but if no one will order them I can't get them done...

I would find a new doctor if possible if I were you, or ask for a follow-up appt. if it is not possible to get another doctor. I personally don't want another follow-up with my doctor and she is the second referral I've gotten. I just don't feel sick enough anymore to go pester the doctors for more tests or a new referral.

God bless,
Mariann

[eternity]

My son was dx about three weeks ago. His doctor called me and said he was positive for celiac disease and that was it - no follow up, no suggestions, recommendations, nothing. She also did not want to test my other children since she didn't feel they were exhibiting the SAME symptoms. ( I know you can be asymptomatic). I had to insist they be tested and I am still waiting for results.

I was totally left on my on. Someone recommended Betty Haagmans gluten-free book so I used that and celiac.com's list of safe and not safe list to get me started.