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Do Doctors Normally Do "maintenance" After A celiac disease Diagnosis?


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18 replies to this topic

#16 zelda

 
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Posted 04 December 2010 - 12:46 PM

Very interested to read this thread even though I realize it is several months old now. My teenage son was diagnosed with celiac disease a year and a half ago after positive bloodwork and biopsy, and has been followed up with tTG levels every six months since. Initially we saw a gastroenterologist but I never went back after she told him he could still go to regular communion at our Catholic church because he "shouldn't have to give up everything" and also said that it wasn't necessary for his siblings to be tested for the disease. When we saw his regular pediatrician earlier this year for a physical he told my son that "no one stays on the gluten free diet; it's too hard to give up bread". I feel like so many doctors aren't very well educated about celiac disease. He continues to see the endocrinologist who initially diagnosed celiac because he has delayed growth due to the celiac disease, and he seems to know a little more, but never orders any bloodwork for vitamin levels, etc. My son's tTG levels have been 13-14 and the lab reports state that <20 is normal, so I assume that his numbers are OK and don't need to be lower. I have found this to be very frustrating and am interested to see that others have these same issues.
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#17 Judy3

 
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Posted 04 December 2010 - 10:31 PM

I must be one of the lucky ones with my gastroenterologist. He diagnosed me in November (this year) with Celiac and I have to see him in February for a check up after being on the gluten free diet for 3 months, then he will be doing an endoscope/colonoscopy at one year for followup. I see my regular doctor in May also and the two of them actually talk to one another about my case. Oh and the gastro doc even showed up for my appt with the dietician because he knew I was going to be there and had a break between patients so he came and sat in on our meeting. (at no extra charge)

After reading this post although old, I feel very fortunate to have the doctors that I have.

:unsure:
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#18 haley

 
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Posted 22 July 2013 - 11:04 AM

Who was the Doctor you saw in Houston? I am looking for one who is knowledgable about Celiac but am having trouble coming up with anyone. Thanks!

Not sure if this helps or not, but I finally had my appointment with "THE" guru celiac doctor here in Houston last week. He spent 2 hours with my mom and I discussing the testing he would do, what tests need to be done, what sort of follow up plan needed to happen, the seriousness of Celiac, etc...

Basically for post-diagnosis, he told me I need to check in every 3 months to monitor vitamin deficiencies as he doesn't want me toxic from taking the higher amounts. Since it's an autoimmune disease, he wants to check my overall health status (how I'm feeling, any new symptoms, celiac blood work to check for CC, etc...) about every 6 months. He ordered a bone density scan, endoscopy, colonoscopy, CT of gut, blood testing through Prometheus. He also mentioned that the endoscopy needs to be done a few times throughout the recovery process to monitor the healing and to check for CC.

So, it seems to me that follow up is pretty essential even if the gluten-free diet has eliminated most of our symptoms. He was also pretty intrigued that my mother had a ton of secondary Celiac problems (never diagnosed), but zero gastro issues (thyroid disease, liver disease, osteopenia, etc...). So, he demanded she get tested too. It was such a thorough appointment, which most of us never experience, so I wanted to share what the best doctor in Houston would suggest. wink.gif Good luck!


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#19 mle

 
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Posted 27 December 2013 - 10:46 AM

Who was the Doctor you saw in Houston? I am looking for one who is knowledgable about Celiac but am having trouble coming up with anyone. Thanks!

I am also having trouble coming up with a doctor in Houston who knows much about Celiac.  I have gone to a couple of them that seemed promising but fell flat.  Did you find anyone, haley?


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