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


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18 replies to this topic

#1 Almendra

 
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Posted 18 June 2010 - 06:11 PM

After my biopsy surgery, my GI doctor pretty much discarded me. He told me just before the surgery that my blood test results meant that I most certainly had it, although he had been a little ambiguous about that fact before, intimating that the biopsy was required to be certain.

I went ahead with the surgery. His office did not call me back (though he said they expected results in a few days). I called them a few weeks later. They had forgotten about me. They let me know I was positive. I did not get any more information or details than that (should I have expected any details on the specific damages to my villi?). The doctor spoke to me on the phone and gave me the name of a nutritionist I may choose to use (after checking with my insurance company). I have heard nothing from his office in the 4 months since then.

Am I unreasonable in feeling that (just maybe) he used me to get paid for a surgery?
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#2 psawyer

 
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Posted 18 June 2010 - 07:30 PM

The GI specialist who diagnosed me a decade ago said, after explaining the results, that there was nothing more he could do for me. I needed to go on the gluten-free diet. He suggested a nutritionist, but she was utterly useless when it came to celiac disease. I knew more than she did.

Make your own decision. Once the diagnosis is confirmed by a biopsy, there is no medical treatment. The diet is the only treatment.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 Almendra

 
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Posted 18 June 2010 - 07:51 PM

Thank you, Peter.
It is good to know what is normal. It just seemed somehow anti-climatic ( <_< ) and I wondered if I was missing something.

Thanks again!
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#4 seashele2

 
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Posted 18 June 2010 - 08:39 PM

My diagnosing doctor 6 years ago was my primary care doc. She was an internist who specialized in gastrointestinal issues. So I luckily did have some follow-up for the first year and a half until she moved away to do her fellowship in gastroenterology. At 6 months and at one year, she ran celiac lab panels to verify I was gluten-free and not cross-contaminating myself since I was the only person in my family who was gluten-free. After she was gone, nothing. No primary care doc has followed up with bone scans to see if the osteopenia had healed itself. No doctor has checked my intestine to make sure my villi healed properly. My primary care doc cared because she was also celiac, otherwise most docs don't.

After original diagnosis, my doc's office called to tell me that I had celiac. I said "I have what?!" I didn't know the doctor had ran labs for that or any idea what it was so I asked how to spell it. I jumped on the internet and by the time I had my appointment with the registered dietitian a week later, I knew as much or more than she did, even though her daughter was also celiac. I gave her all kinds of website addresses for products she didn't know where even out there at the time.

Also in that week before my appointment with her and then my doc, I learned that my sister-in-law had celiac but didn't - and still doesn't - follow a gluten-free diet at all and that my maternal uncle had also just been diagnosed with celiac. They both live in big cities where there are GIG conventions and such so they had other sources for sample and info, but I just learned everything I could from the internet, books and suggestions and reassurance from my celiac primary care doc at the time.

Like I said, I was lucky to have a primary care doc who had celiac, otherwise I would have gotten no follow up as doctors have since proven. If you have questions about the gluten-free life you're entering into, ask away. Just about everyone living with celiac understands the darkness that follows the celiac diagnosis as far as physician support and follow-up goes. :-(
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#5 MagpieWrites

 
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Posted 19 June 2010 - 06:48 AM

Hate to say it, but this seems to be the more common reaction I hear of after diagnosing a patient with celiac.

In my case, the doctor came out after the biopsy, shrugged and said "Well, looks like celiac after all" and tried to walk away. My husband literally had to STAND IN THE DOORWAY (my wonderful husband is a former powerlifter - when he blocks a door, it stays blocked! :P ) to force the man to expand on that and give up more information.

I had to hound the office for the final results - and once those came in... I got "Eh, yeah. It's celiac." and nothing else. Not even a referral TO a nutritionist. (And it wasn't for lack of insurance - my husband WORKS for an insurance company, ours is pretty much the gold standard.)

I know there ARE good doctors - but sadly in my case (and in yours it seems) once it becomes clear there is nothing to make $$ on (no pills, no procedures, nothing a drug company will be funding) just a radical diet change, a lot just wash their hands of the whole thing.

The reason I'm still as annoyed as I sound is the same doctor actually had the gall to call me outright a hypochondriac and stupid when I forced the issue of getting the biopsy (because really, every gal just wants to spend the day with a hose up her backside! :angry: ) and when I finally found out WHY I had been sick for so long he just shrugged it off and was even ruder.

There is a reason I'm pretty hard to get into a doctor's office anymore.
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Diagnosed with celiac in the summer of 09 - after being sick since I was a teen with no answers. I miss "real" pasta - but its a fair trade off for getting my life BACK.

#6 sb2178

 
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Posted 19 June 2010 - 09:44 AM

Checking for nutrient status is pretty common, but if you're four months out, you may have normalized already if you weren't undiagnosed for too long. If you were undiagnosed for a while, I might try to get into your PCP. If you aren't having other problems, I would leave it for your annual appointment. Vit D, B-12, iron, and Mg are pretty common deficiencies. There may be others.

Definitely get your PCP to run AGA and TTG antibodies to check for compliance at some point. 6 months, 1 yr, and then annually is typical, I think. You may be getting more gluten in your diet than you expect, and knowing that is pretty important. Having your original levels is helpful in making the follow-up assessments. (for example, a drop to normal in 6 months may be reasonable for someone with somewhat elevated antibody levels but would not be expected if you have very high levels)

You should have your thyroid checked once in a while, especially if there is a family hx. Mmm, can't think of anything else.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#7 Almendra

 
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Posted 19 June 2010 - 02:53 PM

Seashele2, such a blessing to have a doctor who cares! Don't all doctors take a hippocratic oath to help people? It's sad that seems to be a forgotten goal of the profession.

MagpieWrites, I am definitely annoyed with some doctors, too! At the same time, I am so very grateful to the neurologist who put the Celiac idea in my head!

Good information, sb2178!
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#8 kareng

 
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Posted 20 June 2010 - 05:08 AM

I went to the CEliac center of the University of Chicago web site to get info . They have fact sheets. i printed the one about follow-up and high-lighred the follow-up blood test stuff. I gave it to my doc who then said OK and ran the tests. He didn't know what the results mean so I have to read and figure it out. He is following my vitamin deficiencies.
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#9 codetalker

 
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Posted 20 June 2010 - 06:25 AM

I know there ARE good doctors - but sadly in my case (and in yours it seems) once it becomes clear there is nothing to make $$ on (no pills, no procedures, nothing a drug company will be funding) just a radical diet change, a lot just wash their hands of the whole thing.

The reason I'm still as annoyed as I sound is the same doctor actually had the gall to call me outright a hypochondriac and stupid when I forced the issue of getting the biopsy (because really, every gal just wants to spend the day with a hose up her backside! :angry: ) and when I finally found out WHY I had been sick for so long he just shrugged it off and was even ruder.

There is a reason I'm pretty hard to get into a doctor's office anymore.

I can really identify with this and I am sure a lot of other celiacs can as well.

It just does not make sense that medical treatment should only consist of pills, drugs and surgery. The conviction that there is no medical treatment once a celiac goes gluten-free implies this. It posits that, since there are no pills, drugs or surgical procedures for celiac disease, then doctors can rightfully wash their hands of us when we go gluten-free. I think that is just wrong.

Years and possibly decades of damage is not undone overnight by going gluten-free. The common immediate symptoms should clear up as may the symptoms that prompted doctor visits. However, it may take quite a while for other damage to heal. During that time, celiacs need care.

Simple common sense should dictate that anyone with a diagnosed, life-long condition should be monitored throughout their life. There should be an established protocol for doing this. Once a celiac is diagnosed, their medical record should be flagged and certain monitoring should take place. This is similar to other protocols such as the one for being older than 50.

All things considered, I would think this will be one of the next advancements in celiac awareness among the medical establishment. Some day, doctors will have to realize that celiac disease is a life-long condition that needs life-long care. That way, it will not become out-of-sight, out-of-mind because the patient is on a gluten-free diet.
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#10 vbecton

 
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Posted 21 June 2010 - 04:42 AM

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. ;) Good luck!
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Diagnosed with Celiac Disease, July 2010, after 20 years of chronic low blood sugar and GI issues. I blame undiagnosed Celiac Disease for not becoming a professional marathon runner and being such a pathetic athlete in college. I was robbed :)

Gluten Free 04/2010
Dairy Free 06/2010
Soy Free 05/2010
Legume Free 05/2010
Caffeine Free 05/2007

#11 SMayberryScott

 
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Posted 22 June 2010 - 06:32 PM

I went to the CEliac center of the University of Chicago web site to get info . They have fact sheets. i printed the one about follow-up and high-lighred the follow-up blood test stuff. I gave it to my doc who then said OK and ran the tests. He didn't know what the results mean so I have to read and figure it out. He is following my vitamin deficiencies.



I just went to that website. That is a really great reference, thanks for the tip. I have never had follow-up work and currently being pregnant am constantly worrying about my diet. I was diagnosed in Jan and found out I was pregnant in Feb, so a blood test to confirm I am on the right track would put my mind at ease. Thanks again!
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#12 Rhonda_R

 
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Posted 25 June 2010 - 03:02 PM

You should have your thyroid checked once in a while, especially if there is a family hx.


Sorry if this is a silly question, I'm relatively new at all of this. Why should the thyroid be checked and what would we be looking for?

~Rhonda
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#13 T.H.

 
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Posted 01 July 2010 - 05:39 AM

I had a very similar experience in the Tucson area in Arizona with our own Celiac Guru, LOL.

My first Gi was useless. He did the tes, told me it was positive, gave me a dietician's name, and it was adios, T.H.

I went and checked with our local celiac group for a GI doctor their members recommended and that's how I found the GI I go to now. HE did everything you just mentioned - tests, scopes, blood tests, a couple ultrasounds for certain organs to check that they aren't suffering due to vitamin deficiencies, and allergy tests, follow-up schedule and monitoring, etc.... He even has a pillcam that looked at your entire intestine, and since certain areas of your intestine digest certain things, that helps tell what your most likely issues will be, nutrition-wise. Has a great dietician who used to be one of his patients, so she's REALLY aware of all the issues.

Also really great about family, too, urging me to get everyone 1 degree away (kids, parents, siblings) tested. Very passionate about the disease, really, and I feel so, SO lucky to have him, considering how many problems it turned out I had as a result of Celiac!

I figure that if there ARE doctors like this out there, that means the knowledge is out there, too. Which means doctors who give poor care - GI docs - have no excuse, IMO. I'd urge anyone to at the very least find a GI doc who automatically plans out follow-ups within a few months, if nothing else.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#14 sb2178

 
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Posted 01 July 2010 - 09:15 AM

Autoimmune thyroid disease is pretty common in celiac patients, especially those who weren't diagnosed for years on end. It's also a cheap and easy test that can greatly improve your quality of life IF there is a problem. Some doctors just do TSH, others also do T3 and T4 tests.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#15 Tina B

 
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Posted 13 July 2010 - 01:14 PM

The GI specialist who diagnosed me a decade ago said, after explaining the results, that there was nothing more he could do for me. I needed to go on the gluten-free diet. He suggested a nutritionist, but she was utterly useless when it came to celiac disease. I knew more than she did.

Make your own decision. Once the diagnosis is confirmed by a biopsy, there is no medical treatment. The diet is the only treatment.


Agreed, I was also diagnosed by bloodwork and +biopsy by a GI. No follow up by him needed but you need follow up the same as anyone without celiac. Depending on age: annual lipid panel, CBC, electrolytes. in some cases thyroid function, bone densitometry for osteoporosis (ages 50 +). This is follow up by your primary. Treatment is only the diet so nothing else needed.
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Gluten free since 1990.
Diagnosed by duodenal biopsy.

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