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

[Almendra]

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?

[psawyer]

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.

[Almendra]

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!

[seashele2]

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. :-(

[MagpieWrites]

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! ) 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! ) 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.

[sb2178]

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.

[Almendra]

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!

[kareng]

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.

[codetalker]

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! ) 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.

[vbecton]

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!

[SMayberryScott]

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!

[Rhonda-R]

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

[T.H.]

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.

[sb2178]

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.

[Tina B]

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.

[zelda]

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.

[Judy3]

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.

[haley]

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. Good luck!

[mle]

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?