Any Thoughts On Integrative Medicine And The Treatment Of celiac disease

[lloydke]

Not to happy with my PCP or my Gastrolgeist and I have been researching other Docters in SW Pennsylvania. There is an integrative medicine center in Pittsburgh that peeked my interest.

Anybody have any opinion or insight about integrative/holistic medicine and treatment of patiants who have celiac-disease.

[IrishHeart]

Depends on WHY you are consulting one.

Do you need follow-up blood work, testing, that sort of thing? Naturopaths cannot do that. MDs who are "integrative" can, but they may not be covered by insurance.

Do you need dietary advice (you can get that here for free )

Want my HONEST answer, based on my experiences?

[lloydke]

My experience with the medical community has not been a positive one. A pill for anxiety, another pill for headaches, another for stomach cramps, a referral to shrink, another referral to a gastroulogeist, another to a nuerologist. I need a MD that is able to see the big picture instead of treating everything individually.

Integrative medicine Medical Doctors seem to be making attempts to break the cycle of treating symptoms and refering to specialists, however I'm concerned that they would be like going to witch-doctor.

Specifically, when I the most sick I had problems with numbness in my hands and feet. On the Glutten-free diet the majority of all my symptoms disappeared, however I still have numbness in my right hand diagnosed as carpol tunnel syndrom. Given the the close relation to celiac disease and some nuerological problems...

I just concerned that my current Doctor has closed the book on those issues and in his mind any continued problem is completely unrelated and it might be. But then again the anxiety, and headaches, and IBS, and the canker sores were all unrelated too.

[IrishHeart]

You sound like me and a thousand others on here. I had the same experiences trying to get a DX.

Symptom-treating us and we're still having symptoms, so it must be a psych issue. Bah! no it wasn't.

Some neuropathy takes forever to heal, if at all. (according to my celiac-savvy doc) I still have some parasthesia, but most of it has resolved.

How are your B-12 levels?

How long have you been gluten-free?

If you really think it will help you, you should go see him/her.

An integrative med doc is an MD who also uses alternative treatments and supplements (i.e. he has a ND and an acupuncturist and a massage therapist, etc. on staff)

It's a big $$$$$$ proposition.

After seeing dozens of docs for years, I decided to try Naturopathy and an Integrative doctor. I spent THOUSANDS of dollars on "herbals/homeopathic potions/supplements" and they left me undiagnosed for another 3 years. This one IM doc -- did not LISTEN to me and had me pay for IgG testing that did not detect the CELIAC. He wanted me to have acupuncture, massages, and dangerous and expensive chelation therapy for "heavy metals"....what a load of crap. I did not do the chelation, as everything in my gut said "this is wrong". I was so ill, and I was desperate for relief. He took advantage of that, IMHO.

When I got WORSE instead of better in his care, losing more weight and my brain function going downhill, I realized it was useless. I was dying and my hubs and I felt helpless.

I figured out I had celiac myself--by researching endlessly and realizing that THIS was the underlying cause of all my health problems!-- and brought it back to my PC doc and the rest is history.

If I knew back then what I know now? I would have stopped that madness quicker. When I wrote a letter and told that Integrative MD that I had Celiac all along- he left me a message saying " Sorry we could not satisfy your needs here at the Center." WTF?

I should sue him and OWN that fancy integrative health center. I see he has opened a second one--taking $$$ from people and not resolving their issues.

Again, this was MY experience and others may have better stories for you. In the end, YOU HAVE TO BE YOUR OWN BEST ADVOCATE.

I wish you well.

[Michelle1234]

I've had excellent results with mine. Here are some examples.

Had chest pain. Went to ER. Did full cardiac testing. Eventually said you have GERD here take this prilosec. No testing to diagnose GERD, just eliminated cardiac possibilities.

I didn't believe the diagnosis and when I did research on prilosec I learned about the very serious side effects.

I did some research and went to a holistic MD. This was the first time I had seen one.

He did battery of tests. Came up with gluten intolerance. Went gluten free and chest pain went away.

Holistic Dr. is out of network for my insurance and so I use regular Dr. for yearly physicals etc.

2nd example, years later.

Regular physician diagnosed ovarian cyst through ultrasound. Had lower pain in abdomen. Recommended seeing how it went and retesting after 6 or 8 weeks. Go to hospital if it ruptures. Maybe surgery in the future. Went to holistic Dr. Recommended some home care procedures with castor oil packs and DIM for estrogen metabolism. Symptoms started to go away almost immediately.

3rd example. Full body itchy white pustules. Regular Dr. did test for food allergies. Tested positive for many types of diary, meat, eggs, vegetables, fruits and grains. Regular Dr. said don't eat these. But this left me very little I could eat and I had stomach pain as well as skin itching that only got worse if I itched it. Went to holistic Dr. who did a battery of test, full digestive profile. Determined I had yeast infection in the gut, a lack of all digestive enzymes and was low on one major probiotic strain. Recommended fairly pricey set of supplements for 8 weeks. Took them and can now eat all allergic foods again with no problems.

Alot depends on the quality of the Dr. you get but also on you and your willingness/interest to research for yourself so you can decide if what your being told makes any sense (same thing applies to regular Drs). I have also had no problem when something the holistic Dr. recommends doesn't work telling him it isn't working so he can recommend something else. I don't always do exactly what he tells me but I do research everything he recommends and then make up my own mind as to whether it seems like it will be helpful. However I also do this with the regular Drs.

[beachbirdie]

Not to happy with my PCP or my Gastrolgeist and I have been researching other Docters in SW Pennsylvania. There is an integrative medicine center in Pittsburgh that peeked my interest.

Anybody have any opinion or insight about integrative/holistic medicine and treatment of patiants who have celiac-disease.

My doc is an integrative MD, but is not a major wacko witch doc type. She uses diet and other good health practice first, does not use homeopathic stuff, and would be the first to slap a patient in surgery if cardiac bypass is what would save their life.

She was a regular mainstream MD until she got some health issues, she figured out what worked (NOT big pharma) to really fix her issues, and applies that problem-solving to her patients.

Sorry to say she is west coast.

The best thing to do is not look for a specific "type" of doctor to help you, but instead to find one that others have had success with if you can and one with whom you can build good rapport. I know people who have gotten great treatment for thyroid from their psychiatrists, great treatment for celiac through their hematologists, other conditions from docs who were also working outside their specialties. We have a local nurse who runs a celiac education center in town, she says there's not a single GI doc in town that she'd send anyone to for celiac.

There are going to be jerks and keepers in every specialty. Sad to say, a large number of people here (including me) have mined through a lot of jerks before finding our gems!

Interview them. Find out what their philosophy is, how willing they are to listen to you if you come in with ideas. Are they willing to partner with you, or are they going to have a god complex.

As another poster said, it is up to you to become educated on your body and your health, and do the research to find out if what your doctor is telling you makes sense.

[IrishHeart]

I had another thought for you.

Call your local Celiac Support group or hospital and ask for a doctor who deals with Celiac patients and their after-care.

Also, start a new thread in the DOCTORS section here (this is how I found my new wonderful & attentive GI doc)

Entitle it:

NEED GOOD GI DOC IN ________________ (largest big city/area where you live)

Not only did I find my guy, but I have been able to point 3 others to him as a result. He's been relentless in helping me with follow-up care, but I also TELL HIM what tests I think should be run.

Again, I did not mean to turn you away from trying an integrative med doc, I was just telling you my unfortunate experiences.

You could very well find a good one!

Good luck, hon!

[mamaw]

I posted the other day for Pgh area but I guess I forgot to hit the send !!!!

I know a good gastro group in Pittsburgh, Pa but they are not alternative docs...if you are interested just let me know... I run a support group...

[lloydke]

mamaw

I would appreciate info about the gastrologist and your ministry. Thanks for your offer.

[lloydke]

IrishHeart

Your input is greatly appreciate. It seems to me as group the only people who understand people on gluten-free diet are other people who have had the gluten-free diet chosen for them. Unfortunately this often includes the medical community and like any group of people seeking help for their pain we are often taken advantage of and are misunderstood.

I am sorry for your experience that you shared, It should not be like that. I understand-- Keith

[IrishHeart]

Keith,

It looks like Mamaw has come to your rescue!

I hope you get the help you deserve.

And you always have all of us on here, too

IH

[mamaw]

Hi Keith

I'm sending the docs name & info via pm to you...