Celiac Sprue & Doctor Too!

[RKB-MD]

Yes, I have Celiac non-tropical sprue, and I'm a USA trained M.D.

Sorry, but I'm not a GI doc, nor a family practice/ general practioner. I'm "just" an anesthesiologist. And, I can assure you that all the meds we use in anesthesia are gluten-free!

I do know the physiology and molecular biology behind our disease, and I'll be happy to contribute what I can to the conversations, but as you all well know, we as people with CS usually know more than the "average" doc about this problem.

Ask away, I'll be asking you too...

Russ

[Rikki Tikki]

Hi Russ:

Welcome to the board. I probably wouldn't give a shout out to loud to being a doctor here. So many of us were so sick for many years and were often told we were just sreessed, depressed etc. that the whole doctor thing has a bad rap

So how often have you seen patients with celiac, or knocked out? When were you diagnosed? Who diagnosed you? How long were you sick? Do you feel the medical community took you seriously? Do you think you were treated differently because you have the M.D. behind your name? Don't take it personally, I just haven't met an M.D. with this before

Are you really a doctor?

[Ursa Major]

Hi Russ, and welcome to this board. I hope you find the information you need here, and that you will contribute to our conversations. We all learn from each other here.

[queenofhearts]

Welcome, Russ, I saw your other thread & posted about Balsamic. It's true a lot of us have had... um... mixed experiences with doctors. But I will forever be grateful to the doctor who finally diagnosed me. (After a whole string who didn't, mind you!) Anyway I think it's great that you are here & I hope you are a light in the wilderness of the medical community... there's a lot of wilderness out there!

Leah

[hez]

Russ,

Welcome to the board! This is a great group to turn to for information and support. I have learned so much from this board. I look forward to hearing more!

Hez

[2kids4me]

Welcome to the board... I always ask to speak to the anesthesiologist any time my kids (or I) "go under"... if he/she isnt on the ball than it doesnt matter how great a surgeon you have...

It will be great to have you on board - maybe some insight about how to talk so doctors will listen .....and not tell us we read too much, are hypochondriac, or attention seeking...

I too am curious if you were diagnosed quickly or if you diagnosed yourself (?).. dont know if dcotors can order blood work on themselves. I hear they make the worst patients..

EDIT just answered most of my questions by reading your post in the "Coping thread" - New Member - Long Standing Cs (long Post)

[skoki-mom]

Yes, I have Celiac non-tropical sprue, and I'm a USA trained M.D.

Sorry, but I'm not a GI doc, nor a family practice/ general practioner. I'm "just" an anesthesiologist. And, I can assure you that all the meds we use in anesthesia are gluten-free!

I do know the physiology and molecular biology behind our disease, and I'll be happy to contribute what I can to the conversations, but as you all well know, we as people with CS usually know more than the "average" doc about this problem.

Ask away, I'll be asking you too...

Russ

Russ, as an anesthetist, I wish you could tell the guy who gave me my last endoscopy that Midazolam has no analgesic properties <sigh>. I read my chart after the scope and found a serious lack of Fentanyl, lol. I'm an RN and therefore a dreadful patient. However, I want to marry the anesthetist I had when I was in labour, I have no idea what he looked like or what his name way, but I LOVE HIM! LOL!

[2kids4me]

However, I want to marry the anesthetist I had when I was in labour, I have no idea what he looked like or what his name way, but I LOVE HIM! LOL!

OMG too funny - I had the same thoughts when i was in labour - I just kept repeating thankyou, thankyou, thankyou after the epidural as I sunk down into the pillow, I dont remember his face but he had a funny little grin as my husband said thankyou about 3 times too! Guess I was a little cranky! LOL

Again, welcome Russ!

[RKB-MD]

As I posted earlier today on the "Coping with" forum:

I just discovered this web-site and wanted to introduce myself and say a big HI! to all the celiacs on this board.

I’m a 38 y.o. male physician who has had a life-long gluten intolerance. I was diagnosed at the age of 2 when my parents brought me to an enlightened pediatrician who took one look at the malnourished, sickly, well below statistical norm child and said – “Sprue”. This was after 2 years of my mother being told that my problem was that she “worried too much” – lovely state of medical affairs in the 60’s. My parents, along with a wonderful Pedi GI doc decided not to subject me to a biopsy, but instead used the elimination diet with wonderful success. It was miserable being a kid who always had to bring my own cake to other people’s birthdays, and I hated that my mom was constantly calling school and camp to arrange for my dietary needs. As I grew up I rebelled on my diet, intermittently being ill (tons of D), and not understanding why I felt so worn down all the time. Every time I went back to college after having been home on a gluten-free diet, there would be a transition period of D until I guess I destroyed enough microvilli. The constant DH on my feet drove me crazy – especially as I didn’t know what was going on – thought it was just athlete’s foot. Remember, this was the dark ages of the 80’s.

Dating was always miserable – made me feel like I had as a kid with all the questions for waiters in front of a girl who immediately assumed that I was “weird” based on this diet (of course no other reasons LOL). And, if I avoided the subject with the waiter, I rued it afterwards (yes that was another joke).

In medical school I was HLA typed (match) and the IGA bloodwork came about – no surprise giladin positive. Residency was tough as even hospital cafeterias have no clue, and the fatigue of the work on top of the diet was miserable.

Fast forward a few years and I “grew up” and became super-strict on the diet. Also, society changed greatly and most restaurants have gotten much better about the issue of food allergies. During an all too short marriage (5 years) I became a pretty good cook out of necessity – restaurants are still hit-or-miss, her family was also very accommodating, although they never really learned about reading labels completely. The label rules that were enacted in 2005 (?) have helped, although I have found plenty of errors and omissions in the “Contains: Wheat” category. I really appreciate the specifics on the “Modified Food Starch” and “Hydrolyzed Vegetable Protein” these days. The Atkins diet fad has been wonderful as no eyebrows are ever raised when bread is refused, or meals ordered sans bun/bread/etc. I now have some wonderful friends who, when we cook together, really watch out for additives and read labels too! Fortunately, I’ve just met a woman who not only has friends who have been recently diagnosed, but also is understanding and kind about the whole meal issue – it doesn’t hurt that I can cook! These days I keep to pretty much a no-carb diet (other than fruits, veggies, and occasional rice and spuds). Travel, especially to foreign locals, is still super tough – I used to know how to say “Corn tortilla, NOT wheat” in Spanish.

The replacements are out there, and I respect everybody’s individual opinion on matters of taste and palatability, but I will say my personal experience for the “must have baking product needs”: Kinikinik (sp?) makes the best mix for pizza crust, Fern for yellow-cake, Pamela’s Products for pancakes, Energy breads (must toast first!), and while I am forgetting the brand as it has been so long since I had it, there is a pasta made from tapioca flour that is excellent!

I empathize with all recently diagnosed individuals, and their spouses and significant others. It is a tough diet. For those who are with someone who refuses to help or comply – DTMFA! For those who have irritating or downright hostile coworkers/ church members/ etc – just look them straight in the eye and say “steatorrhea” – when you start to define it, and they start to look ill, just laugh and walk away. If anyone DARES to hide wheat/oats/ barley and feeds it to you purposely, I’d bring them a Tupperware container with the results!

I found this board today after a Vietnamese restaurant meal on Wednesday of this week that has caused probably the worst reaction I have had in a long time and I Googled “Banana celiac”. I didn’t pay attention to the soy sauce issue (bad me!), and I believe that there was a lot of white pepper in the pepper sauce. Also, I have the (non medical fact based) impression, that the long-standing super-strict compliance with my diet has made my jejunum super sensitive.

That was a super long intro, and now I have some questions for the other members.

I’m pretty well versed in what to avoid, but a brief survey of this forum has raised some new questions in my mind.

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

-I’m sure I’ll come up with some more…

YES - I am a real M.D. - At least that's what the fancy paperwork from the National Board Of Medical Examiners states. I graduated from a real American University, with a real Medical Doctorate.

My knowledge base and practice is in anesthesia - and I am so happy that someone was able to help you through whatever you went through (O.B. especially, we love you too; it is a joyfull time, especially with no pain! - but I have a special connection with those who have to deal with surgical bowel issues having been there myself). I recently took care of a good friend with Chron's, and had no problem holding her as she cried after surgery. And, as you can read above, I have dealt with CS my entire life and know a lot about it. I am happy to be part of the community.

Russ

[RKB-MD]

Also to Skoki-mom:

Actually I'm an anesthesiologist - the difference is that I'm an MD, not a CRNA. That and Versed is an amnesic (no memory) vs. analgesic (no pain). Personally I push tons of Propofol for those who are getting 'scoped (upper or lower) as that's what I'd want when I have to get mine. BTW: If you have an egg allergy TELL YOUR ANESTHESIA PROVIDER!

Just wanted to clarify.

Russ

[Nantzie]

Welcome to the board!!! It's nice to have someone here who not only is an M.D., but who also has had lifelong experience with it, including going on and off the wagon.

I've never heard of the banana thing. I'll have to give it a try the next time that happens. Makes a lot of sense.

Here's some of my favorite products:

Pamela's Amazing Wheat Free Bread Mix. You don't have to toast it to eat it. It's just that good. The closest tasting to wheat I've come across. It even smells like wheat bread. My husband even likes it and makes PB&J out of it. My kids request the toast. I like making BLT's out of it. It's just fantastic.

Ener-G Wheat Free Crackers. Very small box, but worth every penny. I buy it by the case of 24 through www.glutensolutions.com for $60. Reminds me a lot of a Carr's Water Cracker. Doesn't crumble apart. Even my kids like it.

Bob's Red Mill gluten-free Flour. I use it to make sauces and gravies. I can't taste a difference at all. I even used it to make a cheese sauce to put over veggies. Just use it the same way you would regular flour to make a roux.

I'm glad you found us here. It's a great board with a lot of wonderful people.

Nancy

[2kids4me]

This kinda off topic but felt I had to reply....

YES - I am a real M.D. - At least that's what the fancy paperwork from the National Board Of Medical Examiners states. I graduated from a real American University, with a real Medical Doctorate.

My husband frequently uses the line you used and emphasizes REAL. He is a veterinarian. I have lost count of the comments like - so did you ever want to become a real doctor? He says "Gee, here I thought I was, and they let me use DR in front of my name and everything".

Did you have to go to University? - he just sighs and says - yup 6 years.

.. vets LOVE propofol too - best thing that happened for dogs and cats! Next to hydromorhone for orthopedics!

re: bananas - I dont know what's so magical about them, but my kids will always ask for one when they are recovering from a stomach ache, rice works well too. The kids also say "Mini Go" yogurt helps them feel better.

[Nantzie]

Also...

DTMFA?

Haven't been able to figure that one out... It's like being behind a car with a vanity plate that you can't quite decipher.

KWIM?

Nancy

[debmidge]

Dr. Russ,

Don't take it personally if a thread happens to be angry towards M.D.'s.....sometimes a member vents about their bad experiences with past / present doctors.

We had a Dr. (who had celiac) once on the board who really took it too, too personally when members voiced their mistrust about doctors and this Dr. refused to ever come back on the board. Instead of just ignoring our "venting" thread the Dr. tried to defend others in the profession and got upset and left.

So just don't take our ranting and venting personally...who knows, you might want to join in...

Anyway, glad to have you as a member ....

[Guest nini]

of all the Dr.s I've been angry at, ONE of my most favorite beloved Dr.s is an anesthisiologist. He worked for years in hospitals, now he is specializing in pain management for people suffering from chronic pain. I LOVE HIM!!!!! When I have vented about bad Dr.s I have been negligent in mentioning my tremendous amount of respect and admiration for this particular Dr.

maybe something about being an anesthisiologist makes you more compassionate? I don't know. I've always had great experiences with anesthisia (and I've put under more times than I like to remember). They ALWAYS take the time to listen to me and pay attention to my allergies and seem so knowledgeable and WILLING to help.

Again, yeah, don't take any of the "angry at Dr.s" threads personally. They aren't directed at you! We want YOU to stick around! (we wanted the other guy to stick around too, but he took our rants too personally)

[RKB-MD]

I purposely posted my physician status. I know many of you have not been treated well at the hands of some MDs. There are lots of issues with our current medical system. One reason I chose anesthesia is that I didn't like the fact that insurance companies dictate how much time an MD can spend in a clinic visit. When was the last time an insurance provider went to medical school?

I feel fortunate that I have known about this my whole life. It would have been nice if I had been diagnosed sooner, maybe I'd be 6' like my dad??

I've got a pretty thick skin, and I'm pretty militant about dietary issues. For example, it chaps my a$$ (in more ways than one) that regular peanuts get banned on flights and the only other choice are pretzels...

DTMFA - Dump The MF Already.

[Rikki Tikki]

So what's wrong with white pepper?

[RKB-MD]

I just did some research on the whole pepper question. I've never understood why white pepper was on the list of "avoid" foods (from WAY back in the late 70's - yet still being used in the 90's at a world famous hospital). It makes no sense as pepper is a non-trigger, yet it still shows up on the unsafe and possibly unsafe lists.

The best I can come up with is the possibility of cross-contamination during processing. Once again, we are better off grinding our own from whole peppercorns...

[tiffjake]

Hey Russ! Nice to meet ya! Welcome to the board!

I have never heard of the banana thing....but it sounds good to me. I try to avoid them simply because of the sugar content. I am overweight, one of the "rare" celiacs (according to many docs), so I am watching my sugar these days.

I am trying to remember your questions........

Oh! Taco Bell! I have read that the southwest steak bowk (with out Jalapeno sauce) is safe. I have had it several times with no problem. You should check their website! I think they list there.....and Wendys is my favorite, love their chilli when I need a quick-fast-food-meal.

And alcohol, I don't drink too much anymore. Just wine. But I have read that triple distilled vodka's are fine, especially the potato ones. But I know that there are people on here with more details than that.

Anyway, nice to meet you!!!

[eleep]

Welcome! If the general groan-inducing title of this thread is any indicator, you'll be a great addition to the community!

eleep

[plantime]

Welcome to the board! Everyone else seems to have said what I wanted to say, so I'll just say WELCOME!!

[trents]

Russ,

I did a little research on Taco Bell and near as I can figure their hard tacos and refried beans are okay for most celiacs. The corn tortillas contain a little oat meal so they don't advertise them as being gluten free (cross contamination issue). Most Celiacs, however, are okay with a limited amount of oatmeal.

Steve

[elonwy]

Mainstream oats in the US are not ok. HUGE CC issues. Its not ok for Celiacs to oats that aren't grown specifically for gluten free use.

Here is the link to Taco Bells allergens list.

Open Original Shared Link

Elonwy

[2kids4me]

and the answer to the age old pepper question, white vs black....

A black peppercorn is picked when still green and dried in the sun until it turns black. A white peppercorn ripens fully on the vine before it is picked. Black pepper has a slightly hotter flavor and aroma. As with any spice, if you grind the pepper as you use it, it will have lots more flavor than if it was ground in a factory months ago and sat on the shelves in the grocery store before it sat on your shelf. So the question of how much to use is very much a matter of personal preference.

From a site where a chef answers questions.

Maybe it will be a question in Trivial Pursuit game

[trents]

Mainstream oats in the US are not ok. HUGE CC issues. Its not ok for Celiacs to oats that aren't grown specifically for gluten free use.

Here is the link to Taco Bells allergens list.

Open Original Shared Link

Elonwy

Don't misunderstand me. I'm not recommending eating mainsteam oats as a breakfast cereal. My point was that there is probalby so little oatmeal in the Taco Bell hard tortillas that many celiacs will not be bothered by the miniscule amount of CC on an occasional basis. At least, that is my experience when eating at Taco Bell. It certainly is a better alternative than a lot of other restaurants. Taco Del Mar is even better. They actually have gluten free offerings listed on their online menu but they are not nation wide yet. Mostly in the Pacific NW.

Steve