grousing on an empty stomach

[the_siobhan]

Work is dull and I don't get my lunch for another 23 minutes. Hence all the posts.

So I got all my test results. I tested negatively for celiac. That's it until I go back next year to get my esophagus re-scoped.

I don't seem to have any problems if I keep my bread consumption below a certain amount, so right now that just seems the easiest way to deal with the issue. And so far my "certain amount" is still pretty generous.

I gotta tell yah though, the whole process really got to me after a while. At every single stage I would ask questions about how I figure out what is causing this. And the answers I got from every single medical professional I talked to was identical.

"It could be caused by a number of things."
"OK, that's a start. How do we figure out which one?"
"We can't really. But if you take the drugs you won't have any problems."

Every time something goes wrong with me I have to be nagged to take it to a doctor. Shit like this is the reason why.

The thing is, I don't expect them to have all the answers. I get that there are huge gaps in our understanding of how the body works, especially in areas like allergies and sensitivities. But I do expect some... I dunno, some investment in the idea of prevention? Of health? Of something more than just sweeping up the broken glass after the damage has already been done?

I would have been happy with a, "Here are some things you can experiment with" or "This is some feedback I've gotten back from some of my other patients about things that make things better or worse." But that's impossible. They don't know what experiences their other patients have had. They've never asked. And if told, they havn't paid any attention.

I honestly do not believe that these are bad doctors. They do what the entire system is set up to do, and what the vast majority of their patients expect from them. They diagnose an illness, prescribe a drug that will alleviate if not fix the problem, and get on to the next patient. Hell, symptom alleviation is in itself an essential part of the process of healing. But it's frustrating to get that far and then have the process just stop.

I've reading more lately about how those in the health profession are disturbed by the number of patients who are turning to alternative medicines and therapies. I can think of at least one reason why that might be happening.

And now it's time to go eat my lunch. I will not be having a sandwich.

Comments

[lilactime.livejournal.com]

This was very much the situation when I was seeing an allergist. They were more than happy to stick needles in me to cure things I didn't know I had [1]. but when it came time to deal with the stuff they couldn't treat, I got nowhere. I had an allergist who came as close as he was legally allowed to diagnosing me with "multiple chemical sensitivity" - his suggestion on how to deal with it? Avoidance. I pointed out that avoiding people with perfume, places that had scented products, places that had been recently cleaned or pretty much every other person's home was utterly impossible. But that's the best he could do for me. To tell me to stay home.

I've reading more lately about how those in the health profession are disturbed by the number of patients who are turning to alternative medicines and therapies.

I can attest to this as well. When I broke my arm a couple of years ago, I was in the fracture clinic one morning and witnessed a patient having a strip torn off them by a doctor because the patient was looking up medical on the internet. When this same doctor finaly got around to me and wasn't willing to give me more than two minutes of his time, I pointed out that we, as patients, really had no choice but to turn to the internet for advice, as he certainly wasn't making himself available to answer our questions or concerns.

[1] They diagnosed me with a mould allergy, even though I didn't have a clue I had such a problem. It wasn't until after we moved last year, when my allergies completely disappeared, that we realized that the very serious mould problem in the basement (Charlotte's old apartment) had spread throughout the house.

[castironlocust.livejournal.com]

I'm definitely NOT an apologist for the medical "industry," but I'll give you a typical play on "Devil's Advocate" here:

Celiac Sprue is damned hard to actually diagnose correctly, all things being equal.

MOST of the symptoms that will present as recognizible for celiac are pretty much identical to IBS, so there's a whole lot of misdiagnosis between the two. In an effort to err on the side of caution, however (because we PRACTICE medicine, rather than EMPLOY medicine) it is a whole lot less damaging on a systemic level to treat someone for IBS than for celiac if the etiologies are similar.

Now, a lot of dieticians and gastroenterologists will probably tell you that a gluten-free diet - LIFELONG - will alleviate the overall effects caused by celiac disease and, in a lot of cases, IBS because refraining from the intake of gluten has shown that, over time, the surface layer of the intenstinal mucosa will actually kind of regenerate and heal itself completely.

Just out of curiosity, have you ever been on neomycin or an antibiotic therapy that included neomycin?

Please keep in mind I'm nothing close to a doctor or a specialist... I'm just curious.

All the best,

SWH

[the-siobhan.livejournal.com]

See, I didn't even get that much info. Just, "Are the drugs working? Yes? Then keep taking them."

As for the neomycin - entirely possible, but it would have been years ago. I haven't taken antibiotics for anything in a really long time.

[castironlocust.livejournal.com]

I would have been happy with a, "Here are some things you can experiment with" or "This is some feedback I've gotten back from some of my other patients about things that make things better or worse." But that's impossible. They don't know what experiences their other patients have had. They've never asked. And if told, they havn't paid any attention.

This is why I will ALWAYS ALWAYS ALWAYS turn to a Nurse Practicioner BEFORE an M.D. or hospitalist.

A doctor will prescribe you drugs. A nurse will more often than not try to save your life. There's a difference.

All the best,

SWH

Rewriting the Book

[theevilchemist.livejournal.com]

The big big problems with western medicine:

1). They are taught to treat ailments with drugs
2). They are only marginally about nutrition and downplay the importance of exercise and diet.
3) They know next to nothing about how drugs affect entire systems.
4). Prevention, what's that?

My mom has a hyperparathyroid and she's leeching calcium like nuts. She is also on Warfarin, so she's been told to avoid both Vit K and Calcium. She *will* develop osteoporosis because these dumb ass doctors won't do anything until she has an incident. I just emailed a Doc to see if she can have her hyperparathyoid removed with a radioguided minimally invasive procedure that her dumb ass doctor didn't know about.

You might want to try other grains besides wheat based. There are plenty including Quinoa, Amaranth, millet, Teff, Kamut Spelt. The 1st 4 are gluten free by design as they are not true grains. The last two are ancient grains, (not hybrids) and seem to be more tolerated by folks with less severe reactions to gluten.

Now, a number of these weird ailments are auto-immune disorders, where the body tries to protect itself from what it believes are "foreign proteins" and starts to attack endogenous tissue and all seem to be affected by diet to a varying degree. I'll spare you the vast body of literature on vegetarian diets and improved status of inviduals with these disease, but if you go to Nutritiondata.com (http://www.nutritiondata.com) you can browse the data base of a zillion foods. Pay particular attention to the anti-inflammatory rating of certain foods.

If you tested negative for celiacs, you might want to experiment with different pure grains to seee if it's one particular kind of food. For example, eat a bowl of oatmeal every morning and see how it affects you stomach.

Usually fiber is very very good for acid reflux IBD, and other ailments of the GI track. Whole oats and ground flax make and excellent combo. It's lowered my brother's glucose levels (he's type II), my other bro's cholesterol and completely halted my mom's Diverticulosis flair ups (6+ years now). Yeah, I've got my whole family on an oat & flax regiment.

I just made a nice 5 whole grain bread with an extra cup of 12+ different dehydrated vegetables powder. After I juice, I dehydrate the pulp and grind it into powder. It came out brilliantly.

Anyway, if you want to experiment, there's some suggestions.
jv

Re: Rewriting the Book

[the-siobhan.livejournal.com]

How much gluten to have to add to non-gluten grains to use them as a bread alternative? I've started playing around with some of them, but so far my results haven't been very edible.

The Answer is...

[(Anonymous)]

It Depends on the recipe. The gluten is what allows bread to keep it's form when it cooks, so low gluten content usually means dense wet bread. I usually add about 20% gluten flour to my whole grain recipes.

Soluble fiber found in stuff like flax can substitute for gluten in a way. I've had the best results kneading the bread by hand and getting a "feel" for the viscosity of the dough. When I think it's thick enough, I put it in the bread machine.

A thicker loaf won't rise as well, so you have to either

1). add more yeast than usual.
2). increase the rise time

or both.

On my 8 grain bread, I have the final rise set for 80 minutes. It takes that long. In total that recipe is 4hours 20 min from start to finish.

I'll look up some gluten substitutes at work tomorrow and see if I can come up with something you can use.
jv

Re: The Answer is...

[the-siobhan.livejournal.com]

I ended up testing negative for celiac, so I'm thinking it's not the gluten that's bothering me but some other part of the wheat grain.

So far I've found if I don't eat it every single day I'm ok, but I was thinking if I could find a substitute for those days when I Absolutely Must Have Bread, it would give my poor guts some time to heal.

I have some sample bags of amarinth, quinoa, buckwheat and spelt to experiment with. The gluten flour I bought said "1 Tbsp per 3 cups flour" but it's obvious that's not nearly enough.

[50-ft-queenie.livejournal.com]

But I do expect some... I dunno, some investment in the idea of prevention? Of health? Of something more than just sweeping up the broken glass after the damage has already been done?

And maybe some recognition of the fact that the human body is an interconnected system, and that the different body parts and organs don't function independently of each other? More and more, I'm seeing people seeking out naturopaths (who, incidentally, complete a 4 year program and need a B Sc. to apply to naturopathic college) because they're trained to look at the big picture.