Nutrition and the Digestive System, eCornell Class—Trying to Figure Out Why Gluten is The Enemy

 

Someone asked me recently for tips on going Gluten-Free. In some ways it's easy for me. I've not once cheated and eaten gluten on purpose. No matter how tempting the cupcake or bread might be to someone, I see it as poison. I find flaming pain to be quite inspirational. 

The reason I took eCornell's class on Nutrition and the Digestive System  is because I wondered how I could have such trouble with gluten when I'm not Celiac. It's an interesting class. We covered the following:

• Sympathetic/Parasympathetic Systems
• The Autonomic Nervous System
• The Physiology of the ANS
• Digestion and the Mouth
• Saliva Production
• How to Evaluate Studies
• Nutrition and the Digestive System
• Digestion and the Stomach
• Digestion and the Small Intestine

There's a lot to the class but Gluten and Celiac are covered along with Proteins, Gastric Emptying, Dietary Fiber, and the Geometry of the Small Intestine/and Structure. Inside the small intestine are structures called Villi that absorb nutrients. If you are Celiac, gluten causes intestinal collapse and your villi retracts (for lack of a better word). 

It's a fascinating class and I'd like to eventually take all the classes in this series. There was no real answer to why gluten causes me to develop Interstitial Cystitis. I had to assume gluten causes inflammation for me everywhere and maybe it's worse in certain systems. I have Sjogren's Syndrome which is why I'd decided to try giving up gluten in the first place. It took me some time to figure out what all had gluten in it, but within a week of figuring that out and quitting it I never had another bladder spasm. 

My Urologist was rather amazed and I may have been among the first to graduate from ever having to see her again. 

The difficulty in eating gluten-free is real. Gluten is hidden in most everything. Once I got "glutened" by chewing gum. Another time by mints. Cough drops. Dried fruit. Salad Dressing. Chocolate. Those were times when a gluten containing ingredient was hidden or overlooked. Apparently dried fruit can sometimes involve flour in processing. Malt and barley derivatives hide in ingredient lists and they're gluten. So quitting gluten is more of a process as you learn to avoid it and difficult to do perfectly from day one, or to do for only a few days to see if it makes you feel better. 

One thing I have learned even before this class, there's no bread or cupcake worth flaming pain. One thing I learned after this class? I'm not going to solve "gluten-sensitivity" as so many medical professionals call it (as though it'll cause a wee tummy ache or possibly a few hives), but I can avoid it and that really works beautifully for me. 

Interstitial Cystitis and Other Auto-Immune Bullshit

There are things I want to do in life and curling up in my glamping cabin in Carolina with raging Interstitial Cystitis isn't one of them. Traveling is one of my favorite things to do. One thing I worry about when traveling is getting hit with one of the gremlins of my mostly manageable autoimmune problem (Sjogrens Syndrome).

Interstitial Cystitis is the one I worry about when flying. I make sure I get an aisle seat in case I need to get up twenty times an hour. Sitting too long on a hard airplane seat or getting dehydrated can kick off a flare. Normally I use that as an excuse to upgrade my economy seat to one of the cushier comfort seats.

Delta Comfort you rock!

Sometimes I can't swing an upgrade. Don't you hate how money is so damn finite? Me too. When I can't manage it, I suck it up and fly in the hold or wherever, but I go anyway. Because I'm not letting this thing stop me.

I figure I can be miserable anywhere. It might as well be in Greece!

Or Cleveland, or Charlotte, or wherever the muse takes me. Sometimes that is right here at home in the shire. 

Since dehydration can also be brutal, I drink a ridiculous amount of water when traveling. It's ironic because I probably get up as much to wee that water back out as I would when I'm having an I.C. flare. At least it doesn't feel like lava. 

Is that TMI?

We all have bodies. We all have trouble when they malfunction. Talking about my aches and pains bores me. But I have a point here.

When my mother-in-law, Gummy, was struggling with dementia and Alzheimer's, the one reaction that upset me most was when it was treated as something slightly embarrassing. It was bad enough that she felt ashamed of her mental shortcomings, but to have it treated as something other than a horrible medical condition was more than I could stand.

Not talking about Interstitial Cystitis because of flaming bladder spasms or the need to pee doesn't sit well with me. I will speak of embarrassing truths. When a friend with M.S. whispers to me that she can't go out today because she's having an I.C. flare, and that her doctor told her it's the new normal—I will say what's in my heart and experience.

I don't believe that. There's a lot you can do for this problem. 

Sometimes nothing will work. But sometimes dietary changes or simple over-the-counter meds can make a world of difference. 

So if you have Interstitial Cystitis or bladder spasms (or even frequent trips to the loo), and you've seen a doctor and know it's not a UTI, here's a list of what works for me. I hope it helps you!

• Some baking soda dissolved in water. It can quickly lower the acidity of your urine. That burning feeling usually goes away when I do this. (If it works ask your doctor for sodium bicarbonate tablets. It's easier to travel with. You don't want to carry a vial of white powder into another country.)
• There's a product called Prelief. It's OTC, but as I've said before it's difficult to find in stores because us I.C. people buy it all. Meds and I don't work well together, but this is as innocuous as Tums. 
• White Tums. My urologist recommends these. Again it can help lower the acidity of your urine.
• Marshmallow Root Tea is purported to help line the bladder, soothing those tiny cuts that make acidic foods bother it. You have to drink it daily.
• According to The Better Bladder book, I.C. might be an allergic reaction that causes inflammation. They recommend Nettle Tea because it's a natural antihistamine. Since Marshmallow Bark didn't work for me, I've been trying it.
• Thermacare stick-on heat packs are magical. I get the ones for your neck, but I don't put them on my neck. The heat helps relax the pelvic floor muscles. Go ahead and try to wear it through airport security if you need more excitement in your life. (Tip: It might be smarter to put it on after you go through!)
• A hot bath is excellent too. 
• Sleep. You have to sleep. 

My last flare was particularly brutal. Stress definitely makes I.C. worse. At least I now know I can fly during a major flare. I can do this miserable thing and still have my amazing life. While it was awful, it was good to know I could handle it. 

For a couple days afterwards I ate mostly alkaline. That meant celery-cucumber smoothies. There are only so many foods high in alkaline. Unfortunately you can't subsist on them for long. That's when Prelief and baking soda come in. 

For me I find that these life hacks work—except those times when nothing works. 

I try to be scientific about this, but I'm not a scientist. With this problem you never really know if something is working, or if the problem was naturally subsiding. But while in the middle of a wicked flare, when it feels like you drank napalm and everything in your pelvic floor is spasm-ing and sharp, if you take a couple Prelief with a drink of blended cucumber and celery and it lessens, I say you're onto something.

My spasms tend to ebb and flow. I have to be very careful about what I eat. Caffeine drinks, chocolate, and red meat are usually on my hell no list. They are brutal for me. Of course I cheat at times. You know those times when you think you've got this figured out, and having two Chai Lattes suddenly seems like it should be okay? Maybe you imagined or assumed that connection the last ten or twenty times you had it.

This is also known as being a slow learner.

The best I've dealt with this problem is when I don't eat flour, sugar, or red meat. After reading more about auto-immune problems and I.C., I decided to go completely gluten-free. It felt like jumping on a bandwagon, but I do know I have a wheat sensitivity that I like to ignore during pancake season. 

The thing I notice when I eat bread and pancakes is that I get tired. It feels like after Thanksgiving dinner. A nap is necessary. 

It's only been a couple of weeks, but being gluten-free combined with Nettle Tea seems to be helping. At least I haven't had hives or rashes, or even an I.C. flare lately. 

Going sugar free is really tough. At least it is if you're a sugar crack-ho like me.

My body objects. The part of my brain in charge of sugar-highs (about 80% of it I think) keeps reminding me where they keep the chocolate at Target, and that summer is made for ice-cream, and life is short, and what about cake?

Day two and four were headache days this past week. I recognize those headaches as the kind I get whenever I detox from sugar. Lots of water and an occasional Advil helps me. 

Kicking the Sugar Demon deserves its own blog. I'll get back to you on how well I'm doing in a month or so.

Today my brain had a lot to do, but it managed to realize that there is no gluten or sugar in certain kinds of chicken wings.

You have to give your sugar-addicted brain credit when credit is due. Despite the headache, it managed to come up with that. Way to go brain! I gave it some wings. So far so good.

Blogging from the mosquito-infested wilderness
WITH NO SUGAR

Like I said previously, how do you really know what's working and what is coincidence? I just keep at it, tossing in plenty of setbacks and mistakes. But the important part is that I keep going with it. If I can manage to travel with flaming I.C., I think I can handle living my life without sugar and gluten. Again. I mean it this time. Again. 

If your brain has managed to come up with some excellent life hacks when it comes to giving up sugar or gluten, please share! With I.C. I can't have artificial sweeteners at all. So I can't even try to fake my brain out. Not that it'd fall for that. 

Interstitial Cystitis, Bladder Spasms, and My Charmed Life

It's two o'clock in the morning and I've been racing to the loo about every three to five minutes for the past three hours.

I'm wearing those Therma Care heat wraps. One in front and one against my lower back, but the chills won't stop.

My husband is snoring comfortably in the next room.

Part of me wants to wake him up. "Hey! I'm miserable!" But any human interaction right now would make me more miserable.

PEE BREAK!

Excuse Me.

Back. I went nine minutes that time. Between the breaks I mean.

It's not the non-stop peeing deal in the middle of the night that gets you. It's the pain. Liquid fire.

Did I mention that I'm in the Canadian wilderness? No electricity. No flush toilet. Yep. I'm doing this with a compost toilet. That wouldn't be so bad if it wasn't having a problem that makes the bathroom smell like that scene in Slum Dog Millionaire. 

It's to be fixed tomorrow. Meanwhile I'm going non-stop tonight and fighting dry heaves from the problematic compost toilet smell.

I do not feel sorry for me.

I just spent the past few weeks at a writer workshop on an idyllic island in Greece. 

I know, right?

Suffer, bitch. (I hear you.)

I am. I promise.

Why is it that when something great comes my way I feel I deserve suffering? Things have to even out, I suppose.

PEE BREAK.

If we count these spasms like labor, they're nine minutes apart. Unlike labor pains all I'll birth from this is a very tired morning. Also, the goal here is to have them further apart, unlike the baby-producing kind.

The heat pads aren't just for the chills. They're to relax the pelvic floor and hopefully help the spasms slow. 

PEE BREAK.

Nine minutes still.

Lucky for me I don't get this very often.

Over the years I've accumulated an arsenal of tricks to prevent bladder spasms. I've had this for years during most of which I had no clue what I had or why.

The symptoms are about identical to a UTI (Urinary Tract Infection). So the first year or two it happened I'd end up at the doctor for testing.

PEE BREAK.

About nine minutes still.

Damn. It hurts.

Anyway, when I went to the doctor it was usually after the spasms had stopped and nothing showed in an exam or urinalysis. Or worse, white blood cells showed and treatment for a UTI was usually broached.

I knew it wasn't a UTI. I'd had enough episodes and enough past experience with UTI's to recognize this as different. That's fortunate for me because UTI treatments can make my bladder spasms (caused by Interstitial Cystitis) worse. Especially if I got rote recommendations like drink cranberry juice. OUCH.

If it's I.C. you have, raising the acidity of your urine will cause more discomfort. More spasms. More pain. Keeping it alkaline is what helps. That can mean eating less acidic foods and more alkaline foods. 

In a pinch some baking soda dissolved into some water really helps Interstitial Cystitis. (1/4 tsp in about 1/4 cup of water.) Yuck. But it usually works.

There's also:

• Drinking a lot of water.
• Eating a high-alkaline diet (ask google).
• Avoiding acidic foods.
• Figuring out which high-alkaline foods bother you just the same (supposedly lemon is alkaline. So I made lemon tea with lemons tonight. Because I don't have any safe tea here. I used the entire lemon and the rind. About seconds after I drank it my bladder set itself on fire in protest).
• Get some Prelief. It's like Prevacid, only instead of for heartburn, it's for bladder spasms. It's tough to find because I buy it all. But Amazon. It allows you to get away with eating more acidic foods. Woman cannot live on radishes alone.
• My doctor recommends Marshmallow Root Tea twice a day. It helps to line the bladder and protect it. I know that makes her sound total California, and there are meds for this, but I don't tolerate meds well and the tea actually seems to work.

• Find a Urologist who has experience with I.C. if you have it, because I'm no expert. I just happen to have it, so I'm over-sharing in case you do too.

My Urologist calls my I.C. "the junior kind", meaning it's not as bad as the full blown kind. Sufferers of that kind have my undying sympathy because this shit blows.

I have what the doctor also calls "a junior autoimmune" problem. (Sjogren's Syndrome.) Apparently the two go hand in hand sometimes. I've had them both for about ten years now. 

PEE BREAK!

That may have been about twenty minutes!

Woo-hoo! Life is good.

Celebrating that achievement I then fell asleep on the couch for an hour. The couch without mosquito netting. I may need a blood transfusion now. This is the Canadian bush.

My Junior I.C. comes and goes. The bulk of the time I can eat all those acidic foods sufferers shouldn't without any real problems. Until it is a problem. Then it's too late.

A good deal of my spasms happen for no discernible reason and when I've been doing everything right. 

At least this episode didn't kick in during an international flight. Or on a bus in the middle of Greece. Or a ferry. Or a train. 

It's easy to look on the bright side because this problem has plenty of room to grow. It only stops me from doing what I want a few days a year. 

So I'm grateful.

Usually I can feel it coming. I have a prescription for baking soda tablets (Sodium Bicarbonate). It's easier to travel with than a box of suspicious powder. I take them with plenty of water. With Sjogren's Syndrome drinking water is pretty much a part-time job anyway. I take life with plenty of water. After which I pee like it's my other part-time job. 

I'm judging all the bathrooms in the world because I've used many of them. That said, I've yet to meet a single one I wouldn't use in an emergency. My standards could not possibly be lower when it comes to bathrooms. That should be obvious considering the whole Slum Dog Millionaire compost one I've been weeing in all night.

But I've traveled some of the world, hiked the Grand Canyon, and have lived my life in spite of these issues. Because eff issues. You can't wait for shit to be perfect before beating a path to your charmed life.

Mind you this morning I'm cautious. (It's morning now. I fell asleep on the couch again. The mosquitoes ate the last of my blood. I hope they all get bladder spasms now.) I didn't portage out anywhere. My husband did. He's going to boat-hike-raft-drive his way into town. He'll probably go to Tim Horton's for one of those Maple Sugar Frosted Donuts with Crumbled Bacon. I dream about those. No, I've never had one. They're on the acidic foods list. I'm staying in my cabin eating unwashed celery and peeing in the grody compost toilet while waiting for my pelvic floor to get its shit together. 

At this point I can tell when it's wiser to be still. That doesn't stop me from going to the baseball game when I have tickets during a flare.

It's a calculated risk.

If I can sit in the blazing sun (heat helps) with plenty of water and a ladies room nearby, I carry on.

I don't want to let this control my life.

But I do respect it and plan accordingly.

A temperamental bladder is like taking a high-maintenance two-year old in public. You've got to plan and weigh your options. During a full-blown episode, when it feels like I drank napalm and a crazed Toy Fox Terrier is gnawing on my bladder like a squeaky toy he's trying to get the squeaker out of, then I stay put. 

And, no, I don't wear Depends. This isn't a sneeze and tinkle thing. It's liquid nitrogen in the bladder while that organ and its surrounding friends go all epileptic. It's pain, chills, and enduring.

Until it's over. 

When it's over, grab life by the girly nads and enjoy every non-spasming, pain-free moment.

Forget about I.C. Junior.

Just make sure you have your arsenal of anti-spasm and acid-lowering tools nearby, and go find your charmed life. And if you want to tell me about your bladder habits, the grossest bathroom you've peed in, or your charmed life, let's over-share below.