It’s time we talked…

Hello friends! It’s been a while. Over one (1) full Earth year, in fact. Where have we been?! What have we been up to?! Why did we abandon you?! What gives?!

Starting last December (but even then, up to a year prior), after numerous ER trips, doctor’s visits, investigative procedures, and crash diet changes, Amy was diagnosed with Crohn’s Disease this last summer. For folks who don’t know, Crohn’s Disease affects your gut–it’s different for everyone, but generally, it can cause very intense abdominal pain, internal fissures, bleeding, etc. Imagine a really, really bad ulcer. The kind that lands you in the ER overnight. It can also seriously inhibit your ability to absorb nutrients. Scary stuff.

Doctors don’t know what causes it.

But the good news is that it’s not typically life-threatening, and there are a slew of (conflicting, unproven) ways to manage it.

There’s the medical way–steroid, immunosuppressants, surgery–and the non-medical way–i.e. diet. Given our commitment to addressing most of our health issues through what we eat, diet seemed like a more natural choice. Here is the Reader’s Digest version:

We charted what foods may be so-called “trigger foods”.  Amy eliminated coffee, most caffeine, red wine, and most booze. She eliminated almost all sugar for 3 months. Almost no honey, fruit, agave–and lots of Stevia (and all of its variants). She gave up gluten. We went raw again for a short time. We started a strict juicing regimen. She re-introduced dairy and eggs to her diet. She exercised more. She exercised less. She sees a nutritionist and takes a variety of natural, high-tech supplements.

To abbreviate (but hopefully not trivialize) things, it’s been a year of dietary turmoil. At last, though, she seems to be in a good place, to have found a combination of approaches and changes that work. And no immunosuppressants yet! I am unspeakably proud of her for sticking to her guns and working so hard to be well on her own terms. This is no small thing, as anyone taking control of their own health like this can tell you.

So where are things now? What worked? What didn’t work?

Gluten-free

Amy is now officially gluten-free. So, gfx community, rejoice! Everything we post from here on out will now be gluten free. While I occasionally eat bread while out, I am largely gfx at home (I’m still finishing off various glutinous products from times passed…but otherwise…beer is probably gluten’s last stronghold in our house). This has been surprisingly easy for the most part (says I, who can eat gluten). There are all kinds of great gfx breads, noodles, etc that make eating gfx at home pretty simple. Not all of these are vegan (I can’t do most breads, but there are some fantastic English muffins, and pretty much all gfx noodles seem to be vegan).

Amy had to give up sugars for 3 months to help eliminate problematic yeast–unrelated to her gluten intolerance (not allergy–she doesn’t have Celiac’s Disease, just a high immune response). She’s now (quite happily) back on the sugars, though we still eat almost no processed sugar.

Raw/Juice-y

This never seems to work out as we’d expect. We’re pretty healthy as it is, so we never feel that serious raw “cleanse” feeling. In fact, Crohn’s sufferers aren’t supposed to eat too much fruit and veggie fiber, so raw actually seemed to tax Amy’s system a little more. Most Crohn’s diets recommend cooked veggies.

We thought we could circumvent this wisdom by eliminating the fiber problem and juicing. No fiber, all the nutrients, right? But this didn’t seem to work wonders either. You do need to eat some solid food. With Crohn’s things are often moving too fast or too slow, if you catch my drift, and juice didn’t help any. Not when you’re already thin, and not when absorbing nutrients might be an issue.

We often wonder, actually, about liquid nutrition (we drink a smoothie for breakfast every morning). If it’s moving through your system so quickly, do you really have time to absorb all of the nutrients you need? The jury’s still out on this one.

Vegetarian/Vegan

Amy has adopted a vegetarian diet. Her iron and protein levels were dangerously low. The iron thing, especially, is not uncommon among vegetarian and vegan women. For a very long time, we regarded this problem as bunk, relegated complaints about low iron to laziness or ignorance. But for some people (especially women), iron can be a real problem. At least for a woman with Crohn’s. Amy is currently taking supplements to help with the iron, but in some important ways, it may not be sufficient. While this does not indict the vegan diet in any general way (I remain vegan, and all of my levels look great), it does indicate that everyone’s body is different. She and I share a diet. I’m in perfect health. “Eating more kale” is not going to solve her iron deficiency. We eat a lot of kale. We still haven’t resolved the ideal solution to this problem. We’d love to hear how anyone else deals with this problem.

Amy’s protein levels were also low. Believe me, we eat a lot of protein. Yes, meat-eaters eat way more protein than they actually need. But if you’re not absorbing nutrients, you’re in a tough situation. You actually need a surplus of protein. The vegan diet supplies just what you need, but probably not a lot more (in normal circumstances, this might be considered one of its virtues). So, she’s turned (largely) to eggs and greek yogurt to provide the extra protein she needs. She’s careful to source free range, happy eggs and milk/yogurt. This was not an easy or trivial decision.

Don’t worry, we’re keeping things 100% vegan on the blog.

Booze/Caffeine

Oh man, was this one was a bear! This is different for every Crohn’s sufferer, but typically, alcohol and caffeine are considered no-nos. For Amy, this seems pretty specific to red wine and coffee. Those are officially verboten. One mixed drink seems okay. Green tea seems okay. Decaf black tea seems okay. To the best of our current knowledge, red wine is her gut’s devil, and was the last to officially be jettisoned.

~

The last year has been committed largely to establishing a diet that could work for us, and thus something personal, something that has been a work in progress. Something perhaps not interesting or suitable for public consumption.

But here we are, one year later. Cooking like always.

2 comments ↓

#1 Leslie on 01.28.13 at 12:55 am

I think Amy should definitely read 80/10/10 by Dr. Graham and adopt a high-carb, low fat raw diet. Please at least give it a try. It’s sad how people try to restrict fruit and fiber intake will no avail. By instinct we know that they’re good for us. Choosing to consume any amounts of fatty animal foods and oils will only yield adverse results. I don’t know if she’s committed to go 100% raw for her health, but it certainly is better than trying heal with foods we know aren’t good for us and the animals. It just totally goes against your heart. I know a lot of people who have healed their digestive disorders this way. Personally, I feel so much better on 811. I had hormone disorders and doctors told me I Just need to eat more animal products (I wasn’t even vegetarian to start with)!
Please do yourself a favor and at least try reading more about Dan Klein:
http://www.colitis-crohns.com/
or you can get a consult with Dr. Graham at http://foodnsport.com/
or visit his message board at vegsource: http://www.vegsource.com/talk/raw/
The results speak for themselves. I don’t mean to discredit the medical community, but all conventional medicine does is maintain your health and suppress your symptoms. There is a way to healing your body and strongly I hope that Amy gives that a try, especially if ethics and animals mean a lot to her.

#2 mark on 02.04.13 at 2:33 pm

Hi Leslie–thanks for your input. We’ve actually read up on 80/10/10 as well as on Dan Klein. As I mentioned, the one thing that has become very clear to us is that everyone’s body is different and every case of Crohn’s is different. You mention “I don’t know if she’s committed to go 100% raw for her health, but it certainly is better than trying heal with foods we know aren’t good for us”–statements like these can be somewhat misleading, I think. We actually eat very healthily, and have avoided animal products for a long time (excluding the recent re-introduction of eggs and dairy to Amy’s diet). For many people, the switch to a vegan and/or raw diet is also a switch a healthy diet. As a result, folks attribute miraculous health benefits to a specific diet or school of thought, when the larger benefit may simply be eating healthier.

And as I mentioned, we tried raw and it seemed to make things worse. If Drs. Graham and Klein would seriously suggest that Amy should be prepared to weather several trips to the ER before the raw diet starts to work, I’d feel pretty skeptical of their credibility. I’m guessing they’d suggest that while their specific diets work for a great many patients, they don’t work for everyone. I only point this out because a lot diet dogma was actually pretty destructive to Amy’s health early on, and it was only breaking outside of it that she began to really regain control of her health. If folks in a similar situation happen to be reading this, we want to dispel the notion that there’s any sort of singular absolute best diet. Many Eastern diets–I’m thinking of something like Ayurveda here–have acknowledged this for centuries.

Of course, we’re largely in agreement with you about conventional medicine. That’s why, as I’ve mentioned, Amy’s committed to managing her Crohn’s nutritionally, not medicinally. The supplements she takes are natural–she works with a nutritionist who is sensitive to her dietary and ethical needs–and are meant to get her levels back up to a healthy level–something that the body often needs a bit of “jumpstart” for.

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