Introducing myself

[sarkin]

Hello to all - I have learned so very much here since joining just days ago . Thanks so much to all of you in this truly exceptional group. I'm afraid this is going to get long and rambling - I'm still sifting my way through all the threads of experience and reading. I'll owe you all some nice concise posts once I settle in here. I have found this extremely helpful to write (so don't feel obligated to read to the end if your eyes get blurry!), as I put together the various pieces in my mind.

I was diagnosed with collagenous colitis in 1997, after my first miscarriage. I was Rx'd doxycyline and codeine, which may have made my impending symptoms worse. (I'm sure it didn't help that I used ibuprofen when I found the codeine constipating - I used to call ibuprofen 'Vitamin I' and use it a lot.) I can't remember how long after that the relentless cramping and battery-acid D started. After weeks of no luck with Lomotil and Imodium, my internist sent me to a GI doc, who diagnosed me with C. difficile, which he felt was at a low enough level that it wasn't the real culprit, though he did put me on Flagyl for it (nasty stuff). I also had flexible sigmoidoscopy - that's how he found the MC. I had very good friends at the time suffering with UC and Crohn's and I remember thinking, 'microscopic/collagenous' doesn't sound quite so ominous.

I don't remember him telling me anything much about CC at the time. He did start me on Asacol, which I don't remember reacting to in and of itself - but it did cause me to sprint for the bathroom immediately after - during - a single spoonful of ice cream. That's how I figured out (and confirmed online) that there was lactose in the pills. I may or may not have been lactose intolerant before, but I sure was once my system was topped up to near over-flowing (I guess that means I am, at some level). I also found that beer no longer agreed with me, though I still had some once in a while - I tasted my husband's beer just a few weeks back, because he always offers me a sip when he's served something especially tasty. I guess that's a tradition we'll be revising!

For some months my D symptoms came and went seemingly randomly, and relentlessly. Once I had three perfectly normal months, followed by another round of weeks of symptoms. I wonder whether my gastro asked me whether I had food problems - I would have said no.

I did some obsessing on the Internet (remember the 'Net in '97?) - of course there was almost nothing. (I did find the SCD diet book - now I wish I hadn't lent that away to someone else.) I was focused on overcoming my miscarriages; I went on to have 4 more. We had an enormous amount of testing about that - including a genetic workup I'd love to have now, but I threw out the huge file folder of medical records I had accumulated about our fertility struggles, after I realized I had come to terms. (Good move, but I wish I'd saved that one piece of paper - actually 2, because my husband was given those same tests, and we had some overlap in genetic typing.)

I wonder whether they tested for AGA at the time, too? If they did, it was likely negative - I would have remembered anything that gave even a hint of explanation for recurrent losses.

And then, at some point, my symptoms tapered off. I seem to remember it was Jan. 1998 when I wondered what would happen if I stopped the Asacol, which I was never persuaded did much good. So I did, and (other than an occasional unremarkable loose-ish BM), everything was fine. Till 2009!

Lucky, lucky me – that is a long time. (And as an aside – I'm looking back and wondering whether I had previous episodes... traveling in SE Europe in '86 I had some rough days, and assumed it was the usual traveler's bug... hoping it had nothing to do with Chernobyl!)

Then in 7/2009, after my nephew's birthday meal in a restaurant, I woke up in agony. I barely remember it – lots of D, no relief, so sick I couldn't even hang out with my brother & family who were visiting from abroad. I finally dragged myself to the doctor, and she sent me home with a cup for a stool sample and a reminder not to get dehydrated. The next day - before I had a chance to collect the sample - it was completely over. No cramping, perfectly normal BM, my one-week crisis evaporated. I didn't even do the stool sample, which I always doubted was going to tell me much. Again, lucky me; this time till 3/5/2011.

Though I had no idea there was any MC/gluten connection, I had long been wondering, casually (and hoping I wasn't nuts, maybe hoping I was wrong) whether cutting out all gluten would be better for me. Plus, I was prepping to wow my doc with my upcoming physical and cholesterol test, because I am not keen to go on statins (my father died of an adverse reaction - I'm sure his doctors would gasp at my causal certainty). So, hoping I could avoid the loss of independence and vigor my mother experienced in her last years, and my dad's drugs/bypass/stents, my husband and I tried a full-on vegan experiment, gluten-free. And then, after several weeks, we had one of those whirlwind days, and neither of us had given dinner a thought until we were ravenous. So Friday night 3/4, we abandoned our regime and ordered take-out dinner from one of our favorite local spots, and I had my usual - mushroom quesadilla. Oh yes, that was a flour tortilla. You are thinking: and also cheese - yes, really stupid, but I wasn't trying to do a proper experiment - it was just an expedient and familiar solution to dinner. And of course I had been eating a lot of legumes and non-gluten grains - plus quinoa/buckwheat - leading up to that, so my gut could have been uneasy already – perhaps from something else? or maybe it was just time.

For about the first five minutes of Saturday, I was almost smug, like, "I'm so smart! I knew I shouldn't be eating gluten!" And then reality hit, with full-on cramping, battery-acid D, of varying severity but no good days, for a little over a week. This is day 11, and I'm definitely improving on coconut water, homemade chicken broth, chicken, and white rice. For many meals in a row, the broth/chicken/rice has been very good to me! No normans yet - but no BM at all today yet, and a non-agonizing one yesterday. I've been taking Pepto-Bismol since Friday night, but don't plan to do it for 8 full weeks. I've cut back from 8/day to 5 – the first few days I felt exactly when I needed to take the next one, but no longer do – meaning, not for symptom relief. I do understand there's a healing benefit to the full 8-weeks. I'll add it back (once I finish 'tapering' off) if I see symptoms during my slow experiment of adding foods back in.

Yesterday I added eggs at breakfast (cooked of course in broth, with rice!) and a very little bit of overcooked carrot in my chicken-soup-with-rice at dinner. I worried about 2 foods in one day, but so far, so good. A little gurgling at bedtime, but no upset, discomfort, etc.

(Does anyone remember that Maurice Sendak poem about 'Chicken Soup with Rice'? It's running through my head these days – fortunately it still makes me smile!)

Other things I've been having a little are green tea, tulsi tea, coffee (not on the first/worst days, but since), and wine. This morning I had fine-ground brown rice hot cereal, with chicken broth. (Have I mentioned that my husband makes a terrific chicken broth?) I upgraded my chicken soup at lunch with banana and it was so delicious I'm going to post the recipe (also a very little curry powder – maybe I'm starting to add things too fast). My food-adoring husband was so envious of my food, I had to stop him over-tasting it while putting away the leftovers for dinner!

I can't believe I've known my Dx all along without knowing what it meant. I recently healed an awful skin condition of one of our cats via diet – it was obviously not fleas, which the vet swore was the most likely verdict. His awful patchy scabs cleared up, over some weeks, when we removed the offending food. Wanna bet it would come back if we reintroduce it? (Why would we do that??) How I wish I had trusted my nagging suspicion about gluten long ago.

I may have accumulated some yet-undiscovered damage in the past decade-plus (not to mention the decades before!), and my food restrictions list may turn out to be longer than it would have been if I'd known to cut gluten (at least) in '97. Some of that damage may still progress while I get my diet in order, or longer. And not all of it may reverse. But, dark as that sounds...

I'm pretty optimistic (feeling a little better is a glorious thing!). I'm OK with pretty strict diet limitations, and find them a nudge to culinary creativity. I know that my previous restrictions were totally self-chosen, and feeling like 'this is fun' can wear off - especially if the list of restrictions gets very long. Clearly, my 'GF vegan' days are over, since I'm going to be avoiding most grains and beans for a while... and cautious about reintroducing nuts. That doesn't leave a lot of food groups! I'm considering Paleo, but mainly I plan to embark on Enterolab testing and coddle myself through these next few weeks with friendly foods, and worry about what name to call my new diet some other time.

One great result of the GF vegan experiment – other than the clarity to avoid gluten, and finding this incredible group – is that we were already home-making even more of our diet than we had been before. I had just made homemade energy bars – the 2nd batch was pretty good (let's not talk about batch #1) - my husband enjoyed polishing them off. I look forward to dreaming up batch #3, but not imminently. I sure have a pantry full of newish things I may never use again – but there may yet be some keepers in there.

I will save my musings about family history for a future topic, as well as past, seemingly unrelated health experiences that, through this new lens, now seem possibly connected (perhaps with a poll). (Should I still respond to polls, even though they were done before I joined?)

I'm looking forward to a gluten-free life (unless Enterolab says gluten is the one thing I don't react to - but what are the chances!?), and to identifying other possible problem foods, and I wish you all vibrant health and extend you my awed gratitude.

--Sara

[JLH]

Sara, so happy you found us.

Eat it once, eat it twice, eating chicken soup with rice. Great motto for our family.

to the other newbies that I may have missed.

[Gloria]

WELCOME, SARA!

I've enjoyed reading your posts - you have a great writing style and your personality comes shining through. You have had an interesting history with MC. I hope you can resolve it using techniques you find here.

We are here to answer your questions, so ask away.

Gloria

[sarkin]

Thanks, Joan! Glad you're liking the 'chicken soup with rice' motto.

And Gloria - thank you for your sweet words. I really got a lot out of the rotating menus you shared. We have always done well with a group of rotating meals: we had summer breakfasts (more smoothies with frozen fruit) and cold-weather ones (more hot cereals), and some year-round options. Of course many ingredients of those meals are now on the no-way or we-shall-see list, but the principle will work. And probably we have some old-favorite menus that are GF/DF/?F, though we chose them for some other reason. I'll re-find them in time, and re-invent them if need be.

I keep saying "we" because my husband and I are such food buddies - for years before we started dating, we ate together. We went to farmer markets. Since we've been together - well, a lot of meals under the bridge. He has followed me cheerfully into some amazing food experiments, and I'm sure he'll help me lead myself to whatever my True Food turns out to be. His name is Robert, and I want to 'introduce' him because he's been making most of the good things in life possible for me for years, and has been such a companion and help as I come to terms with my new understanding of MC.

Health to all,
Sara

[tex]

Hi Sara,

Welcome to our internet family - Great post, with a lot of good information.

My symptoms started somewhere in the mid to late 90's, also, but they came and went, initially, and I tried to ignore them, until one day in the spring of 2000, when the D started and refused to stop. That's when I finally caved in after a couple of weeks of passing dirty water many times each day, and I went to see my doctor, who promptly diagnosed me with colon cancer. The GI doc he sent me to, also confirmed his diagnosis. Fortunately they were both wrong.

(Should I still respond to polls, even though they were done before I joined?)

Sure, there's nothing wrong with voting in those polls, to add to the data.

You're very fortunate to have a spouse who is so understanding and helpful with your dietary needs - not everyone with this disease is so lucky. I'm guessing that Robert's personality is in the "outstanding" category, similar to yours.

Thanks for sharing your history with this disease, and your insight. That's very valuable, since we learn from each others' experiences here. Apparently, you're one of the few here who experience somewhat long periods of spontaneous remission. As you mentioned, most of us are not that fortunate. It's good to see that you're making such good progress with your current treatment plan, and I wish you the best possible success with your program.

Again, welcome aboard, and please don't hesitate to ask anything that comes to mind.

Tex (Wayne)

[MBombardier]

Welcome Sara! Wow, all you cooks really awe me. My mother was a gourmet cook, but that gene definitely skipped me. Too bad her gluten-sensitivity gene didn't, lol. As I have said before, I can make decent meal, but why do people have to have one three times a day?? But apparently, that is something I am going to have to learn to do, and the best thing is to learn to love it, hmm?

Sara, I have had five miscarriages, too, the first in 1991 and the last in 1997. So I have a great deal of fellow feeling with you in that area.

Welcome again!

[MaggieRedwings]

Welcome Sara!

Thoroughly enjoyed your post and especially your writing style but sorry for why you had to write it. My husband and I are also food buddies and was so surprised to hear someone else use that expression. He is pretty much gluten free with me as he is so supportive of my diet and why I have to be GF. However, he does succumb to the occassional potato rolls that are quite prevalent in our PA Dutch locale.

Please keep posting and be sure to add your recipes to Dee's kitchen if the are GF/SF/DF. Look forward to trying some of them since I love to cook and bake and glad so since it made adaption to my diet easier.

Love, Maggie

[sarkin]

Wow, Tex - nothing like a wrong (and horrifying) diagnosis, delivered with conviction and confirmed by a second MD! I'm so very glad they were wrong. I worry that my suspicions of doctors' powers is going to get me into trouble one day, and I'll ignore urgent and important advice from the profession. I have my own GP pretty well trained by now - when she poises her pen over an Rx pad while I'm answering a question, I just stop talking, and wait politely till she stops trying to slap a drug on top of what I thought was supposed to be a conversation. Heh. And you're right, my husband is an incredible support. We are a great team, but he's been doing an awful lot more of the support role, also through my parents' final years. And I do appreciate that I've had a pretty lucky version of the MC story, so far. That may or not mean a thing about the next chapter, but I do feel grateful for my luck. Luck sure isn't evenly distributed in this world.

Marliss, I'm sorry we've shared two such heart-wrenching experiences, MC and recurrent loss. But very glad to have found your fellowship anyway. My grandmother felt just the same way you do about 3 meals a day. And when she was quite elderly and living alone, I know preparing, eating and cleaning up took a great deal of her energy, though she had it down to just a few standard meals. I've always had a knack for pulling a meal out of a "nothing to eat" bunch of ingredients - I guess I'll be working with a new 'palette' now. In life I struggle with organization, but I do have kind of a good workflow and choreography around the kitchen. Funny how hard it is to transfer one set of skills to another arena, and so many multi-gifted people just don't enjoy or excel in areas that others find easy-breezy. In college, I typed my roommate's papers while she cleaned my room. We both thought we were getting the easy deal.

Maggie, I think standing between my husband and a potato roll would be a dangerous proposition - I can almost hear him now, sounding like Homer Simpson, "Mmmm, potato rolls..." I'm a beginner birder, have been sort of a beginner for years. You'd be surprised at some of what we see (and hear) in Brooklyn, especially at spring/fall migrations. There was a scarlet tanager smack in the middle of our backyard the first year we lived here. Not a rare bird, but not a common sight, either - what a thrill!

Minor obstacle: I need my doctor - any doctor - to authorize or order the Enterolab tests, because the state of NY does not allow residents to purchase medical tests directly from a lab! I guess I knew I would need to wade back into the medical pond at some point. And I guess if my doctor declines my request I'll know I haven't trained her so well after all - and I'll need a new one.

Best to all,

Sara

[Kari]

Hello again Sara - quite a story you've told - glad you've had on and off again symptoms, rather than constant ones - at least you've enjoyed some reprieves. You sound like such a proactive, level headed person - even though you say you're lucky to have your DH, he is probably at least equally lucky to have you!!!

Your enthusiasm about cooking, as well as the fact that you live in Brooklyn, reminds me of the book (and movie) Julia and Julia . I'm sure you must have read/seen it??? You'll forever be the Brooklyn Julia in my mind :). I also love the way you write and the way you express yourself - so refreshing.

I lived in NYC (Manhattan and Queens) for 34 years before relocating to Colorado. The last 4 years I was there, I lived in the new Avalon tower across the river from the UN, and used to walk across the Kosciuszko bridge to Greenpoint and then to Williamsburg quite frequently. Great Polish meat markets in Greenpoint, and fun stores in Willamsburg !!!

Welcome again to the PP family and best of luck with your MC management.

Love,
Kari

[Pat]

Welcome Sara,

You do have an entertaining style of writing. Sorry you had to find us but this is the place if you have to have this dreadful disease. I hope you are one of the crowd that finds remission quickly.

Pat

[tex]

Wow, Tex - nothing like a wrong (and horrifying) diagnosis, delivered with conviction and confirmed by a second MD!

Actually, rather than to feel horrified, or depressed, I felt relieved, because they simply confirmed what I had already suspected, so I was already sort of resigned to my fate. LOL. A few months later, after going through all the clinic tests, (which began with a series of CT scans, and a sigmoidscopy, and finally ended with a colonoscopy, I was pleasantly surprised when the GI specialist announced that there was absolutely nothing wrong with me. Of course, he never figured out what my problem actually was, but he was satisfied with himself, for ruling out cancer, at least.

I have a neighbor whose philosophy in life is to always expect the worst - that way you're never disappointed. And, of course, most of the time, the worst doesn't happen, so you almost always end up pleasantly surprised at the outcome. I guess that attitude has rubbed off on me, over the years, to some extent. I'm not saying that I actually always expect the worst - (I don't, in fact I actually always expect the best possible outcome), but I always remind myself that anything is possible, and bad things do happen to good people, so that no matter how things turn out, I'm never disappointed. This allows me to always remain optimistic, so that I can concentrate on overcoming whatever issue I'm dealing with at the moment.

Yep, NY doctors have a good lobby in their state government, so they have a monopoly on lab testing. I believe that one or two other states have enacted such laws, also. Laws such as that are claimed, (by the medical community), to "protect" the people of the state from being ripped off by unsavory out-of-state labs, and those laws are also claimed to prevent "innocent and/or naive do-it-yourselfers" from misinterpreting the results of lab tests, doncha know, (as if it's rocket science, and MDs are the only people in the world capable of correctly interpreting the results).

Anyway, some members get around that "monopoly" law by having the kits shipped to a friend across the state line, (if their doctor refuses to cooperate).

Tex

[Joefnh]

Hi Sara and welcome to the group. I love your post, what a great style of writing. You certainly have been through a bunch to get here, but now you understand the issue with gluten and can work on controlling the CC. It is amazing that so many of us go through years of either no diagnosis, or years of a diagnosis without the information to properly treat this disease.

I look forward to reading more of your posts.

--Joe

[sarkin]

Tex,

I should have known you'd have a third erroneous doctor up your sleeve! I think that's hilarious, or maybe I am more dehydrated than I thought.

I did smell the fragrance of "government protection" when I read that rule. In fact, I was outraged enough that I was composing a little outraged email to my bestest friend in another state, and then I thought... hmmmm... didn't she just ask if there were anything shd could do? I will find another zip code among my pals ;) Thanks for the nudge around the removable obstacle. I think/hope the tide will shift as more and more patients, with many questions and health concerns, start to take matters into their own hands.

I have a pretty big do-it-yourself chip on my shoulder about this, but am not averse to finding a friendly person in the medical profession. (Perhaps when I get it figured out, I will let them know my hourly rate for our sessions.) I do appreciate help with the data collection (those bone density scans don't take care of themselves... and if I need new equipment to manage this condition, I'm thinking I'd rather have a chest freezer than a bone-density-gizmo).

Pat, thanks for your kindness - I'm wishing you the best health, too. I have been lucky so far, and am hopeful going forward. I'm taking nothing for granted, and take finding this forum as one of the best lucky signs of all.

Kari - Greenpoint/Wmsburg is our old neighborhood! And we have great friends in LIC. If you're ever heading to NYC, I promise to have some major resources at the ready for safe eating.

t's funny you mention the Julia/Julia story, because I've been seeing it in the last couple of years in totally different contexts. Began knitting again, and approached a classic old-style knitting how-to text with exactly that spirit, while kind of laughing at myself. I found that take it (sort of) page by page inspired me to strike out in my own direction, more than I could have otherwise. In cooking as in so much of life, you can't learn just by reading the masterworks - you have to get tangled up in it.

I have been thinking about the fun of cooking as we prepare dinner (especially thinking of Marliss, and how I could FedEx her some of the fun). So many people are robbed of this, while fighting to find their way through food intolerances, especially when the list of off-limits ingredients is long or incompletely known. That makes it all the more inspiring to me that so many here are still creating new favorites, and reinventing old ones.

I am eating much more meat than I have in years - so look for my turducken meatloaf invention, coming soon to a forum near you ;)

And Joe - I know we've just met, but I'm very happy to hear that you're making a move towards a true dream. I have been feeling for some time that I need to move toward the next thing, and I wish you all the best as you move toward Oz.

Health and healing to all,

Sara

[Coach Polly]

Welcome to the group! I'm fairly new so I'll just comment and not give any advice right now!! It's interesting to me that you and a few others have mentioned multiple miscarriages. I had four and wonder if it's just the whole autoimmune trip or what?

[ant]

Dear Sara

A very late, Welcome!

Like many have said you communicate beautifully and I have really enjoyed reading your posts. It strikes me you are also very level headed and ready to take on the MC monkey......tricky as it is (and might be in future).....including navigating through the medical industry jungle.

I too come from a family of "foodies". You have reminded me that is possible to "welcome" the challenge of finding ways to enjoy and help others enjoy food, despite a huge list of intolerances. That has, thankfully, been my experience. Although it is always difficult, especially when we venture "out".

All the best on your journey to lasting remission, ant