Almost Anniversary

I'm only days away from my one year anniversary of my celiac diagnosis. Yay? Call me crazy, but I'm not exactly going to bust out the streamers for the celebration.

I did, however, mark the occasion by getting my bloodwork done again and good news! My acute and chronic celiac numbers are now in the normal range! This means my condition "appears to be in excellent control" (per my doctor). At my six-month check up, my IgA (the acute measurement) was three, which is the highest number you can have and still be negative. Now, it is two! And my IgG (the chronic measurement) was a 12 (with anything over five being positive). Now it is a whopping four! Yay!

Of course, that begs the question of why I'm having frequent swelling and pain in two of my joints. So that'll be something I mention when I'm actually in the office for a check up later this week. I've been planning to schedule something with my regular doctor, too, so if we need to hunt down something non-celiac causing the problem, we can do that as well.

And more good blood test news, I'm finally firmly in the "normal" range for RBC so no more anemia! Yay!

And yay again for a normal IgG and IgA!

I'm Not Dead Yet

(Monty Python anybody?)

Dan and I are still not back to 100% but our cough drop and tissue consumption has finally started dropping. Still, we are closing in on two weeks of this nastiness so I officially dub it the most un-fun cold ever. So totally done with it. Ugh.

The only positive thing about this cold is that I was able to knit during most of it (almost misshapen heels is where the "most" comes in). Yes, I finished Dan's socks.

Technically, I suppose these are his birthday socks (a month and a half late) but I thought about making them for his birthday and they always say it's the thought that counts, right? Right.

The next socks are definitely going to be mine but they are not going to be the next project I do. Mostly because I started a new project yesterday. I think my focus and level of enthusiasm for it is a good indicator that I'm finally getting out of headcold-fog-land.

It doesn't look like much right now but that's because 1) it's only got three and a quarter sides instead of the final five and 2) it's floppy and unstructured since it's going to be felted. (Felted stuff is nice and firm when felted but so flat and floppy when being knit.)

Basically, it is an open-topped cube (made with leftover from Christmas slippers). I keep knocking things off the table beside my chair in the living room (my main knitting spot) so I need something to corral things. This is that something. (I've lost two DPNs by knocking them off the table into the trash below and not noticing. I'm so tired of having to get new DPN sets after accidentally throwing a needle away. It's almost frustrating enough to drive me to become a knitting super villain. I'm not sure what that would entail, but I lose one more needle and we might all find out.)

Of course, I have now run out of yarn for my open-topped cube. (Apparently that's my knitting theme this year. Sigh.) So I've got two hanks of yarn coming in two of the three "main" colors of this cube, then I'll be able to finish it up. And stop losing DPNs.

I better be over this cold by the time the yarn arrives. Because this is taking too long to get over. TOO LONG!

Studying Works!

I had my six month check up yesterday. I can hardly believe it has been six months since I was diagnosed with celiac. Sometimes it feels like just a month or two and sometimes it feels like a decade. But yes, six month check up! The main purpose of which was to re-run my blood work and see how things are going. The short answer: very good.

The slightly longer answer has three parts to it. Part one: I am no longer anemic! I'm hitting "normal" by the barest of margins but the fact that my RBC increased at all means that I'm starting to absorb better which means my intestines are healing. And what makes it even more awesome is that I'm not even taking iron supplements. (There was no real use in taking any supplements if I was too damaged to actually absorb them and now that I can absorb them, it looks like I won't be needing them. Yay!)

Part two and part three of the blood test news are my tt IgA and tt IgG numbers. Both are used to diagnose celiac disease so these are pretty important numbers to watch. As the doctor explained it to me, IgA is a more acute measurement that basically tells us how I am doing on my gluten-free-ness. Anything under a four is a negative and, in my initial blood tests, I was at >100. I'm now at three. Yay!

IgG is more of a chronic measurement of celiac disease. Anything greater than five is a positive and my initial blood test had me at 320. Current I'm at 12. And, okay, it's still positive, which you would think would be bad, but it's not. Because not only have I had a huge drop (showing things are improving), it means that celiac is the most likely cause of the problems I'm still experiencing. Basically, if my IgG was negative but I was still dealing with all this pain and swelling, etc, we'd have to start looking for other problems. But since it is positive, chances are good it is all still celiac-related. And if I had a 300+ point drop in six months (with at least one accidental glutening in that time), dropping another few points and getting rid of my remaining issues seems just around the corner!

And yeah, I am still having problems. Joint pain in my hands and feet (though it has shifted to more swelling and feeling sprained/sore and less arthritis gritty and stabby, so yay?) and some issues with some (non-gluten-containing) foods (apparently I can eat potatoes find but potato chips try to kill me - what's up with that?) and having that going on can totally sap my energy (and mood!) sometimes. But even with all the ups and downs, the general trajectory is up. Hopefully by the time I hit my one year check up, all this will be a distant memory. The doctor did make a point that I would never be normal again but I should be able to get to feeling normal. And really? That's all I want.

Books Six through Ten: Read, Reading, Read

It's no surprise that celiac has greatly influenced my recent reading materials. It is kind of surprising (to me, at least) where I have ended up on my latest health-related reading jag.

It started with Gluten Freedom by Alessio Fasano. First off, completely awesome book. Seriously, read it. Forget about reading Green's celiac book. If you are going to read one celiac book, this should be it. New bible. Yes. It's easier to read but has more in-depth information. Great book. I wish Dr. Fasano was my doctor (but not enough to go to Boston.) Two thumbs up.

Anyway, in the book, Fasano mentions patients that don't respond well to a gluten-free diet. (Oh look, just like me!) He mentioned a special diet he puts those patients on that helps most of them, so I ended up reading a study he did about that diet. That's what my current restricted diet is based on (though it has migrated a bit as I react or don't react to things.)

Then I started reading about connective tissue disorders and lyme disease (because there was some thought that I had other non-celiac issues going on and a resurgence of my lyme disease was mentioned (though the tests have been negative - yay!)). Well, a treatment/management tool for lyme disease (and a whole bunch of other things) is a low inflammation diet. A... what? I had no idea what that was (other than apparently eliminating gluten - oh look, done!) so I ended up reading The Inflammation Syndrome by Jack Challem.

That one had borderline too much information but it turns out the anti-inflammation diet is quite similar to Fasano's diet so okay, I'm interested. Maybe Fasano's diet works because it eliminates all traces of cross-contamination or maybe it works because it focuses on anti-inflammatory foods. Either way, it sounds good and hey, if it works, I'm all for it.

It turns out both diets (regardless of the reasons particular foods are included in the "a-ok" list) are pretty darn similar to the fad, the Paleo diet. Given how much I object to fad diets on general principal, you know I just I loved that. But I'm also desperate (and pretty much following that diet already) so, I ended up reading The Paleo Diet by Loren Cordain.

Seriously. Paleo diet. I feel a bit dirty but knowledge is power, right?

At this point in the reading chain, I wasn't expecting too much new information and I don't think I really encountered any. I mean, I've been running across Paleo things online for a while and felt I had a decent understanding of it and turns out I did so there was nothing earth shattering there. It wasn't quite in depth science-y, which I had been hoping for, but more fad-diet-y. So that wasn't awesome. Still, it had its interesting moments if the overall information wasn't shocking or shiny new to me.

One big complaint about the book though (aside from the whole fad diet thing): the author came across as massively arrogant. Everything was "I discovered this" and "my colleague So-and-so" like nothing of importance could possibly be attributed to anyone else - even other doctors and scientist in the field were only important because they were "my colleague". Yeah, that was off-putting even if the information being shared was interesting. And it was quite the contrast to Fasano's more humble style (and he's done a lot for celiac - he could crow a bit but doesn't. Sometimes it seemed that all Cordain did was crow. Ugh.)

Well, my mild dissatisfaction with that book led me to another Paleo book, The Primal Blueprint by Mark Sisson. It had footnotes! Much more what I was looking for. First off, the author didn't come across as arrogant. He did kind of push his website a bit, but not overly in a used-car-sales way.

The information was presented in a more logical and detailed fashion that the first Paleo (or Primal, whatever) diet book I had read so that was good. This one also walked the line more of "diet book" and "food book". Still not quite enough "food book" for me but I definitely preferred this book and would recommend it over the other. (Just in case anyone wants to read a fad diet book.)

And then rounding things out (but being more directly related to celiac), I also read Jennifer's Way by Jennifer Esposito, a gift from my delightful in-laws.

Reading her journey was pretty awful. I think I kind of cheated when it came to my celiac diagnosis. Hindsight, I was having gluten-related issues for about seven or eight months before being diagnosed, but so many people go seven to eight years. The only reason I wasn't diagnosed sooner is because I didn't go to the doctor sooner.

Of course, I was the one that asked them to include a celiac test. If I hadn't I could be on that same medical hide-and-seek others go through. But I knew I had the gene, I knew to ask. And it was positive. I totally lucked out (relatively speaking because, you know, autoimmune disease). I can only imagine what would have happened if I had not known to ask about that test as I was to the point in my reaction that I could barely walk. But my celiac horror story is remarkably short-lived. Unlike people like Jennifer Esposito. So yeah, really glad I missed the extended version!

As much as my road to diagnosis did not look like hers, I totally understood her post-diagnosis story. Food becomes the enemy? Fear at every meal? Yeah, totally get those. (I have no idea how long it will be before I decide to eat at a restaurant. I'm thinking never is a possibility.) And the detox and inflammation issues she death with? That is an experience I didn't get to skip! (And am still dealing with it.)

Honestly, at this point I think I'm kind of full up on celiac reading. I might next need to read something that doesn't make me contemplate my health. At least by this point I've pretty much figured out what my new diet is going to look like. No wheat or gluten (obviously), but no corn, no rice (I'm still having reactions to those two - corn (even in full vegetable form) now makes me feel like I've been drugged while rice makes me feet and hands hurt and swell. So far the reactions last about three to four days.), no dairy (sadly of any sort - even sheep and goat. Sadface.) There are still questions about things like potatoes - I think those are okay in small doses but do know that lots of potato chips are bad. Anyway, the food adventure will continue, even if the reading takes a slight more "for fun" bent for a little bit!

Celebrate!

Good news on the celiac front today. I had my follow up with my gastroenterologist. I gave Dr W the results from the blood work that the rheumatologist (Dr B - because "rheumatologist" is really long) had me do last month and he said that the changes were really good. All my numbers are either around normal or working their way there. My ANA marker (which indicates autoimmune disease) is even negative now! (That doesn't, of course, mean I no longer have celiac. It means that it's under control. Which is awesome.)

With the new test results Dr W has changed his mind; he no longer thinks I have a second autoimmune disease! Yay! He now thinks that I had a really bad case of celiac with lots of inflammation that was throwing everything totally out of whack. I still go see Dr B next week but Dr W said he really anticipates that Dr B doctor will say the same thing after seeing my tests. This is exactly what I was hoping he would say! Of course, I suppose I need to wait for Dr B to make it official next week but I'm still pretty darn pleased.

I have a follow up appointment in three months just to check on things and right before that appointment they are going to re-do my blood work again and give me a bone density test. (Dr W says he's interested in redoing my TTG test (the test they use to see if you have celiac) then, too. Anything over four is considered positive. When I was tested I was at >100. He's curious to see how quickly it will drop now that I'm gluten-free.) But until then, my directions are to just stay on my super strict diet and enjoy feeling better. Yay!

And in more happy-fun news on the celiac front, I have finished another pair of socks. I shall call them my wheat feet socks.

The yarn color is called golden wheat and the stitch pattern is repeating wheat stalks. Yes, both choices were intentional. They are my farewell to gluten socks. Call it a bit of catharsis.

They are ridiculous and I adore them.

All Signs Point to Yes

Got a call from my gastroenterologist's office: the biopsies taken during my endoscopy confirm celiac disease. Not really a surprise, but it's nice to basically wrap my diagnosis up in a big official celiac bow.

This means now that I get a checkmark beside all five of the things doctors look for when diagnosing celiac: symptoms compatible with the disease, positive blood tests, genetic markers, intestinal damage found via endoscopy, and symptom resolution on a gluten free diet. That last one was kind of sketchy for a bit but it seems that this super strict diet I'm on has finally calmed stuff down so I'm not reacting to everything. I'm not ready to switch to an all-rice diet, but so far it seems like I can sneak some in without horrible ramifications, so yay!

Book Four: A New Theme

I suppose one good thing about being diagnosed with celiac is that I have more books that are of interest to me now.

The first: Celiac Disease: A Hidden Epidemic by Peter H.R. Green, M.D. and Rory Jones Thrilling title, huh? But it was educational and not normally depressing (despite the earlier snippet from it I shared about my increased rates of, you know, a horrible death.)

I did discover while reading this that I cannot read celiac-realted things before bed. It gives me weird and stressful medical- and disease-related dreams. Not restful.

I've also learned that I'm probably going to be pretty dang low-risk when it comes to what foods I eat and the potential cross-contamination. Honestly, before I was diagnosed (but after I knew I had the gene), I figured I'd be a little more of a risk taker when it came to choosing food. I should have known better given how paranoid I always was when it came to safely feeding my mother.

But yeah, all the pain in my hands and feet I've been dealing with plus a three-day-long reaction-from-hell after eating some brown rice pasta that, best we can figure, was likely contaminated (before it got to me) and I'm definitely on the strictly-gluten-free-is-good bandwagon. (Because three days of feeling like my finger has a serrated knife sawing into the bone with every movement? Not fun. On the positive side, three days seems to be the limit of the pain - I ate that pasta twice and both times hurt like the dickens for three days then things started going back to normal. Which also explains why my hands stopped hurting during the week and a half of my cold - for about a week of that, I lived off of homemade (gluten-free) chicken soup. Felt better, added my normal wheat-based cereal in again and, bam, pain!)

And this post has nothing to do with the book other than I read it. So yeah. I read it. Have celiac? Read this book. It's much preferred over the group-hug-let's-sing-kumbaya-in-gluten-free-solidarity or jump-on-the-gluten-free-fad-diet books that seem to overwhelm an Amazon "celiac" search.

Next up, more celiac-themed reading: Gluten Freedom by Alessio Fasano and Susie Flaherty. I'm really looking forward to this one. My mom speaks highly of Dr. Fassano and he's a pretty big name in celiac so that's cool. But I'm mostly excited by the fact that this book was just published (Amazon shows the publication date as the 29th, but I got my pre-order today) compared to Dr. Green's book which was revised and updated back in 2010. Yay current information!

Oh Goodie

Patients with celiac disease have an increased mortality rate that exceeds that of the general population....The overall risk for malignancy for specific cancers in people with celiac disease has been reported at anywhere from nine to thirty-four times greater than that of the general population.

Celiac Disease: A Hidden Epidemic by Peter H.R. Green, M.D. & Rory Jones

On the plus side, those with celiac disease have a lower instance of breast cancer. Yay?

There Was Profanity

I've been having issues with arthritis in my hands and feet lately so a couple of weeks ago, I went to the doctor and had lots of blood tests. Today, I went back for the results.

Celiac disease.

Sigh.

Good News, Bad News

Some mixed news on the health front lately. First, the good news: I've finally found an herbal anti-inflamatory that works really well! I haven't found a corn-free OTC NSAID, so what should be my biggest help in the fight against bursitis has been something I've not been able to utilize. But last week, I got some boswellia serrata and curcumin (turmeric extract) and the change has been massive! Six days after I started taking them and suddenly I could move my shoulder with almost no pain! Today, day nine, I have no pain and only a slight bit of weakness and tightness. It's kind of amazing!

I'm still being really cautious because I've re-injured myself way too many times so I'm a bit nervous, but I'm really hopeful that I'm well on my way to normal shoulder use! Yay! This is especially good because the week before last, I had to break out the sling again. Boo! But the sling-needing made me search for more alternatives to NSAIDs, which resulted in the boswellia and turmeric, so I suppose the sling wasn't all bad.

Something that is kind of bad, though: Gidget is still having mouth-pawing issues. We went back to the doctor again on Thursday and got a prescription for amitriptyline. The dentist said something about using it to reset her pain pathways. It will take a couple of days to see the full effect, but already she seems willing to spend a bit longer at the food bowl than before and that's usually a good indicator of pain level so I'm hopeful.

We had to get the medicine compounded since it is a small dose but that small dose comes in big capsules. I've been putting them in the much-loved Pill Pockets and that's working so far. Gidget has to chew it some which breaks open the capsule in the treat so there is some drooling and icky kitty faces involved in taking the meds, but so far she hasn't wised up that Pill Pocket = bitterness and drooling and she keeps eagerly eating them. Perhaps she only remembers the math of Pill Pocket = yummy salmon.

Other bad health news: Dan's gout is flaring again. If it wasn't so obviously painful for him, I might find it funny that someone so young, normal-weighted and relatively healthy had "the disease of kings", but the poor guy can barely walk when it is this bad so instead I am just sad. Apparently it is genetic and runs in his family. His outbreaks don't seem to be diet related - we don't much of the typical gout-causing food at all - except potentially beer, and even that he doesn't drink to a level that could be considered indulgence, much less overindulgence.

He's doing all sorts of stuff that have helped in the past plus added in the boswellia serrata and curcumin (since they are supposed to be good for inflammation and arthritis, both headings which gout falls under) so fingers crossed he's better soon.

Ironically, it seems that I'm currently the healthiest one in the house right now. That's fairly shocking.