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How Did I Get Here? Now What?


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#1 KainsAveZoo

 
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Posted 17 April 2011 - 09:03 PM

Hi Everyone,
Been lurking for a while reading up and figured it was time to make an introduction.

A quick bit about me: 43, male, Finnish heritage. If you didn't know me I don't think you'd suspect health problems. Good diet, physically active, my annual physicals usually go fine. So how did I get here? Let's start with how I started waking up about six weeks ago with stiff, swollen fingers. At first when this started happening, I kind of brushed it off thinking I must be getting older and it's been cold and wet and oh well. But after a while I started to wonder what was going on and started to suspect rheumatoid arthritis perhaps (both hands, some family history) and so maybe I should have my doctor take a look. I tend to avoid going to the doctor. I'm not sure why. I suppose it's partly out of denial and partly out of frustration with the overall experience I've had with doctors in my life. I know they mean well, but it seems like if you don't show up with a gunshot wound or something really obviously wrong, they just don't seem to really have the time to stop and think about what might be going on. But I digress...

Anyway, the doctor looked at my fingers and asked if I had a rash too, and sure enough if you looked closely enough there was a bit on both of my ring fingers. He said some kind of autoimmune reaction, might clear up, might warrant further investigation. Let's see what happens and if it's still bothering you in a couple of weeks come back in. I also mention that my hands often seem abnormally cold as well, which he says is Raynaud's Phenomena, gives a brief description and tells me to read more about it on the internet, and that it may be somehow related to the finger swelling and stiffness. He's definitely downplaying the RA possibility, which sort of eases my mind, but I'm not really sure what to make of it all yet. My doctor is definitely not the reactionary type that is ready to order up a bunch of tests right off. For the most part I like that about him. Anyway, after this visit I decide to start reading about the Raynaud's, and how it can be a primary thing on its own or a secondary manifestation of something else. I'm leaning more towards the latter which will make more sense as my story unfolds. So then I start digging into autoimmune diseases, wondering about the possibility of RA or what else might be going on with the fingers. I came across some site that had a long list of autoimmune conditions, explaining how they often ran together, and then I came to Celiac Disease and light bulb went off.

Going back now two years almost exactly, I went to the doctor with some chest pain. It really kind of freaked me out because for one, it definitely felt like it was coming from inside my chest right where my heart is and two, it didn't really fit the classic symptom of angina, not to mention that angina made absolutely no sense at all. Nobody in my family has died young from a heart attack. So I was about to get a costochondritis diagnosis and refer me to a cardiologist just to be on the same side when she decided to go ahead and do an EKG, I suppose just to be safe. It comes back with Wolf Parkinson White, which is a type of congenital arrhythmia. I get more heart tests done, the Holter, the stress echo and it all looks fine. So now the question is, do I bother to get the WPW ablated? I decided to do it because even though everything I've learned about it given my age and history suggests that WPW is not going to be a problem for me, I know there's something going on and hope the ablation will clear it up. So that brings us to November of 2009. During the ablation my EP discovers not only WPW, but also Left Bundle Branch Block, another type of arrhythmia where the electrical current in the heart doesn't flow through properly causing my left ventricle to be just a bit slower than the right. OK. My EP isn't too concerned. He just wants to monitor it. I still don't feel right, and so I get a second and third opinion, and neither of those doctors seem to be concerned either. OK, fine. In the meantime, I am reading a cardiologist who recommends avoiding wheat as part of a heart-healthy diet, and so I try that. And this is where in the story I kind of feel stupid, or at least ignorant. First, at that point I was already suspecting I was "gluten sensitive" so deciding to avoid wheat seemed like a good idea anyway. I didn't go totally gluten-free, but I did cut back. My stomach thanked me. My sinuses thanked me. Yet I didn't stop to consider that I might actually have Celiac. I think my impression of Celiac was that those that had it were so sensitive to gluten that they just couldn't even eat it without horrible immediate consequences. I guess that's the "Classic Case." That wasn't me. As long as I can remember, my digestion has been an issue, but for the longest time I had no idea what was triggering it, nor was it so persistent that I thought it was a serious problem. I just really couldn't put my finger on it and then only when I started noticing a pattern with pasta and instant oatmeal maybe five years ago did I start to suspect gluten. But again, I just didn't take the possibility of me having Celiac seriously.

Now I've been on a two week Celiac crash course, and after reading a lot of the posts here as well as some other stuff on the web and a book I bought, I'm pretty sure I'm part of the club. Nobody in my family has been diagnosed, but I could list of all of the ailments and complaints and I'm sure they would sound familiar. As for myself, I've already touched on the digestion and the sinus issues clearing up with reducing my gluten intake. I also started to get sick a lot less. Unfortunately I didn't stop right there, and since my heart diagnosis I've had the finger and Raynaud's things going on, but I also have had a lot of peripheral neuropathy symptoms that I've kind of been blowing off. I either didn't really think they were significant (e.g. the involuntary muscle twitching) or wrote them off to anxiety (cold hands, or random tingling in an arm or leg) or just didn't quite reach a threshold of mental disturbance that warranted a visit to the doctor. But after learning more, the pieces are coming together and making a LOT of sense.

For all of you who have shared your experiences here, I owe you a big thanks. I've spent the last two years feeling not myself and to be quite frank, fearful that something serious is wrong with me that could kill me any day. Unfortunately that isn't going to change overnight because now I'm pretty sure that my fears were right! I think I do have something seriously wrong with me. Did I mention that I've got the most precious four year old daughter in the world? The last two years have been difficult to be honest because I haven't really been myself. I've been full of confusion, anxiety and depression and little nagging thoughts in the back of my mind and it's really difficult to just go and live and enjoy my life. My wife has commented that something has changed with me and that I don't seem happy anymore. I totally understand her position, but I haven't been able to snap out of it. The world doesn't really stop to wait up for someone trying to figure their health issues out. I suppose I've been putting my head down, going about the motions of living, and hoping psychologically I'll somehow adjust to this new lack of confidence in my health. I mean that's true regardless anyway, right? There's always that hypothetical bus out there that could run you over. I think we all know that kind of rationalization doesn't work. When you don't feel right deep down, but have so much to live for, it just doesn't work. At least it hasn't for me.

So you can probably tell I'm in kind of a raw emotional state here over this. It hasn't been the best week to be honest as my wife's mother was diagnosed with cancer on Wednesday, which only complicates things as I try to get my own health issues sorted out with my wife trying her best to manage it all. But now I think I know the source of my pain, which is a good feeling, and I've ready so many of the stories here about how the GFD changed their lives dramatically and it certainly makes me hopeful. I've actually been gluten-free, aside from a couple of accidental ingestions (still getting the hang of it) for two weeks today. After I found this site I poured over it, and read enough to convince me that I needed to stop eating it immediately. And you know what? The Raynaud's pretty much cleared up in three days. The finger stiffness has improved, but hasn't gone away entirely, but I think that's pretty cool. I know I'm not out of the woods here and am worried about how much damage I've done, though. For all I know I've had this since I was a kid. And FWIW, I wouldn't be surprised at all if my chest pain and LBBB was a result of Celiac, though I doubt that could be proven. It's just a hunch based on all I've learned in the ways that Celiac can mess you up.

So now what? I'm going to go back to see my doctor this week if possible and explain all that I know and suspect now. I'm really not sure how he's going to react to be honest. I know I've done this completely "wrong" according to the book of Celiac diagnosis, but I really don't care so much about getting the formal diagnosis at this point. Mostly I want to try to assess the damage and try to address that. Any advice on how I should prepare for the doctor visit would be so very much appreciated.
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#2 sb2178

 
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Posted 18 April 2011 - 05:11 PM

Be sure to get tested for nutrient status. Iron, folate, vitamin b-12, magnesium, and vitamin D are sort of the baselines. Vitamin A, vitamin E, vitamin K, and zinc can also be added to that list. Following the results, liberal treatment of any low-normal or straight deficiencies generally helps people feel better. (Some of that may be the placebo effect.)

I've found magnesium to be most helpful (every time I drop it, I start to have insomnia and muscle cramps again) but others needed B12 or vitamin D. Iron (enough to raise my ferritin level to normal) was incredibly helpful in combating fatigue.

If you aren't already taking it (or eating lots of fish), omega-3s are helpful. Fatty fish, fish oil, cod liver oil, flaxseed, and walnuts are options.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?




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