Making Sense Of The Nonsensical

[rawvegan]

I went to see my gastroenterologist yesterday for our "final" appointment. It's been two years since he diagnosed me with celiac disease, throughout which time I've been extremely vigilant with my diet. Nevertheless it seems my antibodies (or IgA) have adhered to a steady and slow decline. They were initially around 100 (normal level I'm told is 4), my last appointment at 13, and now they're back up to 16. I know everyone heals at different rates, but I wish I knew when and if I can expect them to reach the 4ish mark. Or at least, how I am suppose to feel functioning with a 13-16 mark. I often expect myself to be able to do it all, and yet I often feel utterly exhausted.

Moreover, I'm about to start graduate school (hence the last appointment I alluded to above), and I'm no longer going to be working with/seeing my previous gastroenterologist. I think this is good news, as there were a number of questionable moments in our relationship, such as inconsistent tellings, and uncomfortable directions, which make me excited to work with someone new. Nevertheless, he chose our last appointment to tell me that "oh, your white blood cell count is also low, but it's probably nothing to worry about because it has been consistently low". Slightly frustrating on my part, in that I'm already trying to wrap my mind around pancreatic cysts, elevated liver enzymes, and the usual celiac monitoring antibodies fun.

It feels like every time I have a doctors appointment, it's another reminder of how unhealthy or abnormal I am. Then I get mad at myself for feeling sad, when the reality is, it could be so much worse, and I should enjoy life as it is. But how can I fully enjoy life when I feel like death is taunting me?

If I had the choice of dealing with a chronic illness or dying at an instantaneous acute time, I think I would choose the latter, because right now-I find the former overwhelmingly distracting, and plainly put, sad. Thoughts?

[mushroom]

I went to see my gastroenterologist yesterday for our "final" appointment. It's been two years since he diagnosed me with celiac disease, throughout which time I've been extremely vigilant with my diet. Nevertheless it seems my antibodies (or IgA) have adhered to a steady and slow decline. They were initially around 100 (normal level I'm told is 4), my last appointment at 13, and now they're back up to 16. I know everyone heals at different rates, but I wish I knew when and if I can expect them to reach the 4ish mark. Or at least, how I am suppose to feel functioning with a 13-16 mark. I often expect myself to be able to do it all, and yet I often feel utterly exhausted.

Moreover, I'm about to start graduate school (hence the last appointment I alluded to above), and I'm no longer going to be working with/seeing my previous gastroenterologist. I think this is good news, as there were a number of questionable moments in our relationship, such as inconsistent tellings, and uncomfortable directions, which make me excited to work with someone new. Nevertheless, he chose our last appointment to tell me that "oh, your white blood cell count is also low, but it's probably nothing to worry about because it has been consistently low". Slightly frustrating on my part, in that I'm already trying to wrap my mind around pancreatic cysts, elevated liver enzymes, and the usual celiac monitoring antibodies fun.

It feels like every time I have a doctors appointment, it's another reminder of how unhealthy or abnormal I am. Then I get mad at myself for feeling sad, when the reality is, it could be so much worse, and I should enjoy life as it is. But how can I fully enjoy life when I feel like death is taunting me?

If I had the choice of dealing with a chronic illness or dying at an instantaneous acute time, I think I would choose the latter, because right now-I find the former overwhelmingly distracting, and plainly put, sad. Thoughts?

Hi rawvegan, and welcome to the forum:

I do understand your frustration, that your IgA went up instead of down; however, I do think your doc should have been sharing with you the other results that have been out of range. One of our rules (unspoken) here on the forum is to get a copy of your lab results (all of them) from your doctors so you can judge for yourself what is out of range, do research, and consider what needs following up. I am not saying that your doc has done a bad job (although you have some doubts); I just think that you should know what your results are and that it might not be a bad idea to get another opinion on what is happening. So many doctors are willing to accept things that are slightly out of range, when we are all aware that there is a lot of slop in those ranges and anything outside probably needs investigating. I would urge you to find another gastroenterologist who is familiar with celiac/gluten intolerance and follow up on these abnormalities. I went for years with a blood Mean Cell Volume reading that was "slightly out of range" without realizing its significance, something that my doctors accepted without blinking an eye.

[YoloGx]

Hi Rawvegan,

Health can be such a complicated, frustrating thing. I suggest you look forward however and don't give up. No doubt you will unravel the puzzle with applied persistance.

Have your doctors checked your vitamin levels? You could be low on B12 most especially if you are a vegan. You might also be low on vitamin D, commonly gotten from fish oil if not absorbed readily enough from sunlight due to damaged systems from the celiac etc.

Also note, you can make 24 hour yogurt. It isn't raw, since its usually suggested to heat the milk before cooling a little and innoculating it, however the yogurt culture is raw. Alternately 3 day fermented chopped cabbage inoculated with either pro-biotics or some live yogurt could possibly help your gut get back into control. By letting the yogurt ferment 24 hours plus; all the lactose is thus fermented out.

I would normally suggest the specific carbohydrate diet (scd), however it might be difficult for a vegan to wrap his or her head around. Nevertheless, it may be your body may actually crave a different diet than what your head tells you. I had to change back to meat years ago just because eating vegan did not work for me. I tried twice for two years at a time, and each time after a while became more sick than I had been despite all the wonderful health claims the vegan diet has.

Vegan works well for some, but not for others. People with celiac and related disorders often have to eat in a more cave man like fashion. Who can fault nature?

There is a thread here on the specific carbohydrate diet if you are interested... The whole deal with simple carbohydrates vs complex ones could be very much of interest to you for resolving many of your complaints. Maybe you could do some kind of combination thing of partially raw foods and scd...the best of both worlds. Check out Elaine Gottschall's book: Breaking the Vicious Cycle online and/or in print if you get a moment.

Meanwhile, whatever direction you take, take note that many of us have had to simplify our diets and go off all grains and often times nuts and a variety of other things due to leaky gut condition that unregulated celiac tends to create. That includes juicing raw grains too, I hope you realize...and avoiding candida inducing foods (in case you have candida overgrowth).

Good luck!

Bea

[rawvegan]

Hi rawvegan, and welcome to the forum:

I do understand your frustration, that your IgA went up instead of down; however, I do think your doc should have been sharing with you the other results that have been out of range. One of our rules (unspoken) here on the forum is to get a copy of your lab results (all of them) from your doctors so you can judge for yourself what is out of range, do research, and consider what needs following up. I am not saying that your doc has done a bad job (although you have some doubts); I just think that you should know what your results are and that it might not be a bad idea to get another opinion on what is happening. So many doctors are willing to accept things that are slightly out of range, when we are all aware that there is a lot of slop in those ranges and anything outside probably needs investigating. I would urge you to find another gastroenterologist who is familiar with celiac/gluten intolerance and follow up on these abnormalities. I went for years with a blood Mean Cell Volume reading that was "slightly out of range" without realizing its significance, something that my doctors accepted without blinking an eye.

Hi there shroom...

Thank you for your quick reply. This forum is quite the wonder. Thanks for sharing your wisdom as well. I wanted to get a second opinion last year (after feeling as though he was snuffing off certain abnormalities as nothing). During our last appointment, when he told me to pretend certain symptoms weren't there and not to worry about them, I was quick to express how I thought "that's an awful thing to say to a patient". Nevertheless, our history is long, he was my Doctor when I randomly caught Hepatitis A (usually contracted in developing countries where water sanitation is questionable, although I was in the developed north when I caught it) some three years ago, likely as a result of being an undiagnosed celiac and living in a state of immunosupression. It's tricky because there is this vested interest between the Dr-patient relationship, born out of time, and I find it often creates this hindered state of reliance on the Dr because of the attachment that forms when this person cares for you at (for most people) your most vulnerable times.

In any case, I digress. I am moving, so a second opinion is imminent. And as for getting a copy of my results, this will be forthcoming as well. That said, I believe in the mind-body connection, and part of me doesn't want to research my symptoms and abnormalities to death for fear of materializing false realities. Part of me, just wants to stay active, eat clean, focus on minimal stress existence, and enjoy. It freaks me out to go into body detective mode, only to realize there is little I can do beyond the alternative health route, which I'm following, at least some variation of it, in any case.

Final question for you mushroom: when your cell volume was "slightly" out of range, what effects did it have on your body and (I lied...two questions) how did you regain equilibrium or homeostatsis in your bod?

Thanks again for your prompt insights.

[rawvegan]

Hi Rawvegan,

Health can be such a complicated, frustrating thing. I suggest you look forward however and don't give up. No doubt you will unravel the puzzle with applied persistance.

Have your doctors checked your vitamin levels? You could be low on B12 most especially if you are a vegan. You might also be low on vitamin D, commonly gotten from fish oil if not absorbed readily enough from sunlight due to damaged systems from the celiac etc.

Also note, you can make 24 hour yogurt. It isn't raw, since its usually suggested to heat the milk before cooling a little and innoculating it, however the yogurt culture is raw. Alternately 3 day fermented chopped cabbage inoculated with either pro-biotics or some live yogurt could possibly help your gut get back into control. By letting the yogurt ferment 24 hours plus; all the lactose is thus fermented out.

I would normally suggest the specific carbohydrate diet (scd), however it might be difficult for a vegan to wrap his or her head around. Nevertheless, it may be your body may actually crave a different diet than what your head tells you. I had to change back to meat years ago just because eating vegan did not work for me. I tried twice for two years at a time, and each time after a while became more sick than I had been despite all the wonderful health claims the vegan diet has.

Vegan works well for some, but not for others. People with celiac and related disorders often have to eat in a more cave man like fashion. Who can fault nature?

There is a thread here on the specific carbohydrate diet if you are interested... The whole deal with simple carbohydrates vs complex ones could be very much of interest to you for resolving many of your complaints. Maybe you could do some kind of combination thing of partially raw foods and scd...the best of both worlds. Check out Elaine Gottschall's book: Breaking the Vicious Cycle online and/or in print if you get a moment.

Meanwhile, whatever direction you take, take note that many of us have had to simplify our diets and go off all grains and often times nuts and a variety of other things due to leaky gut condition that unregulated celiac tends to create. That includes juicing raw grains too, I hope you realize...and avoiding candida inducing foods (in case you have candida overgrowth).

Good luck!

Bea

Bea! I've read a number of your posts over the past year or so (it was only yesterday I decided it was time to join the dialogue...slightly concerned how this will affect my diminishing spare time, in any case, here we are). Fittingly, I was doing so in a bid to learn more about the SCD, as it appears many people have had serious success by following it. That said, I need little conviction in the art of probiotics or live bacterial cultures and their pertinences to a healthy gut. I try to eat sauerkraut for this purpose daily. Yet, given all the research I've done relating to hormones and their correlation with dairy and meat industry, environmental ramification, and animal rights affection, what repels me from the SCD is the yogurt/dairy and meat.

Nevertheless, I have thought about adding meat back into my diet to see how I feel, but to be honest, it really doesn't appeal to me at all. I might be able to coax myself back onto fish, but there's nothing about meat that appeals to me, and from a physiological standpoint, the research I've done backs this up.

As for cooked pseudograins (quinoa, buckwheat, amaranth, millet) or carbohydrates (rice, potatoes, corn), I tend to feel better when I avoid them. However, I try to squeeze quinoa for iron and buckwheat for nutritional excellence into my diet occasionally. Other than that, I have a daily green shake, and the rest of my calories come from fruits, veggies, nuts, seeds, and pulses. I have also noticed that severely reducing fruit (one a day...and before any alkaline food), that my bloating is significantly less.

I suppose my big questions for you are: what's your take on the dairy and meat hormone pitch? Can you elaborate on the nut fact you alluded to above? For the pseudograin family, where do they come into (or out of) play? As for candida overgrowth, I've read a bit about this, but is there a particular place I should look for candida info? And what is your take on alkaline-acidic diets?

[mushroom]

It's tricky because there is this vested interest between the Dr-patient relationship, born out of time, and I find it often creates this hindered state of reliance on the Dr because of the attachment that forms when this person cares for you at (for most people) your most vulnerable times.

In any case, I digress. I am moving, so a second opinion is imminent. And as for getting a copy of my results, this will be forthcoming as well. That said, I believe in the mind-body connection, and part of me doesn't want to research my symptoms and abnormalities to death for fear of materializing false realities. Part of me, just wants to stay active, eat clean, focus on minimal stress existence, and enjoy. It freaks me out to go into body detective mode, only to realize there is little I can do beyond the alternative health route, which I'm following, at least some variation of it, in any case.

Final question for you mushroom: when your cell volume was "slightly" out of range, what effects did it have on your body and (I lied...two questions) how did you regain equilibrium or homeostatsis in your bod?

It is tricky because you do want to have a doctor to whom you can turn at any time for anything; in fact, you need that. On the other hand, you can (depending on where you live and your insurance) still get a second opinion from someone else without interfering with that relationship; just a back-up opinion if you like.

It is tempting to be flamingos and put our heads in the sand and pretend like this is not something I need to do more about than live and eat clean and healthy. I did that for a long while before I ended up with my psoriatic arthritis and came to the realization that not all of us can get away clean with ignoring things. I have a sister who has the same symptoms I had (no arthritis) who says "I just get on with it" as if I (and my celiac other sister) are just making a big fuss out of nothing. I just hope she escapes any other repercussions. My celiac sister has severe osteoporosis and strange debilitating myalgias and a severe sensitivity to chemicals, especially the garden spray type.

My blood mean cell volume normalized when I made my PCP test me for the normal celiac deficiencies (since I am self-diagnosed), and I started supplementing low levels of D3, B12, and folate. I also took a mega-B complex and a mega multi-mineral for magnesium, zinc, calcium, and selenium and boron which are very low occurring naturally in New Zealand. The effects on my body were extreme lethargy, lack of motivation and ambition, tiredness, depression (feeling like I wanted to cry all the time), and coldness (which I still have and am sure is due to my subclinical hypothyroidism--I think if I can talk her into giving me 25 mcg of levothyroxine I might be able to swear short-sleeved tees in the summer)

[JNBunnie1]

I suppose my big questions for you are: what's your take on the dairy and meat hormone pitch? Can you elaborate on the nut fact you alluded to above? For the pseudograin family, where do they come into (or out of) play? As for candida overgrowth, I've read a bit about this, but is there a particular place I should look for candida info? And what is your take on alkaline-acidic diets?

Just my two cents!

I would say eat organic if you want to avoid hormones in meat, and find a raw dairy farmer near you. Realmilk is a website that lists all the raw milk providers that sign up in the US.

Also, alkalising is good, and if you're trying to then the green shakes are a good thing, and also try apple cider vinegar, Bragg's has the mother. My Trader Joe's carries cheap organic spirulina.

[rawvegan]

It is tricky because you do want to have a doctor to whom you can turn at any time for anything; in fact, you need that. On the other hand, you can (depending on where you live and your insurance) still get a second opinion from someone else without interfering with that relationship; just a back-up opinion if you like.

It is tempting to be flamingos and put our heads in the sand and pretend like this is not something I need to do more about than live and eat clean and healthy. I did that for a long while before I ended up with my psoriatic arthritis and came to the realization that not all of us can get away clean with ignoring things. I have a sister who has the same symptoms I had (no arthritis) who says "I just get on with it" as if I (and my celiac other sister) are just making a big fuss out of nothing. I just hope she escapes any other repercussions. My celiac sister has severe osteoporosis and strange debilitating myalgias and a severe sensitivity to chemicals, especially the garden spray type.

My blood mean cell volume normalized when I made my PCP test me for the normal celiac deficiencies (since I am self-diagnosed), and I started supplementing low levels of D3, B12, and folate. I also took a mega-B complex and a mega multi-mineral for magnesium, zinc, calcium, and selenium and boron which are very low occurring naturally in New Zealand. The effects on my body were extreme lethargy, lack of motivation and ambition, tiredness, depression (feeling like I wanted to cry all the time), and coldness (which I still have and am sure is due to my subclinical hypothyroidism--I think if I can talk her into giving me 25 mcg of levothyroxine I might be able to swear short-sleeved tees in the summer)

Hello again,

Second opinion is an option with our Canadian health care system, I actually looked into this last year. Nevertheless, me being a transparency freak asked my gastroenterologist if he could suggest any colleagues to review my case (for good measure). I don't think he was offended, but true to his style, he seemed to brush it off as unnecessary. Hopefully my new abode will provide a celiac savvy gastroenterologist, better yet, I'll have to seek out the likes.

I like your flamingo description. My mom suffers from extreme skin conditions that dermatologists have yet to diagnosis. She also had serious food allergies as a child, and from what I can tell, I wouldn't doubt she has celiac. Yet, similar to your sister's apparent denial, I don't think my mom would impose any form of dietary changes without concrete physician evidence. It's sad, as I've asked her a number of times what the harm is in trying out a gluten free diet to see if her skin aliments dampen or disappear altogether, but she's quite unwilling. Why? Simply put, I think she, along with many SAD (standard american-style- diet) consumers are addicted to crappy food. Combine this with the utter inability to handle or desire to make serious lifestyle changes. Complex issues we're dealing with, but ultimately it comes at the expense of the individual. At least that's how I perceive it right now.

What I think we really need is a cultural shift in the way we approach and conceptualize difference or change. If we can somehow embrace change with curiosity rather than repel it out of deep-seeded fear, I think we could build healthier societies. It's that simple.....right.

Okay, supplements, you seem to be savvy in this area as well. I take a number of herbal supplements, multivitamin, iron, vitamin D, probiotics, L-glutamine, and calcium supplement, but went off them over the last three months to see how my body would feel. I prefer to get my nutrients from whole foods vs. skeptical naturalceuticals (These products aren't regulated. Companies can essentially serve you 99.9% filler and 0.1% supplement. We don't know if the particular extraction is the component that our bodies needs-ex: garlic supplements, what part of the garlic are they taking? Is that the beneficial part? Also, there has been a bunch of research done on absorption of tablets vs. liquid. Whereby some supplements simply go right through the body.). Yet, as I mentioned from my preliminary post, my antibodies went up by 3. Now, because we're complex, there is no way of telling if the 3 point jump came out of additional stress, cross contamination, when my blood was tested (hormonal cycle and exercise are both things affecting blood results), or the lack of supplementation in my life. This is compounded by the fact that some nutrient reserves take years to deplete, so a mere 3 month supplement free trial is likely not enough.

My decision is to go back on my religious supplementation regime. I don't know if it's a placebo effect thanks to the power of our mind, or if they are helping, but as of now, it seems I was healing with my old regime and regressing with the trial one.

Alright...I'll stop ranting now. Thanks again for your quick response, and lovely to read that you're from New Zealand. I'm curious to know how much it bothers you when people refer to things like "developed" north or even Standard American (!) diet that I referred to above. I usually add massive footnotes to most ridiculously simplified terms, but alas, sometimes it's tempting to just power through the rant. I ask, because I really don't understand why we latch to terms that are in fact inaccurate of our existence. Does it take that much more time to be explicit about what society, culture, diet or nuance we're talking about?

[rawvegan]

Just my two cents!

I would say eat organic if you want to avoid hormones in meat, and find a raw dairy farmer near you. Realmilk is a website that lists all the raw milk providers that sign up in the US.

Also, alkalising is good, and if you're trying to then the green shakes are a good thing, and also try apple cider vinegar, Bragg's has the mother. My Trader Joe's carries cheap organic spirulina.

Thanks for the more than 2 cents...much appreciated. I have thought of the organic meat route, although I remain skeptical about meat in general. As for raw milk, I've heard there are health concerns with contamination and such. I simply would rather avoid it at this point-but thanks for the rekindled reminder.

Alkaline diet yay-glad to hear it. I'm a supporter of apple cider vinegar (Bragg's brand too!), although am open to recipe suggestions. Outside of mixing it in with salad dressings or with beets, I usually marvel at it on the shelf. Spirulina, I use NOW brand (gluten-free), I've heard it's great for protein. That said, I find it makes my green shakes taste a little funky, so I end up rotating every 2nd day or so...