Category: Melissa's Earlier Blogs
I must say that I'm happy to have the holidays and their avoids, behind me. It was great fun, but I had a few too many avoids. I did avoid all gluten, and that's a good thing. Only one more holiday event coming up, a big dinner at a restaurant. I know from experience that it's too risky for me to actually eat there...so I'll bring some chewy finger food and sparkling water, and I'll just focus on and enjoy the company.
Loved Isa's blog today. I'm a new student of the law of attraction, but I can see it all around me now that my eyes are open to it. Funny thing is, you probably can tell that I'm rather obsessed with the gluten-free lifestyle, it's in my thoughts quite a bit. I went out to visit my parents in rural utah for Christmas, and stayed in the house most of the time, but one of the times I did go out I met two other women who were gluten free. I probably only talked to 4 or 5 strangers that evening, but two of them were gluten free! What are the odds of that? Of course, the topic always comes up at a restaurant, and my server was also gluten-free and dairy-free (now that's always a sigh of relief!). My other stop was at a pharmacy to get my MetaNX (B6/B9/B12) refill, and the pharmacist's assistant had just been diagnosed with celiac disease a few weeks prior. (MetaNX is usually prescribed for coronary artery disease...not what I have, but it has done wonders for my HDL cholesterol!)
One thing that The Secret video says, about the law of attraction, is that it's better to focus on what you're FOR rather than what you're AGAINST, as in, have a peace rally instead of a war protest...if you want to really reach a goal. I'm trying to think of a way to apply this to the gluten free diet. What else could I call it, besides gluten-free? Health-full is accurate but not quite specific enough...how do you specifically say you don't eat something in positive terms? Celiac diet is descriptive, but as the name of a disease it's still not a positive way to say it. I'm open to ideas, because I can't quite pin down the right words. So many foods are described as much by what they are free of, rather than what they actually are... bone-building diet? Digestable foods diet. Nutrient-dense is good, but still not specific.
Dr. D'Adamo has said something like "telling people what not to eat helps them get less sick, but only telling them what to eat makes them well" so one of my goals is to focus on the beneficials.
It's been a wild ride this year, but I've learned a lot. I actually did lose some height due to the vitamin D deficiency, and resulting hypocalcemia and bone loss. So the upside is, that I can now have a unique goal for a nearly-32-year-old this year...to get taller! I'm grateful to know my path to wellness, I'll focus on the expansive scenery along the way, and the company I keep, rather than the narrowness of the pathway!
What will celiac disease be in the future?
Currently it is a very under-diagnosed condition, but quite common, I read that it is more common that Crohn's, Colitis and IBS combined, and that's just at the current conservative estimate of 1 in 133. Awareness is growing, and so are our options.
First off, there is more access to gluten-free foods. I can carb out and junk out almost as much as a non-celiac. In my case, that's not always a good thing,
The best improvement now is the access to information. Sometimes it is overwhelming, so I'm glad I can read everything through the lense of the BTD. Corn and soy are pretty prevalent in GF food, and it's nice to know I do feel so much better without them.
Will a wonder-drug come out for celiac disease? Will I take it?
The zonulin-receptor-antagonist looks promising, not only for making it so celiacs can eat gluten, but also for many of the associated complications of celiac disease which can affect the skin, lungs, blood/brain barrier, nervous system, or any system in the body. A drug for CD would also serve to improve the rates of diagnosis. Once a drug company starts pushing a drug for it, doctors will start testing for it so that they can prescribe said drug. I'd bet that testing would be simplified as well, and maybe biopsies wouldn't even be necessary any more. Once the GF diet is no longer considered a major lifestyle altering event, perhaps they won't be so selective about how much damage has to be done before treating it. Most people are more eager to get a diagnosis that just involves popping a pill, than one that changes their whole way of eating and socializing.
Will I take the drug? As much as I prefer to not take drugs, I would consider it. It may make other drugs unnecessary for some celiacs, and may even have some positive side effects. However, first I'd want to understand why we produce zonulin in the first place, and why we need to block it's effects. There must be some reason why the body produces some zonulin, is it just a genetic error that makes some of us produce too much, or respond to it the way we do? Stomach acid isn't a bad thing, when the right foods are eaten, likewise can zonulin be all bad?
If I did take the drug, I still would avoid gluten. It would be a nice bit of armour for those times that gluten sneaks up on me, but I wouldn't use it as a license to eat krispy kreme. Nope...nothing can convince me to eat wheat-laden junk again. Not even a slice of fresh San Francisco Sourdough on Christmas day? Hmmmm. I'm not going to think about that option anymore...not an option. Whoa...it's been a long time since a thought like that has gotten into my head. <
Ok, back on track. I think things will continue to make life easier for celiac disease patients. Some of it may be a mixed bag, but things are getting easier and better.
As my readers know, I never had a biopsy to confirm celiac disease. Sometimes in celiac circles, or especially doctor’s offices, I am left feeling like I’m not a true bona-fide celiac. It doesn’t bother me enough to go and do the challenge, make myself sick, and get the biopsy (which may or may not be accurate) to find out… but it does bother me. Would I rather trust a lab than listen to my own body? Would I want to risk a false negative and continue poisoning myself? No and no. The damage, to whatever extent, had gone far enough. Gluten sensitivity, even if that's all I had, can have the same complications that bona-fide celiac disease has. I think a biopsy, if I had had one at the right time, would have shown damage, but regardless, whether I'm first-class or second-class, they are equally serious...
Quote from enterolab website:
"Do my positive results mean I have celiac sprue or that I need an intestinal biopsy?
The immune reaction to gluten is gluten sensitivity. Testing for the presence of an antibody produced against gluten is the diagnostic hallmark of gluten sensitivity (for years in the blood, and now more sensitively detected in stool with our testing). Although the immune reaction to gluten, i.e., gluten sensitivity, is the cause of the villous atrophy of celiac sprue, having these antibodies in stool, or even malabsorption, does not necessarily mean you will have detectable villous atrophy in an intestinal biopsy. But why does it matter, since it is known that a person can have every last complication from gluten sensitivity and never have villous atrophy? In other words, one can have gluten sensitivity damaging the intestine on a sub-microscopic level destroying function, or damaging other organs/tissues without having celiac sprue. Thus, there is no reason to expose yourself to the risks, invasive nature, and expense of an intestinal biopsy. This idea is not new. Some have said this for years with respect to positive antiendomysial antibodies. Now we extend this ideology to our stool testing; if you have the immune reaction, and especially if you have detectable malabsorption, symptoms, and/or immune disease, what is there to wait for to go gluten-free? And if you have none of these consequences, why wait for them to appear? Be thankful you do not, and go gluten-free."
I was doing a bit of research on gluten ataxia, as an article came out in Living Without about it. Since my brother’s amnesia, I have a deep interest in the topic. The man in the article also had memory loss, though only temporarily. So I did some searches online and was surprised to find that, once a neurologist has ruled out everything else, the diagnostic hallmark of gluten ataxia is the presence of antigliadin antibodies in the blood. That test, antigliadin IgG, is the same test that gastroenterologists say is meaningless in diagnosing celiac disease. Those with gluten ataxia will be sent in for a biopsy, but whether the biopsy shows damage to the villi or not, they are put on a gluten free diet, and if the antigliadin IgG goes down, their recovery is very likely.
Now, there are some things that can keep the antigliadin IgG from going down like it should, one of these things is cross-reacting. That is when the body confuses other proteins for gluten, usually casein (milk), but also possibly soy, and remotely possibly corn (as we learned from dogtorj in the link I posted last time. Enterolab provides tests for soy and casein sensitivity, as well as a few others. Unfortunately they don’t have one for corn. Another thing that can keep antigliadin IgG from going down is cross contamination.
Unfortunately I had a bad time from cross-contamination this week. I was using a sponge to scrub pans that had gluten cooked in them, for those in my house that can eat it, namely stuffed ravioli. After scrubbing it thoroughly, I put it in the dishwasher to complete the cleaning. Well, somebody else helped in the kitchen and used that same sponge to scrub my cast iron frying pan. Cast iron is porous enough that this was a problem, and it’s not something that can be cleaned in the dishwasher. Can you say bye bye sponges, and hello new pans for Christmas?
I've had 4 days now of feeling lousy, clumsy, weak, bathroom-dependent, and moody. Last night I started getting hypocalcemia symptoms again-numbness, so I took extra doses of calcium and a tad extra vitamin D, to make up for lost absorption. I took the good stuff too, phytocal. That seemed to help the symptoms within hours.
After Thanksgiving (I swore I wouldn't do it, but I did have some dairy) I am now positive that I am casein intolerant and that my body confuses casein with gluten. Maybe pregnancy triggered it into full swing, but I've always gotten moody after having dairy, even goat. Now, my Dermatitis Herpetiformis (celiac disease of the skin) gets itchy and inflamed if I have dairy, and of course, I have to run to the bathroom a few times. I suspect it is dairy that started my DH and similar new celiac symptoms, although it could have also been the restaurant roulette I played for a while...what can I say, maybe I'm a compulsive gambler but no more.
Soy also does more to me digestively, so I could be soy intolerant as well. I've eaten at PF Chang's a few times, because in all the years they've never accidentally glutened me. Although I did have some items with soy and ugh!
So here we are...gluten, casein, soy and corn. Corn doesn't give me digestive upset yet, but more than makes up for it with the other add-ins.
I'm researching how food intolerances and Vitamin D deficiency may be related, and found this link: http://www.dogtorj.net/id26.html and I'm looking for more like it. His assertion is that all four foods are glue-like, and coat the intestine, and can all induce damage to the villi and malabsorption and then some! Interesting facts from a veteranarian standpoint, that some breeds of dog have had severe health problems since they started putting wheat and milk in dog foods.
If I were to look at everything from a simply celiac view, I would say it's a major bummer to not be able to eat the other three...they sure help in baking... but knowing what we know with BTD, it's no surprise. Why I use myself as a guinea pig to find out all these details, I don't know, I'd be better off if I just maintained compliance. At least I've reached a point where compliance is rather second-nature, without undue tempation and stress, so that's good. There's some sources that say once my vitamin D deficiency is cleared up I won't have so much trouble with food cravings...I look forward to finding out that there is truth in that!
Oh, and here's an informative link for info on hypocalcemia: http://www.clevelandclinicmeded.com/diseasemanagement/endocrinology/hypocal/hypocal.htm* This could explain so many things for me...I hope it's one of those health-changing answers. So far so good; I'm able to withstand stress better, numbness sensations are maybe weekly at most, rather than many times a day, and things are just looking up in general.
*Ok, that link is a little scary, in my case the cause of hypocalcemia is known, simple vitamin D deficiency (if a vitamin D deficiency can be simple! ), and the doctor did draw quite a few vials of blood to rule out other problems, which turned up no surprises. I found the description of symptoms and what can cause them to manifest to be of the most interest, since I'd been trying to figure out the cause-and-effects for a long time.
P.S. Have I mentioned that if you get your vitamin D level checked, they need to check both forms, (25 and 1,25), and preferably see an endocrinologist, especially if either of those is off. It's all a complex web, and it can take a specialist to descipher it. I had a blood test showing a slight magnesium deficience years ago, which could very well be part of the web...but the usual response I get from usual doctors is "don't worry about it, just eat a little more of this or that" I say why do they run the darn test if they aren't going to look into any anomaly it turns up? Same goes for the anti-gliadin IGG test, if doctors are going to dismiss the results, then why do they run it? If it's high, but all the IgA tests are negative, then maybe IgA deficiency is something to look into before dismissing celiac possibilities...yeah, sure is.
It's not going to be instant, but my rate of improvement has definitely picked up after 8 days of high vitamin D doses. Maybe it will help my seasonal affective disorder.
I got hold of more medical records, I always try to keep on top of them and keep copies for myself. I said "What?!" when I read the report from my bone scan. They told me that day that it was normal, though I wasn't going to be surprised if I heard it wasn't quite normal. The lab report read "borderline osteopenia", so that's not what I'd call normal. That could be expected with a vitamin D deficiency and my body trying to normalize vitamin D and calcium levels. My endocrinologist also wasn't surprised by the results, didn't call then 'normal', but expects to see improvements.
I guess it could be said that my nerves saved my bones, because that's what it took to get it all checked out. My nerves are actually fine, I think, it's just the conduction that gets lost a bit without adequate calcium, I don't believe there would be any nerve damage from that. That's good news because nerves don't heal fast.
I don't really want to go back to the neurologist, but after the vitamin D has done its job I may go in for a follow up. It's a rather depressing office, and their attention, understandably, goes to people much sicker than I am. I've definitely learned to never take my nervous system for granted again, that scare certainly made other health problems I've had in the past seem small.
Anyway, I'm practically eating calcium pills like they're the other white meat, doctor's orders. I expect to see some improvements on my bone scans in the future.