Introducing myself
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Okay, I'm back. Hubby is sleeping off jet lag (12 hour time difference) and my grandson is down for a nap.
To continue my story...even though things improved with eating coconut macaroons, I still couldn't identify any guilty foods. I switched from macaroons to just eating flaked unsweetened coconut, about a tablespoon every morning. But I really wanted to get to the bottom of things. I was afraid that if I went back on Entocort, in addition to it costing a lot, it would only suppress the symptoms for a while, and what would happen when the symptoms overwhelmed the suppression?
I followed the advice of the PP, and went totally gluten-free in October 2 years ago. This time I learned how to do it properly, including all those hidden places. After Thanksgiving, I did the Enterolab testing (gluten, dairy, soy, eggs, yeast, which was what was offered then) and found that I am intolerant to gluten, dairy, and soy. I eliminated all of those from my diet, and also eliminated all legumes, just to be on the safe side. And lo and behold, I guess you CAN develop sensitivities overnight. Of course, they were there much longer, but the symptoms did start pretty much overnight.
I'd encourage you do to the Enterolab tests, because it gives you a starting place. I had tried so hard to figure things out on my own, and I couldn't, that it felt really good to have some solid test results to go by. It's expensive, but definitely worth it, especially if it is in place of paying for medicine. For me, it was way better than just guessing and making stabs in the dark.
If I had it to do all over, and knew what I know now, I would have used the 3 months I was on Entocort to change my diet and get a jump-start on healing my gut. It really does seem like diet is the key to controlling MC. Diet and patience.
All the best to you, Jennifer. I hope you get relief soon.
Love,
Martha
To continue my story...even though things improved with eating coconut macaroons, I still couldn't identify any guilty foods. I switched from macaroons to just eating flaked unsweetened coconut, about a tablespoon every morning. But I really wanted to get to the bottom of things. I was afraid that if I went back on Entocort, in addition to it costing a lot, it would only suppress the symptoms for a while, and what would happen when the symptoms overwhelmed the suppression?
I followed the advice of the PP, and went totally gluten-free in October 2 years ago. This time I learned how to do it properly, including all those hidden places. After Thanksgiving, I did the Enterolab testing (gluten, dairy, soy, eggs, yeast, which was what was offered then) and found that I am intolerant to gluten, dairy, and soy. I eliminated all of those from my diet, and also eliminated all legumes, just to be on the safe side. And lo and behold, I guess you CAN develop sensitivities overnight. Of course, they were there much longer, but the symptoms did start pretty much overnight.
I'd encourage you do to the Enterolab tests, because it gives you a starting place. I had tried so hard to figure things out on my own, and I couldn't, that it felt really good to have some solid test results to go by. It's expensive, but definitely worth it, especially if it is in place of paying for medicine. For me, it was way better than just guessing and making stabs in the dark.
If I had it to do all over, and knew what I know now, I would have used the 3 months I was on Entocort to change my diet and get a jump-start on healing my gut. It really does seem like diet is the key to controlling MC. Diet and patience.
All the best to you, Jennifer. I hope you get relief soon.
Love,
Martha
Martha
Hi Jennifer and welcome. I feel your pain. I didn't want to believe I had this disease either. I was always so healthy ( I am a personal trainer) and always ate "healthy" foods. I also didn;t want to believe gluten was my problem. It took me a month to wrap my head around giving it up.
If you really want to know what you are intolerant to, there is a lab called Enterolab ( look up the web site). It is pricey, but if you can afford it, it will speed up the food elimination process. I couldn't get any results because I ended up being IgA deficient ( another story), so had to do it the old fashioned way.
I don't tolerate Pepto. I went on Entocort and took gluten and dairy completely out of my diet. I also didn't eat nightshades ( potatoes, tomatoes, peppers, eggplant), any raw fruits and veggies, fiberous foods like beans, alcohol, coffee, or tea. I basicly took out anything I thought might give me problems so I could heal as fast as possible. Later I had to remove soy also. It was very hard, but I kept telling myself that I'd be able to add some of these things back in later.
It took about 6 months to wean completely off Entocort, but I am off and I have added many things back into my diet! We are all slightly different, but what worked for me was lots of protein, cooked veggies, rice, some corn products ( like tortillas), sweet potatoes, canned peaches, almond butter on rice cakes...etc.
I now only go to the bathroom once a day and have very few problems with pain or gas unless I eat or drink something that I shouldn't. I can even have small amounts of things that contain trace amounts of milk and soy with very little effect!
Things can get better! it's a long bumpy road figuring it all out, but well worth traveling.
Good luck and let us know how it is going.
Leah
If you really want to know what you are intolerant to, there is a lab called Enterolab ( look up the web site). It is pricey, but if you can afford it, it will speed up the food elimination process. I couldn't get any results because I ended up being IgA deficient ( another story), so had to do it the old fashioned way.
I don't tolerate Pepto. I went on Entocort and took gluten and dairy completely out of my diet. I also didn't eat nightshades ( potatoes, tomatoes, peppers, eggplant), any raw fruits and veggies, fiberous foods like beans, alcohol, coffee, or tea. I basicly took out anything I thought might give me problems so I could heal as fast as possible. Later I had to remove soy also. It was very hard, but I kept telling myself that I'd be able to add some of these things back in later.
It took about 6 months to wean completely off Entocort, but I am off and I have added many things back into my diet! We are all slightly different, but what worked for me was lots of protein, cooked veggies, rice, some corn products ( like tortillas), sweet potatoes, canned peaches, almond butter on rice cakes...etc.
I now only go to the bathroom once a day and have very few problems with pain or gas unless I eat or drink something that I shouldn't. I can even have small amounts of things that contain trace amounts of milk and soy with very little effect!
Things can get better! it's a long bumpy road figuring it all out, but well worth traveling.
Good luck and let us know how it is going.
Leah
-
Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Sounds like you are on your way, Jennifer. I just returned from an annual appt. with my PCP, and the GI doctor had sent my very skinny LC file to the PC doc.
The primary doc looked me in the eye and asked what LC was. He said he was curious but I didn't feel he actually listened to my answer. He looked it up on his handy dandy laptop and read back the short paragraph definition. Then he told me to call if I needed help or meds instead of diet for it.......huh?
This is not atypical of many doctors here unfortunately. I know Leslie thinks the west coast is a desert without informed GI doctors. I am inclined to extend that opinion to internists as well. Actually the doc most interested in learning was a dermatologist who was most interested in the fact that my psoriasis had disappeared with a g/f diet.
Christine
The primary doc looked me in the eye and asked what LC was. He said he was curious but I didn't feel he actually listened to my answer. He looked it up on his handy dandy laptop and read back the short paragraph definition. Then he told me to call if I needed help or meds instead of diet for it.......huh?
This is not atypical of many doctors here unfortunately. I know Leslie thinks the west coast is a desert without informed GI doctors. I am inclined to extend that opinion to internists as well. Actually the doc most interested in learning was a dermatologist who was most interested in the fact that my psoriasis had disappeared with a g/f diet.
Christine
Hi Jennifer,
From my experience with pepto........2 pills a day would have been nothing. I was taking 8 a day for 8 weeks and unfortunately for me I saw NO relief until I was 5 weeks into pepto and the potty folks here lead me to go GF. Once I did that I reduced my times a day drastically but I still wouldn't leave the house because it was still 4 to 6 times a day.Once I started entocort and I had been GF for 3 weeks I saw immediate results. Now don't think I'm not worried about what is going to happen when I wean off of it.........I'm totally scared it's going to come back. Hang in there....up your dose as you see fit........there have been several folks here that have done well with it.
On your apple ordeal........I found that cooked apples are definately better for my tummy but if I wanted a 'real' apple....if I peeled them I could handle much better. I have to peel my tomatoes as well and then seem to do fine. Check out Dee's recipes on this site..........there is some great meals on there. I highly recomend the turkey and carmelized onions!!!! OMG I think I refer every newbie to that recipe. I fix it now with chicken sometimes as well. Delicious!!!! That's if your tummy can handle cooked onions too.
good luck
From my experience with pepto........2 pills a day would have been nothing. I was taking 8 a day for 8 weeks and unfortunately for me I saw NO relief until I was 5 weeks into pepto and the potty folks here lead me to go GF. Once I did that I reduced my times a day drastically but I still wouldn't leave the house because it was still 4 to 6 times a day.Once I started entocort and I had been GF for 3 weeks I saw immediate results. Now don't think I'm not worried about what is going to happen when I wean off of it.........I'm totally scared it's going to come back. Hang in there....up your dose as you see fit........there have been several folks here that have done well with it.
On your apple ordeal........I found that cooked apples are definately better for my tummy but if I wanted a 'real' apple....if I peeled them I could handle much better. I have to peel my tomatoes as well and then seem to do fine. Check out Dee's recipes on this site..........there is some great meals on there. I highly recomend the turkey and carmelized onions!!!! OMG I think I refer every newbie to that recipe. I fix it now with chicken sometimes as well. Delicious!!!! That's if your tummy can handle cooked onions too.
good luck
Cathy
-
guitarlover
- Posts: 11
- Joined: Sat Jan 26, 2013 1:41 am
Re: Introducing myself
Hi Jennifer,
I'm new here too and seeing lots of interesting posts to comment on. I started on a relatively short reply to one of your posts, but then something you said made me think that I ought to look back through your stuff for some other things, and that got me to look at more posts. So this is just one post responding to several of yours. I'm sorry for the length, but at least this is the last from me for a long, long while. I've too much reading to do with a stack of 9 books (no, 10--another one just arrived), mostly health-related books that I've bought but not had time to read yet! That doesn't even count the various books for Adobe CS5 that I fully intend to actually study--one of these days.
I ordered Wayne's book a couple of days ago too, though in doing it somehow I missed seeing the link to Amazon at the top of the page here. I think I have trained myself to ignore things like ad boxes that usually have nothing at all to do with a webpage's content. I didn't even see or read that box until I read someone's post mentioning it after I'd placed my order. Sometimes I am just totally out of it. At the moment I'm totally out of it trying at a distance to diagnose your problems, all in one amazingly long piece of writing. Read this at bedtime when having difficulty getting to sleep.
I read your fairly recent post about feeling famished. And instantly I thought: diabetes. (That's a natural for me, because I have that problem. But take my thoughts with a grain of salt: if I knew more about the other possibilities, I'd likely be instantly thinking it was those other possibilities too.) In diabetes, you're starved because, indeed, at the cellular level your cells are screaming out for glucose... which your brain translates into screaming to take in more food.
==DIZZINESS==
Dehydration might be one possibility. You might want to have some simple testing done in which dehydration might show up.
==MUSCLE SENSATIONS AND SPASMS==
That's very, very familiar here, except that I'd add that it's painful and not on the verge of painful and for me. It happens daily, especially at night. It feels just as if there's a pinched nerve getting hit somewhere and getting ready to explode. It's painful enough that it keeps me up for hours during the night, most every night, and during the day when I try to sleep too. Quite often my legs will involuntarily jerk out from my body from the pinch of that pain. And it quite often happens just at the point when I'm finally drifting off to sleep, which doesn't happen all that easily anyway when I'm sitting there, feeling anxious and worried that those horrible pains are going to strike at any moment. I rarely am able to sleep more than an hour and a half at a stretch, and when I wake up, I feel really bad, especially with stabbing burning pains to my hips and where I sit. I've other problems contributing to the pain, but that one alone would be enough to make sleep impossible most days. And your body can't recover from much of anything if you can't get good quality sleep.
I also have had actual spasm problems--daily problems--with muscles going into severe spasms all over my body. The very worst incidences were connected to taking Lipitor, which fortunately I finally decided to take myself off of. The problem with Lipitor for me was myopathy, a known problem with that drug, but a fact I was unaware of at the time I started on it. Because I was in such bad shape and getting worse all the time--I'd wake up screaming uncontrollably from the most severe of muscle spasms all over my body. Even though I'd described what were obviously life-threatening muscle spasm problems to my doctor--the heart is a muscle too!--he kept on with the prescription typically issued for cholesterol problems that I guess he learned to do automatically in med school. He kept me on the drug for far, far too long--until I smartened up on my own. Or maybe he didn't know or remember the warnings attached to its use, one or the other.
But I still do have some spasm problems; they're just not remotely in the ballpark to what I once suffered from with Lipitor. With Lipitor, it felt as if I were on my deathbed a time or two with spasms that made childbirth seem like a picnic. I'm figuring it's the dehydration causing the spasms now, though, when I get them, since when I skip my diuretics it does noticeably help a great deal with the tendency to have a muscle spasm or feel as if a spasm might be imminent.
==MAGNESIUM==
Sounds like a good possibility. Read Carolyn Dean's "The Magnesium Miracle" to find out more. Lots of people--the majority of people--would benefit from taking a magnesium supplement daily. You might think that you're getting enough in your daily multiple vitamin (if you're taking one) but no, that supplement probably contains the magnesium stearate form of magnesium that the body can absorb only at about a 5% rate. Magnesium citrate is a good inexpensive magnesium supplement and the body can absorb about half of the magnesium there. Assuming you're not in renal failure, you could get started taking magnesium now and I'd bet you'd see some improvements.
==JOINT PAIN==
Me too. A general body inflammation reaction can account for all of that, I think. In my case the inflammation led to psoriasis, arthritis, fibromyalgia, and potentially the kind of kidney disease with psoriasis involvement.
At first, shots of cortisone used to help my worst knee, but then the shots stopped working. I wish I'd done some internet work on my own then to find other ways of helping, but I figured the orthopedic doctor would have come up with it if there were anything else that might work. (Synvisc--turkey waddle--was tried and didn't work for me.) Other things I wished I'd had the nerve to try then when it might have prevented crippling damage: some supplements with a good reputation for helping generally with inflammation or arthritis:
Ashwagandha
MSM, Methylsulfonylmethane
Bromelain
Quercitin
N-A-G, N-Acetyl Glucosamine
Osteobiflex
At this point, I really do believe that diet changes might have worked to save me from becoming crippled, if only I'd known early on to try drastic adjustments away from sensitive food selections to reduce inflammation. I'm glad that you're working on your problems now, and maybe they won't get any worse.
==RAYNAUD'S==
I have at times suspected Raynaud's here too. I've found that some cozy loose mittens containing a gel that can be microwaved will hold the heat for a long time and that it does help with the feeling of freezing in the hands. http://www.warmmeups.com
==CIRCULATORY PROBLEMS & NERVE DAMAGE==
That can be a sign of diabetes, though no doubt it can be a sign of a zillion other things too. The problem for diabetics is that the peripheral circulation is especially poor, and this also affects the blood supply to the nerves in the periphery, so the nerves sometimes don't function as you'd expect they would and should. Sometimes nerves just atrophy from lack of what they need from the vanishing blood supply. Sometimes you can feel your nerves complaining with pinpricks of pain, lots of pinpricks (neuropathy pain). Heat can help some to get the circulation going, including a hot shower.
An orthopedic specialist showed me an xray of my feet a long time ago, and there were a zillion white lines everywhere in the tiny blood vessels of my toes there: calcium (arteriosclerosis). I'm too well aware that that blood vessel clogging process doesn't just go on in the feet, but everywhere else too, like the heart and brain. Anything you can figure out to help the circulation ought to help some, like your hot water soaking idea, but also anything else you can figure out to do for circulation, like exercise to whatever extent you're able and maybe taking some supplements too.
==NEUROPATHY SUPPLEMENTS==
If you ever do decide you're going to get started trying supplements, then here are some things that might help with neuropathy:
Acetyl L-Carnitine
Alpha Lipoic Acid
Gotu Kola
I haven't been into supplements very long, and I'm no great authority here. But something I've added in recently is definitely helping my circulation and edema problems, and I'm guessing it's the ALA, because that's the one I've been on the longest (but still only about a month). I'm not going slowly on trying to make changes, though I do research carefully, and look things up in my supplements book by two MD's, Solve It With Supplements (by Robert Schulman and Carolyn Dean).
==PRESCRIPTION WORRIES==
B12 sounds like a pretty good guess too.
I don't blame you for worrying. My experience has been that usually the medicines that the doctors prescribe start out working for me as they work for others, and then I come down with a reaction problem or terrible side effects. My advice to anyone who reacts to things is to not leap into a quick acceptance to whatever meds the doctor preposes as your big solution--that prescriptions also stand a good chance of making things worse, or LOTS worse in the long run.
I've tried every major type of blood pressure medication and I've had to take myself off them all, eventually. With my last ACE inhibitor, I was well into stroke territory in the systolic measurement--245 systolic and above--as long as I stayed on the doctor's prescription. The more I took, the more I needed, and he kept upping the prescription to 1.5 times the normal upper amount, and it kept getting worse and worse until I took myself off the drug, the same as I'd had to do with my other BP drugs. Off everything now other than some supplements, I'm not really fixed-- but the systolic BP came down by at least 70 points, simply from my decision to drop all the prescribed medications that were supposed to make things better, not worse.
==VITAMIN D==
If you do have a problem with reacting to sun exposure (from Lupus), then consider also that your likely tendency to want to avoid mid-day sun may be contributing to a Vitamin D deficiency. (I have a severe problem with direct sunlight, with hives and a horrible, horrible headache... and ended up with a 25-D test of 8.7. I found that out accidentally; my doctor didn't even mention it to me.) Especially with the health problems you're trying to overcome, then shoot for a 25-D reading of between 50 and 80, not 30, if you discover you're Vitamin D deficient. I've seen at least one person mention that liquid Vitamin D worked more reliably for absorption for them than a capsule did, so I've ordered that one.
By the way, besides making you feel so awful you can scarcely function at all, a Vitamin D deficiency can cause depression, all by itself, without any additional problems added into the mix. Take a look at this webpage, and scroll to the various patients' comments farther on down the page to get an idea how it feels to be very low on Vitamin D. Some of those comments might ring a bell with you.
http://www.drfranklipman.com/symptoms-d ... deficiency
==DIABETES MAYBE? TEST 1==
I would think it wouldn't hurt anything to pretend that you have diabetes and to do something on your own to confirm or reject that notion.
What I'd suggest: plan ahead to eat a high carbohydrate meal for lunch or supper one day. Make the meal contain as close to zero protein as you can get it (including no good vegetable sources of protein either, like beans or nuts). Avoid fats, oils, or anything that might contain fat. Two hours after starting your meal, arrive at a drugstore that does various kinds of testing (like maybe a larger Walgreen's, if they have them where you live), and get a reading for your blood sugar. If it's over 140, then you are likely either diabetic or prediabetic, with the higher the value, the more confirmed the diagnosis.
A suggested carbohydrate testing meal: a large mainstay serving of rice (any kind), with some (or lots) of cooked carrots. You could easily add in some some sweet green peas too, and if you want to pile on the veggies, some butternut squash too maybe. Add a nice sized bowl of applesauce for dessert (either sweetened or unsweetened) with maybe some raisins sprinkled on top. The main thing would be to have plenty of rice with little of anything that could stretch out its impact, like fats.
==AVOID HIGH OXALATE FOODS==
If these particular foods don't exactly agree with you, then look up on the internet the carb counts for the various foods you can eat and figure out a different high carb meal. White potatoes have a good many carbs, but I'd suggest avoiding them for the most part (though I'm addicted to potatoes and I know the willpower you'll need there). White potatoes are members of the nightshade family (with the nightshade toxicity taxing the body's mechanism for ridding itself of more toxins) and also a food choice that is relatively higher than average for oxalate content. Oxalates are also toxins, and again, it's extra work for the body to have to deal with them--work your body might be ill prepared for with your other problems. And while sweet potatoes aren't nightshades, they are especially high in oxalates. All vegetables, fruits, nuts, and grains have oxalate content to some degree or the other--nature's toxic trick to keep the insects at bay. Your own trick is in mainly choosing the portion of your non-animal foods diet to be generally those with lower oxalate values, as much as seems practical to you. Some people have found very low-oxalate diets to help with all kinds of different problems, including yeast infections and even autism. For an oxalate content food list, see:
http://www.ohf.org/docs/Oxalate2008.pdf
==DIABETES MAYBE? TEST 2==
Well, back to your diabetes testing. If you're out of the woods on the first test, hurrah! Next, you want to know whether you still have a situation that might mean you're prediabetic and that you ought still to manage things from a diabetes perspective. So you're trying to find out whether you're hypoglycemic or not. Hypoglycemia is not a part of the usual definition of diabetes, but if you're hypoglycemic, your body isn't controlling glucose properly, and it's a part of a continuum of diabetic problems with blood sugar control. The first step in the direction of diabetes usually shows up as hypoglycemia.
So you still do want to do a morning fasting glucose test for yourself--test 2. Go back to Walgreen's (or wherever) and get the test done again in the morning before breakfast. If results fall between 70 and 100, you're home free from worrying about diabetes for a long time, in every respect that I know of. The first time I had this done with my doctor, the nurse called with the results, and told me everything was "normal." I inquired as to the number, and she reported "56." Yes, that's normal--in Fairyland. (I shouldn't even have been out driving with a glucose level at 56; I can get some really dizzy shaky problems at that level of hypoglycemia....) More importantly, perhaps, the doctor's idea of a diabetes discovery test did nothing to discover or reject the diabetes I thought I had--that is, to disprove that I had no problems with highly elevated blood sugars for a long time after eating--the main question had in wanting testing for diabetes.
If you don't have a drugstore there that does testing, then buy one of the blood sugar meters that's free/almost free after the rebate. Any kind will do. The monitors come with a small sample of the proper test strips, so you shouldn't have to buy any of those to get the two tests done.
I suggest you do handle this testing on your own and avoid going to your doctor for figuring things out. If you find you have a hypoglycemic problem, start reading up on things to do to even out your blood sugar levels, like having many more (tiny) meals without too many carbs in any one meal.
==AVOID GLUCOPHAGE==
If you find that you're diabetic from the first test's results, you'll of course want to see an endocrinologist. (Don't panic; you're already living with worse. You can get along fairly well as a diabetic, after some adjusting.)
If you're diabetic, I suggest that you do NOT take the oral drug your endocrinologist is almost surely going to recommend: Glucophage. That drug is terribly hard on the kidneys if taken daily over an extended period of time, terribly hard.
==COMMON DIABETIC SYMPTOMS, YEAST INFECTIONS==
If you end up finding you have diabetes... I've forgotten now the physiology involved, but diabetics tend to have problems with dehydration, and it's important to drink plenty of water, even though it's less effective for the problem than you might expect. You might also consider adding a pinch of Celtic Sea Salt to your jug of water to help with balancing minerals out too. Or eat a tiny pinch of sea salt along with drinking a bunch of water when the spasms are really bad. That actually does help me some.
Another common problem for diabetics is with staying awake longer than about 20 minutes after finishing up a normal-sized or larger meal. You can yo-yo from being too sleepy to stay awake to frantically starving.
By the way, persistant yeast infections are a little more common for diabetics than for most: http://www.thevbook.com/chapter10.html (I highly recommend this book.)
==MENTAL HEALTH SUPPLEMENTS==
For anxiety, Passion Flower helps.
If you need help with relaxing enough/living through the pain enough to go to sleep, try Valerian at about half the manufacturer recommended dosage.
I've recently started using NAC, which also has some potential mental health benefits. The version of NAC that I've tried: NAC-N-Acetyl Cysteine (600 mg) with Molybdenum (50 mcg as amino acid chelate) & Selenium (25 mcg as L-Selenomethionine). According to my reading, none of these supplements have a habit-forming worry attached to them.
If you're in the US, NAC is sold over the counter/internet here, though you might need a prescription in other places. I'm taking it once per day for really severe mucous problems. But it has the potential for a huge number of other benefits, as well, including some help with depression. I think I might have seen some general mental outlook benefits here? (Though I've long been overly emotional and that hasn't changed. I know exactly where John Boehner is coming from with his little crying issue. I want to tell him to go get checked for diabetes every time I see him sobbing on television!)
Take NAC with food to avoid a digestive upset. My supplements book says these are typical doses: 600 to 1500 mg three times per day. NAC is actually described in my book as (potentially) helping the kidneys and many other things, including Raynaud's Disease. (But more research is called for.) Perhaps that preliminary Raynaud's research means that it also might help some with inflammation issues generally? (Crossing my fingers....)
Very best of luck to you, Jennifer. I'll be wishing lots of health improvements ahead in your future.
I'm new here too and seeing lots of interesting posts to comment on. I started on a relatively short reply to one of your posts, but then something you said made me think that I ought to look back through your stuff for some other things, and that got me to look at more posts. So this is just one post responding to several of yours. I'm sorry for the length, but at least this is the last from me for a long, long while. I've too much reading to do with a stack of 9 books (no, 10--another one just arrived), mostly health-related books that I've bought but not had time to read yet! That doesn't even count the various books for Adobe CS5 that I fully intend to actually study--one of these days.
I ordered Wayne's book a couple of days ago too, though in doing it somehow I missed seeing the link to Amazon at the top of the page here. I think I have trained myself to ignore things like ad boxes that usually have nothing at all to do with a webpage's content. I didn't even see or read that box until I read someone's post mentioning it after I'd placed my order. Sometimes I am just totally out of it. At the moment I'm totally out of it trying at a distance to diagnose your problems, all in one amazingly long piece of writing. Read this at bedtime when having difficulty getting to sleep.
JenniferS wrote:
I know many of you have various autoimmune stuff, and I'd love to hear your experiences, what led to diagnosis, and how you've gained improved health.
I have always have issues with various things, but lately, they've gotten far worse and more frequent and I'm not sure what is MC related, what is due to malabsorption, and what might be a sign of something else.
I read your fairly recent post about feeling famished. And instantly I thought: diabetes. (That's a natural for me, because I have that problem. But take my thoughts with a grain of salt: if I knew more about the other possibilities, I'd likely be instantly thinking it was those other possibilities too.) In diabetes, you're starved because, indeed, at the cellular level your cells are screaming out for glucose... which your brain translates into screaming to take in more food.
==DIZZINESS==
JenniferS wrote:
I shared in previous threads my frequent struggle with vertigo. This has become more frequent, but is not new. I had this periodically prior to mc, went to the dr, she said I probably had an inner ear virus, told me to take motion sickness pills, and sent me home.
Dehydration might be one possibility. You might want to have some simple testing done in which dehydration might show up.
==MUSCLE SENSATIONS AND SPASMS==
JenniferS wrote:
Then, maybe once every three to four months I'd get weird muscle sensations like my muscles were cramping and spasming, although they weren't. I can't quite describe it, but it's on the verge of painful, and it feels like I need to relax my muscles (arms and legs), but they refuse.
That's very, very familiar here, except that I'd add that it's painful and not on the verge of painful and for me. It happens daily, especially at night. It feels just as if there's a pinched nerve getting hit somewhere and getting ready to explode. It's painful enough that it keeps me up for hours during the night, most every night, and during the day when I try to sleep too. Quite often my legs will involuntarily jerk out from my body from the pinch of that pain. And it quite often happens just at the point when I'm finally drifting off to sleep, which doesn't happen all that easily anyway when I'm sitting there, feeling anxious and worried that those horrible pains are going to strike at any moment. I rarely am able to sleep more than an hour and a half at a stretch, and when I wake up, I feel really bad, especially with stabbing burning pains to my hips and where I sit. I've other problems contributing to the pain, but that one alone would be enough to make sleep impossible most days. And your body can't recover from much of anything if you can't get good quality sleep.
I also have had actual spasm problems--daily problems--with muscles going into severe spasms all over my body. The very worst incidences were connected to taking Lipitor, which fortunately I finally decided to take myself off of. The problem with Lipitor for me was myopathy, a known problem with that drug, but a fact I was unaware of at the time I started on it. Because I was in such bad shape and getting worse all the time--I'd wake up screaming uncontrollably from the most severe of muscle spasms all over my body. Even though I'd described what were obviously life-threatening muscle spasm problems to my doctor--the heart is a muscle too!--he kept on with the prescription typically issued for cholesterol problems that I guess he learned to do automatically in med school. He kept me on the drug for far, far too long--until I smartened up on my own. Or maybe he didn't know or remember the warnings attached to its use, one or the other.
But I still do have some spasm problems; they're just not remotely in the ballpark to what I once suffered from with Lipitor. With Lipitor, it felt as if I were on my deathbed a time or two with spasms that made childbirth seem like a picnic. I'm figuring it's the dehydration causing the spasms now, though, when I get them, since when I skip my diuretics it does noticeably help a great deal with the tendency to have a muscle spasm or feel as if a spasm might be imminent.
==MAGNESIUM==
JenniferS wrote:
Normally, this happens in the evening when I'm tired. Once I thought maybe I had a magnesium deficiency and took a bunch of almonds.
Sounds like a good possibility. Read Carolyn Dean's "The Magnesium Miracle" to find out more. Lots of people--the majority of people--would benefit from taking a magnesium supplement daily. You might think that you're getting enough in your daily multiple vitamin (if you're taking one) but no, that supplement probably contains the magnesium stearate form of magnesium that the body can absorb only at about a 5% rate. Magnesium citrate is a good inexpensive magnesium supplement and the body can absorb about half of the magnesium there. Assuming you're not in renal failure, you could get started taking magnesium now and I'd bet you'd see some improvements.
==JOINT PAIN==
JenniferS wrote:
And I've shared how I have and have had joint pain [...] I experienced extreme weakness
Me too. A general body inflammation reaction can account for all of that, I think. In my case the inflammation led to psoriasis, arthritis, fibromyalgia, and potentially the kind of kidney disease with psoriasis involvement.
At first, shots of cortisone used to help my worst knee, but then the shots stopped working. I wish I'd done some internet work on my own then to find other ways of helping, but I figured the orthopedic doctor would have come up with it if there were anything else that might work. (Synvisc--turkey waddle--was tried and didn't work for me.) Other things I wished I'd had the nerve to try then when it might have prevented crippling damage: some supplements with a good reputation for helping generally with inflammation or arthritis:
Ashwagandha
MSM, Methylsulfonylmethane
Bromelain
Quercitin
N-A-G, N-Acetyl Glucosamine
Osteobiflex
At this point, I really do believe that diet changes might have worked to save me from becoming crippled, if only I'd known early on to try drastic adjustments away from sensitive food selections to reduce inflammation. I'm glad that you're working on your problems now, and maybe they won't get any worse.
==RAYNAUD'S==
JenniferS wrote:
I also have raynaud's, and, well, atrophy that I will not expand on ;) but which the person who dx it said she believed it to be autoimmune related.
I have at times suspected Raynaud's here too. I've found that some cozy loose mittens containing a gel that can be microwaved will hold the heat for a long time and that it does help with the feeling of freezing in the hands. http://www.warmmeups.com
==CIRCULATORY PROBLEMS & NERVE DAMAGE==
JenniferS wrote:
And my arms feel like they often go limp and my hands and feet get sort of numb.
That can be a sign of diabetes, though no doubt it can be a sign of a zillion other things too. The problem for diabetics is that the peripheral circulation is especially poor, and this also affects the blood supply to the nerves in the periphery, so the nerves sometimes don't function as you'd expect they would and should. Sometimes nerves just atrophy from lack of what they need from the vanishing blood supply. Sometimes you can feel your nerves complaining with pinpricks of pain, lots of pinpricks (neuropathy pain). Heat can help some to get the circulation going, including a hot shower.
An orthopedic specialist showed me an xray of my feet a long time ago, and there were a zillion white lines everywhere in the tiny blood vessels of my toes there: calcium (arteriosclerosis). I'm too well aware that that blood vessel clogging process doesn't just go on in the feet, but everywhere else too, like the heart and brain. Anything you can figure out to help the circulation ought to help some, like your hot water soaking idea, but also anything else you can figure out to do for circulation, like exercise to whatever extent you're able and maybe taking some supplements too.
==NEUROPATHY SUPPLEMENTS==
If you ever do decide you're going to get started trying supplements, then here are some things that might help with neuropathy:
Acetyl L-Carnitine
Alpha Lipoic Acid
Gotu Kola
I haven't been into supplements very long, and I'm no great authority here. But something I've added in recently is definitely helping my circulation and edema problems, and I'm guessing it's the ALA, because that's the one I've been on the longest (but still only about a month). I'm not going slowly on trying to make changes, though I do research carefully, and look things up in my supplements book by two MD's, Solve It With Supplements (by Robert Schulman and Carolyn Dean).
==PRESCRIPTION WORRIES==
JenniferS wrote:
As I mentioned, this is getting progressively worse--more frequent and more intense--and I'm trying to find a solution. I did get a bunch of lab work done, and they are testing me for lupus, which I don't believe I have, and vit. B12 def (which I think is possible) but I do wonder if something is going on. I'm a bit worried the drs. will continue to smile, nod, and send me off with a "pill" as this has been the practice so far, and as I'm sure many of you experienced, it took a while for them to dx my lc.
B12 sounds like a pretty good guess too.
I don't blame you for worrying. My experience has been that usually the medicines that the doctors prescribe start out working for me as they work for others, and then I come down with a reaction problem or terrible side effects. My advice to anyone who reacts to things is to not leap into a quick acceptance to whatever meds the doctor preposes as your big solution--that prescriptions also stand a good chance of making things worse, or LOTS worse in the long run.
I've tried every major type of blood pressure medication and I've had to take myself off them all, eventually. With my last ACE inhibitor, I was well into stroke territory in the systolic measurement--245 systolic and above--as long as I stayed on the doctor's prescription. The more I took, the more I needed, and he kept upping the prescription to 1.5 times the normal upper amount, and it kept getting worse and worse until I took myself off the drug, the same as I'd had to do with my other BP drugs. Off everything now other than some supplements, I'm not really fixed-- but the systolic BP came down by at least 70 points, simply from my decision to drop all the prescribed medications that were supposed to make things better, not worse.
==VITAMIN D==
If you do have a problem with reacting to sun exposure (from Lupus), then consider also that your likely tendency to want to avoid mid-day sun may be contributing to a Vitamin D deficiency. (I have a severe problem with direct sunlight, with hives and a horrible, horrible headache... and ended up with a 25-D test of 8.7. I found that out accidentally; my doctor didn't even mention it to me.) Especially with the health problems you're trying to overcome, then shoot for a 25-D reading of between 50 and 80, not 30, if you discover you're Vitamin D deficient. I've seen at least one person mention that liquid Vitamin D worked more reliably for absorption for them than a capsule did, so I've ordered that one.
By the way, besides making you feel so awful you can scarcely function at all, a Vitamin D deficiency can cause depression, all by itself, without any additional problems added into the mix. Take a look at this webpage, and scroll to the various patients' comments farther on down the page to get an idea how it feels to be very low on Vitamin D. Some of those comments might ring a bell with you.
http://www.drfranklipman.com/symptoms-d ... deficiency
==DIABETES MAYBE? TEST 1==
I would think it wouldn't hurt anything to pretend that you have diabetes and to do something on your own to confirm or reject that notion.
What I'd suggest: plan ahead to eat a high carbohydrate meal for lunch or supper one day. Make the meal contain as close to zero protein as you can get it (including no good vegetable sources of protein either, like beans or nuts). Avoid fats, oils, or anything that might contain fat. Two hours after starting your meal, arrive at a drugstore that does various kinds of testing (like maybe a larger Walgreen's, if they have them where you live), and get a reading for your blood sugar. If it's over 140, then you are likely either diabetic or prediabetic, with the higher the value, the more confirmed the diagnosis.
A suggested carbohydrate testing meal: a large mainstay serving of rice (any kind), with some (or lots) of cooked carrots. You could easily add in some some sweet green peas too, and if you want to pile on the veggies, some butternut squash too maybe. Add a nice sized bowl of applesauce for dessert (either sweetened or unsweetened) with maybe some raisins sprinkled on top. The main thing would be to have plenty of rice with little of anything that could stretch out its impact, like fats.
==AVOID HIGH OXALATE FOODS==
If these particular foods don't exactly agree with you, then look up on the internet the carb counts for the various foods you can eat and figure out a different high carb meal. White potatoes have a good many carbs, but I'd suggest avoiding them for the most part (though I'm addicted to potatoes and I know the willpower you'll need there). White potatoes are members of the nightshade family (with the nightshade toxicity taxing the body's mechanism for ridding itself of more toxins) and also a food choice that is relatively higher than average for oxalate content. Oxalates are also toxins, and again, it's extra work for the body to have to deal with them--work your body might be ill prepared for with your other problems. And while sweet potatoes aren't nightshades, they are especially high in oxalates. All vegetables, fruits, nuts, and grains have oxalate content to some degree or the other--nature's toxic trick to keep the insects at bay. Your own trick is in mainly choosing the portion of your non-animal foods diet to be generally those with lower oxalate values, as much as seems practical to you. Some people have found very low-oxalate diets to help with all kinds of different problems, including yeast infections and even autism. For an oxalate content food list, see:
http://www.ohf.org/docs/Oxalate2008.pdf
==DIABETES MAYBE? TEST 2==
Well, back to your diabetes testing. If you're out of the woods on the first test, hurrah! Next, you want to know whether you still have a situation that might mean you're prediabetic and that you ought still to manage things from a diabetes perspective. So you're trying to find out whether you're hypoglycemic or not. Hypoglycemia is not a part of the usual definition of diabetes, but if you're hypoglycemic, your body isn't controlling glucose properly, and it's a part of a continuum of diabetic problems with blood sugar control. The first step in the direction of diabetes usually shows up as hypoglycemia.
So you still do want to do a morning fasting glucose test for yourself--test 2. Go back to Walgreen's (or wherever) and get the test done again in the morning before breakfast. If results fall between 70 and 100, you're home free from worrying about diabetes for a long time, in every respect that I know of. The first time I had this done with my doctor, the nurse called with the results, and told me everything was "normal." I inquired as to the number, and she reported "56." Yes, that's normal--in Fairyland. (I shouldn't even have been out driving with a glucose level at 56; I can get some really dizzy shaky problems at that level of hypoglycemia....) More importantly, perhaps, the doctor's idea of a diabetes discovery test did nothing to discover or reject the diabetes I thought I had--that is, to disprove that I had no problems with highly elevated blood sugars for a long time after eating--the main question had in wanting testing for diabetes.
If you don't have a drugstore there that does testing, then buy one of the blood sugar meters that's free/almost free after the rebate. Any kind will do. The monitors come with a small sample of the proper test strips, so you shouldn't have to buy any of those to get the two tests done.
I suggest you do handle this testing on your own and avoid going to your doctor for figuring things out. If you find you have a hypoglycemic problem, start reading up on things to do to even out your blood sugar levels, like having many more (tiny) meals without too many carbs in any one meal.
==AVOID GLUCOPHAGE==
If you find that you're diabetic from the first test's results, you'll of course want to see an endocrinologist. (Don't panic; you're already living with worse. You can get along fairly well as a diabetic, after some adjusting.)
If you're diabetic, I suggest that you do NOT take the oral drug your endocrinologist is almost surely going to recommend: Glucophage. That drug is terribly hard on the kidneys if taken daily over an extended period of time, terribly hard.
==COMMON DIABETIC SYMPTOMS, YEAST INFECTIONS==
If you end up finding you have diabetes... I've forgotten now the physiology involved, but diabetics tend to have problems with dehydration, and it's important to drink plenty of water, even though it's less effective for the problem than you might expect. You might also consider adding a pinch of Celtic Sea Salt to your jug of water to help with balancing minerals out too. Or eat a tiny pinch of sea salt along with drinking a bunch of water when the spasms are really bad. That actually does help me some.
Another common problem for diabetics is with staying awake longer than about 20 minutes after finishing up a normal-sized or larger meal. You can yo-yo from being too sleepy to stay awake to frantically starving.
By the way, persistant yeast infections are a little more common for diabetics than for most: http://www.thevbook.com/chapter10.html (I highly recommend this book.)
==MENTAL HEALTH SUPPLEMENTS==
For anxiety, Passion Flower helps.
If you need help with relaxing enough/living through the pain enough to go to sleep, try Valerian at about half the manufacturer recommended dosage.
I've recently started using NAC, which also has some potential mental health benefits. The version of NAC that I've tried: NAC-N-Acetyl Cysteine (600 mg) with Molybdenum (50 mcg as amino acid chelate) & Selenium (25 mcg as L-Selenomethionine). According to my reading, none of these supplements have a habit-forming worry attached to them.
If you're in the US, NAC is sold over the counter/internet here, though you might need a prescription in other places. I'm taking it once per day for really severe mucous problems. But it has the potential for a huge number of other benefits, as well, including some help with depression. I think I might have seen some general mental outlook benefits here? (Though I've long been overly emotional and that hasn't changed. I know exactly where John Boehner is coming from with his little crying issue. I want to tell him to go get checked for diabetes every time I see him sobbing on television!)
Take NAC with food to avoid a digestive upset. My supplements book says these are typical doses: 600 to 1500 mg three times per day. NAC is actually described in my book as (potentially) helping the kidneys and many other things, including Raynaud's Disease. (But more research is called for.) Perhaps that preliminary Raynaud's research means that it also might help some with inflammation issues generally? (Crossing my fingers....)
Very best of luck to you, Jennifer. I'll be wishing lots of health improvements ahead in your future.
Best wishes, Mary
Welcome Jennifer. I can see that you have gotten some great advise so far. We all understand how hard it is to accept this dx at first. I know I was in denial about gluten for the first month :) Then I decided to get serious and take control of my life. I listened to all the advise from this forum and fortunately had a doctor who was willing to give me what I asked for ( which was Entocort)
If you have the money to do the tests from Enterolab, they will save you a ton of time figuring out what foods you should avoid. Check out their web site. I had to do it the old fashioned way. While on the drugs ( which is when you want to work on your diet), I eliminated everything but meats, eggs, COOKED veggies, rice and rice products, almond butter, rice Chex with almond milk, sweet potatoes, and apple sauce ( no gluten, no dairy, no soy)...... basically. It took about 6 months to wean completely off the Entocort, but I had enough time to heal . When I was at a very low dose, I started to "test" some foods back in one at a time. I now can eat potatoes, beans, salads, peeled apples, mangos, a little dark chocolate, corn products ( like tortillas), and even can drink some alcohol..... things are pretty good and I only go the the bathroom once a day! You CAN get your life back. Just know that there will be a number of months that will be your "healing months". The more inflammation and damage you have, the longer it might take to get better. The more you work on your diet, the faster your healing.
It sounds like you should be upping your dose of Pepto to eight a day and see if it helps. You can always back down. If it doesn't help along with the diet, you may have to ask your Doctor for Entocort ( Budesonide), but no need to go there yet.
Remember, you can ask anything. We have all ben there and are all here to help each other :)
Leah
If you have the money to do the tests from Enterolab, they will save you a ton of time figuring out what foods you should avoid. Check out their web site. I had to do it the old fashioned way. While on the drugs ( which is when you want to work on your diet), I eliminated everything but meats, eggs, COOKED veggies, rice and rice products, almond butter, rice Chex with almond milk, sweet potatoes, and apple sauce ( no gluten, no dairy, no soy)...... basically. It took about 6 months to wean completely off the Entocort, but I had enough time to heal . When I was at a very low dose, I started to "test" some foods back in one at a time. I now can eat potatoes, beans, salads, peeled apples, mangos, a little dark chocolate, corn products ( like tortillas), and even can drink some alcohol..... things are pretty good and I only go the the bathroom once a day! You CAN get your life back. Just know that there will be a number of months that will be your "healing months". The more inflammation and damage you have, the longer it might take to get better. The more you work on your diet, the faster your healing.
It sounds like you should be upping your dose of Pepto to eight a day and see if it helps. You can always back down. If it doesn't help along with the diet, you may have to ask your Doctor for Entocort ( Budesonide), but no need to go there yet.
Remember, you can ask anything. We have all ben there and are all here to help each other :)
Leah