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Everything posted by rumbles

  1. Had the same kind of issue a couple of years ago when I was in a critical medical situation (cancer). Since I couldn't make one doctor's office provide the results to another as quickly as needed, and didn't have the time or strength to go doctor-to-doctor to pick up and deliver test results, I found a way to bypass the problem. I wrote a letter to each of my test providers (labs, x-ray, etc.) instructing them that from that point forward, all test results were to be sent to the following doctors, and listed each doctor's information (including phone and fax). When I went to my next test, I took that letter, plus business cards for each of the doctors, and gave it to the testing facility, and made sure that they understood the instructions and were noting my records accordingly. On each follow up visit, I also remind them that they have standing instructions from me to provide the test results to multiple doctors. I advised each doctor personally that I required this, and that they were to let me know if they had a problem with it, as if they did, it would mean that I would need to find another doctor. Since doing this, I've never had a problem with one doctor not having the other doctor's test results, and I've achieved a higher level of respect from my doctors, - they know that I am an active participant in what happens to me, and that ultimately, I am the decision maker. Cancer teaches many things, - the first is that you are the primary stakeholder and that you have to step up and take control of directing traffic and decision making. I learned that it was my medical team, and that I had to take the lead position, as the outcome would effect me a heck of a lot more than it would effect any other member of my team.
  2. Compromised is not synonymous with deficient. Generally, there are three types of immune system compromises: allergic disorders, autoimmune diseases and immunodeficiency diseases. Because of their effect on the immune system, vitamin deficiencies, chronic stress and lack of adequate/restful sleep can lead to an immune system compromise. I'm not trying to scare anyone, - quite the opposite: I'm saying that we all need to make sure that we stay vigilant on our diet and nutrition, get plenty of rest, exercise, practice frequent hand washing and try to stay away from anyone with flu symptoms, - and probably avoid large crowds where possible. The same basic common sense that we use when someone comes to work with the excuse that they have too much to do to stay home. From what I'm hearing and reading, statistically, so far it doesn't sound as if this flu is any more lethal than the yearly variety; the numbers that are in the news are the people that went to a doctor or hospital, - there's got to be a whole lot of people that just are riding it out at home with over the counter meds and boxes of tissues. Other than stocking up on some extra supplies and a bit more gluten-free food, and following some common sense practices, I don't think I'd get to concerned at this point.
  3. Smart and well informed is exactly what we need to be! Since going gluten free, I almost never get sick anymore, - in four years I've gotten sick twice, and both times I was when I was trying to recover from accidental glutenings. (Before going gluten-free, I caught whatever went around, - usually two to three times a year.) Best of health, to all of us!
  4. Interesting! - My doctor told me just the opposite, saying that there absolutely is a link between PCOS and celiac. (It took about five months from the point that I went gluten free, but I haven't had cyst problems since them, - I use to get them like clockwork, and sure don't miss them!) If you consider that one of the symptoms of celiac is infertility, then it shouldn't take too much of a leap to understand that gluten can have a direct effect on the ovaries.
  5. Hair loss is often caused by deficiencies (too little vitamin A, B-6, B-12, biotin, inositol, folic acid, magnesium, sulfer, zinc . . . too much vitamin A can also cause hair loss). Your daughter may be taking vitiamins, but is she absorbing them is the question. Like quite a few others that post on this forum, I can't absorb vitamin B-12 by swallowing it, - I have to take it sublingually (pill that dissolves under the tongue), and my body just doesn't seem to be able to store it for any length of time . . . if I miss taking my sublingual B-12 for more than a day, my hair starts falling out (before I knew what was causing it, I had bald patches). She might want to try taking gluten free sublingual B-12 for a few months and see if that helps (if it's B-12 deficiency, it will take time before she'll be able to notice any new growth, but should notice within a few weeks that it's not falling out as much). Thyroid problems can also cause hair loss, and are also common with celiac disease; if she hasn't had her thyroid levels checked (blood test) recently, she probably should.
  6. If baking soda and water calms your heartburn symptoms, you might have something called hypochlorhydria, - fancy word for low stomach acid, and yes, it creates heartburn, and other symptoms of GERD. The body makes less of most things as we age, and for about 60% of the population, stomach acid is no exception. When you drink the baking soda and water, do you burp? An informal test for low stomach acid is as follows: when you first wake up in the morning, before eating or drinking anything, mix 1/4 teaspoon of baking soda in 8 ounces of water and drink it, then for the next five minutes see if you let out a good old fashioned healthy burp (the kind that everyone hears); stop timing after five minutes. If you burped, you have an adequate amount of stomach acid. If you didn't, you don't. If you have low stomach acid, acid blockers (like Pepsid) create a nasty imbalance cycle, as they lower the acid content even lower; the stomach tries to compensate by making more acid, goes a bit overboard, which results in heartburn and GERD symptoms. It's a nasty cycle that plays out over many hours, - usually with the heartburn being worse at night. For some, they'll also experience a rapid heartbeat late at night, usually when laying down. If you have low stomach acid, try Gaviscon, - it's not an acid blocker like the others, it's a foaming agent that creates a foam layer on top of any stomach acid, which prevents it from splashing to areas where it doesn't belong. In addition, if you do have low stomach acid, you will need to take an acid supplement (HCL + Betaine, it's sold in most health food stores, - you might want to start with 250 mg. if you can find it, you'll know over time when if you need to step up to 650 mg. or more; everyone's different, but it's easier to start with a low dose and then work up to find the level that works best for you; just make sure it's gluten free) whenever you eat anything with protein in it (HCL + Betaine starts the protein digestive process, - protein isn't digested properly without it, . . . the undigested protein causes a histadine release/histamine reaction farther down the digestive tract, which causes allergy symptoms . . . if you have low stomach acid, taking the HCL+Betaine supplement may reduce allergy issues). If you google hypochlorhydria, you will find quite a bit of information written about the subject, - doctors are starting to catch on, at least some of them. The following is an article that describes the baking soda and water test that I wrote about above: http://www.drdebe.com/stomachacidtest.html Hope this helps! rumbles.
  7. I did say something, - I'm trying to remind everyone to remember rule number one. As Fiddle-Faddle points out, it's one thing to politely suggest, but it's quite another thing to come across as dismissive and disrespectful. I'm just trying to remind everyone that words can hurt, and to consider the that other person's experience might not be the same as yours. I don't believe that anyone here is intending to be disrespectful, but I do feel that sometimes there could be better words to get a point across, and encourage people to read their posts from the audience's viewpoint before hitting reply.
  8. What gives? Board rule number one calls for respect for each board member. According to Wiki, the definition of respect is esteem for, or a sense of the worth or excellence of, a person . . . . I
  9. Peta, Please ask the doctors to test him for hypochlorhydria (low stomach acid); it has the same symptoms as GERD (including acid reflux), and can cause at least seven of the eight signs that you listed (I wasn't underweight and had those same seven symptoms growning up, plus a few others). rumbles.
  10. Mastiffmommy, My heart is breaking, as I can feel some of the pain that you must be going through in your words, and I wish you the best and happiest of outcomes, quickly! Please be strong, and realize that you are important, and that you will be stronger for all that happens. There will be happier days ahead, and I hope that they approach quickly. In the meantime, embrace your health and inner strength, and know that there are people here that care for you.
  11. QuietMorning, You're in good company. I'd venture to say that a great many of us have family members that don't understand or believe that we have this, and certainly aren't prepared to even consider that they might also have it. Many of us have who have been in a similar position have learned that as long as we've given family members the information, it's their choice what they want to do (or not do) with that information. Those of us that know that we have this condition, we have to take care of ourselves, no matter what other people think or want to believe. It's a hard lesson to learn, as we want to help those that we love, but sometimes they just don't want the help. Please use a little caution around those that refuse to believe that you have this condition, - as there are some folks that may try to prove to you that you don't have this; you will need to be on your guard to make sure that you don't ingest gluten by accident. You're signature indicates that you had a positive endoscopy, - if your biopsy showed flattened villi, you have Celiac, period. If the villi were flattened, it doesn't matter how the blood work came back. Best of health to you. Please don't feel alone, - there are many of us that understand.
  12. I have had occasional reactions to McCormick's spices; because I'm extremely sensitive to cross contamination and blister so easily, I rarely use spices anymore.
  13. I don't react to latex, but blister from any type of adhesive (including hypo-allergenic paper tape). I just sent an email to Band-Aid, - I'll let you know if they respond.
  14. Hi ERR, You might want to see if one of the celiac support groups in your area is going to have a meeting in the near future, and if so, you might want to gently suggest that the two of you go together. Meeting others that are dealing with this and hear what they've been through could help. Some links are pasted below, - look in support, and also for links to other support groups/organizations. ~rumbles. http://www.gluten.net/branches.php http://www.csaceliacs.org/chapters.php http://www.celiaccentral.org/ http://celiac.org/ http://celiacdisease.meetup.com/
  15. TrilliumHunter is right on the money. Most people that believe that they have acid reflux from too much stomach acid actually have it from too little stomach acid; both cause acid reflux. Pharmaceutical companies make a fortune on convincing people that they have too much acid. (Plop-plop, fizz-fizz, oh what a relief it is . . . that your money is now in their bank account.) If you have low stomach acid and you take acid blockers (all except Gaviscon, which is not a blocker, it's a foaming agent that creates a foam barrier on top of the acid so that it doesn't splash up), they cause a further reduction of stomach acid over time, making the problem worse. Most doctors don't bother to test the amounts stomach acid - they take the pharmaceutical companies word and prescribe acid blockers, then when that brand stops working and the patient complains, they switch to another brand, and then another, and . . . . There is a simple home test to determine if you have low stomach acid. First thing in the morning, before you eat or drink anything, mix 1/4 teaspoon of baking soda in a glass of water, and drink it. For the first five minutes (only - stop counting after five minutes), see whether you let out a healthy burp. If you let out a healthy burp, you have adequate stomach acid; if you don't (don't bother counting those tiny burps that no one can hear), you have low stomach acid, and will need to take acid supplements (gluten free Betaine HCL; start with low dose 250 mg at first until your system gets use to having acid available again, then work up to 648 mg, increasing the dose until you're back to normal digestion again) when you eat anything with protein in it. If you have low stomach acid (hypochlorhydria) and you take the Betaine HCL supplements, you will probably find that you will have fewer or lesser allergy problems. Without acid in the stomach, the first stages of protein digestion don't take place, so food is entering into the intestines in an unnatural state, which causes a release of histadine, leading to allergy symptoms (usually at least a few hours after eating, which makes it really hard to put the allergies together with food consumption, at least until the acid problem is corrected and the allergy symptoms begin to weaken). The following is a link to an Internet site that describes the stomach acid test that I wrote about above; if you google hypochlorhydria, you will find that many doctors are starting to get on board and recognize that the problem is low stomach acid, - but most of them want to be the ones to diagnose the problem, and want to prescribe, and want to see their patients repeatedly for something that can very easily be determined by the baking soda test and handled by supplements that are available at most health food stores. http://www.drdebe.com/stomachacidtest.html rumbles.
  16. Definitely call the doctor. B12 deficiency can cause some serious and long term issues. You're not a guinea pig, and you shouldn't have to jeopardize your health; if you're symptomatic again, they should be able to test your levels now and see if they've dropped again.
  17. I'm stuck being super sensitive, - I can't go near Amy's products, but normally don't react to Redbridge (unless I go overboard, or have it more than one or two days in a row; for me it's a cross contamination issue, no matter how many times they clean the common machines). It just so happens that for tonight, for the first time since Thanksgiving, I'm going overboard. (The next week or two might be a dog because of it, but it's been a really long day!)
  18. Copied/pasted from Nestle's Carnation Instant Breakfast web site FAQs (hopefully their web site is up to date): http://' target="external nofollow">3. Do CARNATION
  19. Yesterday I only had a few apple slices, on an empty stomach. A few days ago it wasn't on an empty stomach, but I ate a lot of them. Hubby's gluten intolerant, but not anywhere near as reactive as I am, and has been eating the apple slices for weeks, - this could explain why he's had such a vapor problem lately. Last night was the first night in a long time that he didn't snack on them, and last night was the first night in a long time that he wasn't a walking 'perfume factory.'
  20. I found my culprit, - but I'm having a hard time accepting this one. I was feeling great today, had my bounce back and was ready to conquer the world. Then tonight, I had some packaged, sliced apples, - the same kind that I was eating earlier this week, and within minutes, I was back doubled over in pain, reacting all over again. Round two. I just am having a hard time believing that sliced apples have gluten on them, - but they're the only thing that I've eaten since this morning, and there's no doubt that this is my typical gluten reaction.
  21. Check with your doctor to make sure it isn't something serious. I use to have issues with my heart racing when laying down (usually late evening/night), until I found out that I have a problem with low stomach acid and started taking supplements for it.
  22. Num1habsfan, you're not alone, - I'm in the same boat. It's been soooo long since my last glutening, that I didn't recognize the symptoms and thought I had a sci-fi version of the flu, until the blisters showed up. It's pretty bad when you have a gluten free house, and can't trust the food in it.
  23. I would recommend starting with a low dose, - like the 250 mg. HCL/150 mg. pepsin, if possible, start with a one with each meal, and give your body time to adjust. When you start with too high of a dosage, your body lets you know with ~ how do I say this? ~ a sticky output. If your digestive tract has been trying to run without stomach acid, it will need time to get use using it again. After you start taking it, you'll remember what it feels like to digest food normally in the stomach again. You'll know when to increase the dosage, as you'll get the feeling back in your stomach like you're not totally digesting the food again, or will start getting acid reflux issues again (sometimes within minutes of eating, sometimes hours later; some of us find that taking HCL + betaine at that point will stop the reflux, but it's always good to have a foaming agent like Gaviscon on standby, just in case). You'll learn that the dosage will vary depending on what your body needs, depending on what you ate. After your system adjusts to having and using HCL and betaine again, you'll learn to recognize how much you will need based on the type of meal/amount of protein in the meal. Continue to take B12 sublingually or by injection; the HCL with betaine helps some with B12 breakdown, but it doesn't appear to fix the problem.
  24. If this topic doesn't become a new subforum, this thread will eventually drop to page 2, 3, 4 . . ., and wont' be discovered until someone stumbles across it again someday and posts. When I replied to this, it was already at 7th place, - it was at the top yesterday. For those of us that are very sensitive, and for those that are wondering if they are gluten free enough, and those that are still having symptoms after going gluten free, this info is too important to be allowed to fall off the visible radar.
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