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saintmaybe last won the day on February 5 2012

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About saintmaybe

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  1. Certainly have no advice to give on Celiac and chronic pain, but have you been evaluated for other rheumatic diseases, Lyme disease, lupus, spinal arthritis, or Crohn's and ulcerative colitis which can and do present with musculoskeletal complications? Fibromyalgia, while there is a lot of evidence that it's a real disease, is a diagnosis of elimination, rather than inclusion. Wondering if you have all your chronic bases covered. =)
  2. Yeah. One is at home and one has to be administered at the doctors office. I'd take the office administration if the benefits were worth it, but if the two aren't categorically different, I'd prefer at home administration.
  3. Anyone taking these for RA, Spondylitis, JA, or PA? I'm in the process of getting diagnosed with ankylosing spondylitis, and my doctor wants to skip straight to biologics because my case is now progressing quickly and antiinflammatories don't work for me. I'm curious as to what your experiences are, which one you'd recommend. Are the costs, side effects, and frequent infections worth it? I work in retail and am thus exposed to germs all day, so I'm a little concerned about being on immunosuppressants for a long time...
  4. saintmaybe


    Wow, that has a name?! I just looked up pics, and I've had that my whole life and no one has ever said anything to me about it. Thats good to know though, about the b12, both for the tongue and the hair. I am vain, and freak out about every new gray.
  5. saintmaybe


    Sorry to hijack the thread, but what on earth is geographic tongue? I have visions of a tongue with a little suitcase and passport. :-D
  6. saintmaybe

    Continuing / New Symptoms

    Depends on where the pain is. I had lower back and hip pain I at first thought was a direct result of my job working in a garden center. Then I found out my brother has ankylosing spondylitis, and lo and behold so do I. That is a WORST case scenario, and It's doubtful that's your specific issue. It could be the early stages of bursitis or sciatica, generalized inflammation of the joint. I generally eat primal, and it has helped some. It's definitely toned my migraines down to manageable levels. What's clear is that there's something else going on and you should get it checked out.
  7. Some members here have difficulty with airborn flour, which of course can get all over everything. If the restaurant at which you work uses it for baking or for creating a nonstick coating, there may not be much you can do to avoid it. I've always felt bad for gluten intolerantsnin the food industry, because gluten is everywhere. I know I felt terrible when I was working as a Barista in a bakery, but I had other health issues going on and this was long before I had any kind of formal diagnosis for anything.
  8. saintmaybe


    I use FRS chews for b supplementation. I dont know if they're corn free, but they're available at GNC. I think they are, because any kind of corn makes me sick as a dog and i feel fine on these. My hair is growing back quickly, but also curly and dark red, instead of my old blah brown. =)
  9. saintmaybe

    Mouth Ulcers?

    For advice and support, I direct you to a thread from our own members in 2009, who talked about the prescriptions they used in treating their own mouth sores. The drugs mentioned are abreva, and valtrex. Valtrex is an actual antiviral used specifically for herpes simplex and zoster infections, and can be obtained easily from a primary care physician. Apparently a one day treatment is enough to make them vanish. Abreva can be bought over the counter, and was actually the first antiviral approved for over the counter sale in the U.S. I should also note that gluten intolerant/ Celiac persons in this case did get tested for herpes simplex and came back POSITIVE. Given the general population infection rates, just because one person doesn't have it, doesn't mean YOU don't have it. As far as gluten intolerance and herpes simplex: "Because side effects common in gluten intolerance, such as stress, chronic illness and dietary problems can cause cold sore recurrences, you may have an increased risk of developing cold sores if you're gluten intolerant. If you find that certain foods act as trigger foods for cold sores, check to make sure they don't contain hidden gluten. Some sources of gluten you may not have considered include rice syrup, gum bases, malt vinegar, corn starch, baking powder and some soy sauces, fillers and colorings. Read more: " -Seems pretty much like the same advice given to every member, every day on this forum. "Getting frequent cold sores does not necessarily mean that you have gluten intolerance. Cold sores are common; between 45 and 80 percent of people have had at least one outbreak of cold sores, according to the National Institute of Dental and Craniofacial Research. Gluten intolerance is also relatively common, affecting around one in every 133 Americans, according to the National Institute of Diabetes and Digestive and Kidney Diseases. Sores inside your mouth associated with gluten intolerance are more likely to be canker sores than cold sores, although cold sores can occur inside the mouth, usually on the roof of the mouth or on the gums. Read more:" -What this is saying is that you're probably getting a CANKER SORE, not a cold sore. It's also saying that just because you have Celiac disease, you're not immune from getting cold sores (caused by herpes), and that getting contaminated or eating the wrong things are not helping you in that regard. Finally, I'll quote a source from the National Institute of Dental and Craniofacial Research <b>What causes fever blisters?</b> Fever blisters are caused by a contagious virus called herpes simplex. There are two types of herpes simplex virus. Type 1 usually causes oral herpes, or fever blisters. Type 2 usually causes genital herpes. Although both type 1 and type 2 viruses can infect oral tissues, more than 95 percent of recurrent fever blister outbreaks are caused by the type 1 virus. Herpes simplex virus is highly contagious when fever blisters are present, and the virus frequently is spread by kissing. Children often become infected by contact with parents, siblings or other close relatives who have fever blisters. A child can spread the virus by rubbing his or her cold sore and then touching other children. About 10 percent of oral herpes infections in adults result from oral-genital sex with a person who has active genital herpes (type 2). These infections, however, usually do not result in repeat bouts of fever blisters. Most people infected with the type 1 herpes simplex virus became infected before they were 10 years old. The virus usually invades the moist membrane cells of the lips, throat or mouth. In most people, the initial infection causes no symptoms. About 15 percent of patients, however, develop many fluid-filled blisters inside and outside the mouth 3 to 5 days after they are infected with the virus. These may be accompanied by fever, swollen neck glands and general aches. The blisters tend to merge and then collapse. Often a yellowish crust forms over the sores, which usually heal without scarring within 2 weeks. The herpes virus, however, stays in the body. Once a person is infected with oral herpes, the virus remains in a nerve located near the cheekbone. It may stay permanently inactive in this site, or it may occasionally travel down the nerve to the skin surface, causing a recurrence of fever blisters. Recurring blisters usually erupt at the outside edge of the lip or the edge of the nostril, but can also occur on the chin, cheeks, or inside the mouth. The symptoms of recurrent fever blister attacks usually are less severe than those experienced by some people after an initial infection. Recurrences appear to be less frequent after age 35. Many people who have recurring fever blisters feel itching, tingling or burning in the lip 1 to 3 days before the blister appears. What causes a recurrence of fever blisters? Several factors weaken the body's defenses and trigger an outbreak of herpes. These include emotional stress, fever, illness, injury and exposure to sunlight. Many women have recurrences only during menstruation. One study indicates that susceptibility to herpes recurrences is inherited. ********What I got from this********* I really didn't know about the disease transmission in children. Tres interesante! It doesn't specifically discuss gluten exposure in there, but I can easily see how gluten exposure would make one more susceptible to a cold sore outbreak. ************************************** From the same article: "<b>Canker Sores</b> Recurrent canker sores afflict about 20 percent of the general population. The medical term for the sores is aphthous stomatitis. Canker sores are usually found on the movable parts of the mouth such as the tongue or the inside linings of the lips and cheeks. They begin as small oval or round reddish swellings, which usually burst within a day. The ruptured sores are covered by a thin white or yellow membrane and edged by a red halo. Generally, they heal within 2 weeks. Canker sores range in size from an eighth of an inch wide in mild cases to more than an inch wide in severe cases. Severe canker sores may leave scars. Fever is rare, and the sores are rarely associated with other diseases. Usually a person will have only one or a few canker sores at a time. {Canker sores graphic} Most people have their first bout with canker sores between the ages of 10 and 20. Children as young as 2, however, may develop the condition. The frequency of canker sore recurrences varies considerably. Some people have only one or two episodes a year, while others may have a continuous series of canker sores. <b>What causes canker sores?</b> The cause of canker sores is not well understood. More than one cause is likely, even for individual patients. Canker sores do not appear to be caused by viruses or bacteria, although an allergy to a type of bacterium commonly found in the mouth may trigger them in some people. The sores may be an allergic reaction to certain foods. In addition, there is research suggesting that canker sores may be caused by a faulty immune system that uses the body's defenses against disease to attack and destroy the normal cells of the mouth or tongue. British studies show that, in about 20 percent of patients, canker sores are due partly to nutritional deficiencies, especially lack of vitamin B12, folic acid and iron. Similar studies performed in the United States, however, have not confirmed this finding. In a small percentage of patients, canker sores occur with gastrointestinal problems, such as an inability to digest certain cereals. In these patients, canker sores appear to be part of a generalized disorder of the digestive tract. Female sex hormones apparently play a role in causing canker sores. Many women have bouts of the sores only during certain phases of their menstrual cycles. Most women experience improvement or remission of their canker sores during pregnancy. Researchers have used hormone therapy successfully in clinical studies to treat some women. Both emotional stress and injury to the mouth can trigger outbreaks of canker sores, but these factors probably do not cause the disorder." ****************** There are some great pictures in there that can help you determine which type of sore you have. I know I get both canker sores and cold sores, at different times. I did not know cankers were caused by a B12 deficiency. That probably explains why I never got them, once I started supplementing with B vitamins. I also get angular cheilitis, which is another one that is a sign of B vitamin deficiencies. That one causes sores at the corners of your mouth only, and man, it's extremely painful. By far, worst of the three for me. Just for giggles here are the Wikis on cold sores, canker sores, and angular cheilitis. 1) 2) 3) All of these articles have an enormous reading list if you are so inclined, but I prefer to avoid argumentation through jargon. Suffice to say, these three articles probably cover the type of sore you're experiencing. Things to be aware of: 1)Gluten exposure 2)B12 deficiency 3)Zinc deficiency 4)B2 deficiency 5)Iron deficiency anemia Basically, if you're still getting cold or canker sores and are strictly gluten free, then there is something nutritionally deficient in your diet or you are reacting to another food. Eat whole foods, get plenty of rest and relaxation, wear sunscreen especially on the face, and supplement where necessary to make up for dietary shortfalls. Pretty much the same advice given to every new member of the forum.
  10. saintmaybe

    Mouth Ulcers?

    An article on cold sores, gluten intolerance, the immune system and herpes simplex from the Livestrong foundation. summary: gluten intolerance causes a low immune system causes a herpes outbreak in SOME people. In others, it's a topical reaction to gluten. Cold sores are different than canker sores, which are purely the result of a screwed up immune system.
  11. saintmaybe

    Mouth Ulcers?

    That was such a great article! That's exactly what I had, apthous ulcers that were so painful I could barely open my mouth to eat or talk. I haven't had issues with either those or cold sores sine I went gluten free, and I am pretty strict about cc.
  12. saintmaybe

    Mouth Ulcers?

    There have been studies done demonstrating upwards of 70% infection rates. Babies can become infected from their mothers either via the birth canal or from breastfeeding. It's not a stretch to say that someone might be having a flare up of the virus due to gluten exposure, sine the entire immune system is revved from gluten inflammation. The way the virus works is that cells are constantly infected, but only sometimes create a disease process. There is no stigma attached to having herpes simplex.
  13. saintmaybe

    Mouth Ulcers?

    Where are they specifically? The corners of your mouth or on the inside lower lip, or....different sores are indicative of different things, which is why I ask. Corner of mouth usually means general nutritional deficiencies with emphasis on b and d vitamins. Inside the mouth is a flare up of systemic herpes simplex 1, which most people have, and can be triggered by gluten exposure. It can also be vitamin c deficiency.
  14. I don't have dh,but I understand about the lack of care from doctors. I went to a dermatologist and got hit for a huge bill to boot, for them to suggest using clearasil for the chronic acne on my back. Thanks, doctors, the thought had never occurred to me. /sarcasm They then also laughed at me when I asked about the connection to gluten sensitivity. I swore off that ENTIRE HOSPITAL, after that experience. There's plenty of research that makes the connection to all kinds of skin disorders. A) I don't want a doctor/doctors who aren't up to date with current research and B. it's just f***ing rude to laugh at your patients.
  15. I second everything babs said, especially giving yourself time and eating whole foods. You might also have additional food intolerances, which you can discover for yourself, or you can see a naturopath to help test for them. One thing I will add is slow bile, which I thought was a load of hooey until my dad started getting gall bladder attacks. Good digestion is energetically expensive, and can be even more so without the proper bile salts. If you are eating a high fat, high cholesterol diet, which isn't necessarily a bad thing in the context of a diet like primal or Atkins, then you may need bile stimulating herbs or direct bile supplementation. Or a good digestive tea like stomach-ease. A natural foods store will have all of these, or they can be ordered online. Side benefit: extreme regularity. :-D