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About ICWendy

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  1. Hi, Great topic! I have the histamine thing too. From what my alternative practitioner says, it's partly due to my liver not working properly, and he is working on that. I had hepatitis about twenty years ago, and maybe it never recovered. Here are some things that might help people to deal with histamines and inflammation. I am an RN, and intuitively feel that a medication called "gastro-crom", chromolyn sodium, taken with food would help with all of my food issues, but can't get anyone to prescribe it for me. It's considered an "older" medication, and doctors usually like to prescribe the latest and greatest drugs, including the new powerful anti-histamines. The problem for me is that they all cause urinary hesitancy, overly dry eyes etc. So, in the mean-time, I have gotten in the habit of drinking nettle leaf tea with meals at least twice a day. I like it (it kind of tastes like green tea), and it is such a great natural anti-histamine, but doesn't have any of the usual side-effects, and it works quickly (15-20 minutes max.), and lasts for a long time. It also comes in capsules, but with my allergies the back of my throat itches, so it feels soothing to drink the tea. The other thing that helps with inflammation in the gut from gluten reaction or my IC (see below) is to do warm castor-oil packs. You can google it, but it's basically soaking a natural cotton flannel with castor oil (found in the laxative department), and applying it to the skin, cover with an old towel, and a heating pad set on low-medium. Leave it on for 30-60 minutes to start with. It pulls toxins and inflammation out of the tissues into the lymph system, where it is eventually excreted. As your body becomes less toxic, you can tolerate longer periods of having it on. This treatment also brings pain relief, and is an oldie but goodie - also very inexpensive. I also use Benedryl, Claritin, or Hydroxyzine (strong, sedating prescription antihistamine) for very severe reactions. For people unfamiliar with Interstitial Cystitis, which is a chronic inflammation of the bladder lining causing pain, frequency, and urgency, it's kind of a mystery disease, but one thing they do know is that IC patients have very high levels of histamine in their urine, so it makes sense that it's an immune reaction of some kind, and that antihistamines help. Wendy in Portland.
  2. Hi, This is IC Wendy (I have gluten intolerance and Interstitial Cystitis - that 's the IC). Can someone briefly tell me how to respond to a post - I seem to be screwing it up differently every time. I tried to find the answer in the help section, but it was no "help". Thanks in advance. Problems are that my name seems to keep being attached to the post I'm trying to reply to, or that my post is attached at the bottom to the post I'm replying to, and I see that everyone else's is just the reply itself. Wendy
  3. I hope this is the correct way to reply. Meniere's disease comes to mind, as well as something called Migraine Induced Dizziness. It's a migraine phenomenon without actual pain, but the same changes that occur in blood flow cause the dizziness/vertigo, and nausea. Also, I believe that any serious allergy can cause inflammation, and fluid shifts, like blocked sinuses, that can cause symptoms like this. Did you go off your diet, eat a lot of salty food like potato chips, or expose yourself to mold or an outdoor allergen like pollen? Think back and see if it could have been something like that. Did you have any other symptoms like a stuffy nose or difficulty breathing? I hope you figure it out. I have only had this happen once, in response to a new medication I took, and it was extremely unpleasant - mine lasted 24 hours, or until the medication wore off. But, I have a close friend who has symptoms like this chronically, and his journey has been difficult, through many Ear, Nose, and Throat specialists, to finally a diagnosis of severe mold allergy. He moved out of his house, has been having some alternative therapy work, and is starting to feel better. I sincerely hope this was a one-time thing, and you never experience it again. Dealing with celiac's is enough for most of us. If it ever happens again, and it is not in response to diet or a new medication, you could try taking an antihistamine or a decongestant and see if it does anything. Ginger tea is good for nausea, and a homeopathic remedy called "nux vomica" might help too. Wendy in Portland
  4. Hello to everyone on the site, especially those who are struggling with both IC and gluten intolerance. For those of you who don't know what IC is, in short it is "Interstitial Cystitis", a chronic inflammatory process in the bladder lining that is not caused by infection, and it causes symptoms such as pain, frequency, urgency, and sometimes hesitation, or trouble getting a stream of urine started. Many, many people with IC find their symptoms get worse from certain foods, even though there are doctors out there who say that diet does not effect IC. I have had IC fo 10+ years, and have known I had gluten intolerance for 4+ years, but only made the connection when I realized that any gluten, even in tiny amounts, effected all my mucosa. At various times I have had a mouth full of canker sores, ulcers on my tongue, tiny ulcerations and soreness inside my eyelids, and my urologist saw the ulcerations in my bladder during a cystoscopy. When I began following a very strick g.f. diet, all of these issues diminished or resolved. By the way, I initially made the connection to wheat allergy/gluten intolerance due to a persistent skin rash, not the GI symptoms like gas, bloating and diarrhea that are more typical. It was only after a year of eating gluten free when I experimentally reintroduced gluten that my gut reacted. To make a long story short, now others are finding there is a connection between IC and gluten intolerance, or between gluten intolerance and an auto-immune response that for us, seems to focus on the bladder. Here are some things I have done that have truly helped: -a course of long-term antibiotics that were prescribed after I sent a urine sample in for a "broth culture", which is more sensitive at detecting certain type of infections (most doctors don't do it, but United Medical Labs or Fairfax Medical Labs might still do them) -stay strictly on a diet free of gluten, dairy, sugar, alcohol, and caffeine (most other food sensitivities fell away if I kept up with these. -built up my immune system by taking a supplement called "Garden of Life Goatein IG", which is a predigested goat milk protein with goat colostrum, which contains secretory immune globulin, expensive, but worth it. -a type of body-work called "Integrated Manual Therapy", an off-shoot of physical therapy/cranio-sacral therapy -a similar/related type of body-work called "Myo-fascial release", which helped loosen areas of scar tissue and endometriosis, as well as relieving pain and inflammation. After being out of work for several years due to poor sleep and chronic pain (I'm a nurse), I am now working again, and although I still have some issues, I no longer feel like a chonically ill person, unless I go off my diet. Hang in there, Wendy
  5. Hi to everyone, My name is Wendy and I am new to this forum, and not very computer literate. I just wanted to introduce myself, and to say I hope I am doing this right. I have multiple food allergies, but especially gluten and dairy, and a disease that effects the bladder. It is called interstitial cystitis, or IC. I am particularly wondering if any celiacs or wheat-allergic folks have bladder issues, as I think there is a link. Anyone have any thoughts on the subject, or is there a better forum to communicate this topic? Wendy in Portland, Oregon
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