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About sneezydiva

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  1. Hi. I have not been on the forums in a long time, but I still read the newsletters, and occasionally click on the selected topics. Anyway, I logged in to tell you that you should be tested for Lyme disease. The suddenness of your ill health and original rash makes me highly suspect it. Most of us here had trouble remembering a time when we felt well before diagnosis. The racing heart rate at rest and anxiety and joint pain you described are symptoms, and many people get atypical rashes that spread to different parts of their body, not the classic "bull's eye" rash all the websites say to look for. It may very well be gluten, but if I were you, get Lyme ruled out.
  2. Magnesium. In the book "The Magnesium Miracle" it lays out very convincing evidence that anxiety can be caused by magnesium deficiency. Plus, magnesium will help counter-act the constipation from your medicine.
  3. I really wanted a diagnosis, not so much to convince myself, but to convince others. I was at a point where I KNEW in my gut (no pun intended) I had Celiac disease. I knew from internet research the chances of testing false-negative on the blood test were high, and I resolved to go on the diet regardless. Well, I did test negative to Celiac, but I also tested positive to a wheat allergy. Plus,the allergist disagreed with my GI that the Celiac test was negative, he said it was inconclusive, and told me to avoid all gluten, not just wheat. I am a believer that most gluten-intolerance is Celiac that hasn't progressed far enough to be picked up by current testing methods. I had already been dabbling with the diet before (which probably messed up the blood test), and got a lot of eye rolling and skepticism from family and friends. All that stopped when the doctor bestowed the wheat allergy diagnosis on me. People who accused me of being lazy in the past have apologized to me now that they understand the reason and have seen my dramatic recovery. That wouldn't have happened without a diagnosis. So I think it is always worth it to at least try to get a diagnosis. But if results are negative, don't let that stop you from doing what you know must be done. Another reason to try is the more people who are diagnosed, the more the food industry will have to adapt, and that will make life easier on everyone, whether you are "officially" diagnosed or self-diagnosed.
  4. I feel for you. I have a hard time speaking up too. Part of it is an irrational fear that I will be perceived as being a nitpicky customer. I think we've all had an experience dining with someone who complains to the waitstaff about anythin and everything, too much ice in the water, soup not hot enough, etc... But after a year and half of doing this, I've realized waitstaff take my medical condition seriously, and they know you're not just being "picky" when you send back a salad they accidentally put croutons on. At first, I think you will find it easier to eat at restaurants that offer a gluten-free menu. Staff at those restaurants usually understand the importance of it, even of they don't understand all the ins-and-outs of celiac disease. I also find very upscale restaurants are better about it too. They have real chefs who often have been trained about preparing food for various allergies, and they take the requests in stride.
  5. This is my biggest frustration for not having an official celiac diagnosis. I KNOW my grandmother had it, and I'm positive my mom does too. I figured it out myself, after realizing all my symptoms felt better on Phase 1 of South Beach Diet. But the GI said my blood test was negative, despite 2 of the 4 values being the absolute highest they could be and still technically be negative. The GI's PA believed me and was sympathetic, and suggested food allergy testing. Went to the allergist/immunologist at a prestigious miliary hospital. He was arrogant and dismissive of my story, but b/c my husband accompanied me to the consultation, he strong-armed the doctor to do the food allergy testing. He was shocked when wheat was positive. He then changed his tune, and scrutinized the celiac blood test, and told me "It would be wise for you to avoid all gluten." So officially, I have "just" a wheat allergy, but I'm sure if I had suffered a few more years, I would've eventually tested positive for celiac. But at least the allergy diagnosis has been very helpful getting family to accept my gluten-free lifestyle. After a year and a half gluten-free, I've never felt better in my life.
  6. If you have an actual celiac diagnosis from a GI doctor, I would have him talk to your ex-wife. After all, they recommend all immediate relatives get tested right? Don't under estimate the power of an authority figure telling your wife what she should do.
  7. I'm so sorry your husband isn't being supportive, I know that must be hard. My husband was very supportive, but it was still hard for him, not so much eating at home, he'll eat whatever I make, but it curtailed our eating out, and he likes to go out. One thing we did was start taking ballroom dance lessons. It gets us out of the house and socializing, but it doesn't revolve around food.
  8. Congratulations! I also discovered I was gluten intolerant by going on a low-carb diet, specifically South Beach. The first time, I thought my feeling great was a coincidence, but after gaining the weight back, and going on it a second time, the light bulb went off. I've been offically gluten free for 1 year, 5 months. I've had lots of great benefits, some I expected, some I didn't -Pollen allergies have significantly improved. I'm not off my meds yet, but I can actually go outside now, as long as I take my zyrtec. -Need less sleep. I went from sleeping 10-12 to a more normal 7-9, thought truthfully, I function best at 9 -Build muscle easier. I could never build muscle before. My core is stronger, and my waist is smaller than it has ever been, even though I weigh more than I did as a teen. -Dark circles under my eyes are gone -Hair growth--I had the start of a widow's peak, but now my hairline is back to how it was when I was younger -More energy I can now hold a job AND keep up with housework, rather than choosing one or the other. And this one will probably make people think I'm crazy, but I swear it's true. I used to have really, really flat feet, and now I have nice arches. I first noticed it last August. I was watching T.V barefooted, and looking at my feet, and I was literally "Why is my foot so curved when I'm not pointing my toes?", and I realized, "OMG that's my arch!" My digestive symptoms aren't 100% normal yet, but that's okay. I am able to fully function in life!
  9. Another thing I keep track of in my diary is whether all my meals for the day were prepared at home. Not only do I record that th particular day was all homemade, but I also record streaks such as "4 days in a row eating meals from home" My house is gluten-free, so if I do get symptoms, and I look back over the last couple of days, I can immediately zero in on the day I ate out as the culprit. If everything was prepared at home, you know to either check up on certain processed foods, or you can be confident you didn't get any gluten, and your body is still just "working out the kinks"
  10. I actually have a confirmed wheat allergy found by a skin test. Though in my gut (no pun intended) I think it was more than that. Two of my celiac blood values were at the highest value to be considered normal, and I can not tolerate any gluten. Though there is a difference between allergy and celiac, functionally, the solution is the same--gluten free diet. Yes, techically you can have barley and rye if you only have a wheat allergy, but wheat is the most ubiquitous anyway. I can tell you it IS nice to have some type of diagnosis. If the nutritionist's diagnosis is a part of your record, and you're not having any symptoms, I wouldn't worry about the endoscopy. If you are having symptoms, you may want the endoscopy to make sure nothing else is wrong. If you don't have any formal diagnosis, even an allergy diagnosis makes life a bit easier as far as dealing with other people, including doctors. I was at the point where I knew I was going to eat gluten-free regardless of the allergy and celiac tests. But my own mother takes things much more seriously now that I have the allergy diagnosis. And btw, the allergist told me point blank, "It would be wise for you to avoid ALL gluten, not jsut wheat."
  11. It sounds like he's doing his best to be supportive, but that you've found a few things you KNOW are safe, and are now stuck in a rut. Make it an adventure to discover new things you can eat together. DH and I had a great time over Lent making a new pasta dish every Friday. We love Bionaturae gluten-free pasta, DH thinks it is indistinguishable from wheat. Even if you make seperate dishes, encourage him to try a bite of yours. If this relationship is going to go the distance, it will be much easier if you can find recipes that you can eat and you both can enjoy.
  12. We used my gluten issues as an excuse to get all new pots and pans. We converted from a non-stick to stainless steel because they are easier to clean. We are now a gluten-free house. But in the early days, I washed everything in the dishwasher, because dishwasher detergent has food dissolving enzymes, so I felt confident things got completely clean. I never had any problems as far as I know. I could always trace any glutening to a specific food I ate, or an unfortunate kitchen counter CC goof-up.
  13. I find it disturbing she has a son with a peanut allergy and doesn't get it. Do you think there is any jealousy involved? I hate to say it, but some people love to be fussed over, and your sister-in-law may not like it that her son is not the only one who needs special consideration now. I'm seeing this with my own sister-in-law. She doesn't like the "extra attention" my MIL gives me now. I agree with others, tell her it is that woman's choice, and she is making a choice that goes against every gastroenterologist's adivce. Tell her YOUR doctor said to avoid ALL gluten, and is periodically retesting you. And if your bloodwork does show you're getting glutened, you'll have to get another endoscopy. Regardless of your doctor's game plan, that is what I would tell her because people take those kinds of medical procedures very seriously. .
  14. I think a huge part of it is curiousity, especially if you've been gluten-free for awhile, and your health has obviously improved. It makes other people ask themselves if they could do what you're doing, and whether it would make them feel better. And pointing out other foods you can eat, it's more of a question for themselves, "Is that allowed?" I'm starting to see this with my inlaws, who have always been very supportive because my MIL has migraines triggered by certain foods. I think my MIL is on the cusp of trying to go gluten-free for herself, which IMHO, she should. I believe she does have gluten issues and possible celiac.
  15. I know EXACTLY what you're talking about. It is very hard to distinguish things at times, especially if dairy and/or high fiber foods aren't agreeing with your right now. Miles2go is right though, after a while, you will be better able to distinguish between true glutenings versus a random "tummy rumbling." Also when keeping the diary, I look over things carefully, and if I prepared it myself, and I'm positive it is gluten-free, I know it was just a fluke. If it appeared gluten-free, but is a processed food, I carefully reexamine the ingredients and do a little internet searching. If other people seem to also have trouble with the food, I eliminate it from my diet. If it still appears safe, I wait a couple of weeks before trying it again. More often than not, it turned out to be okay. But the easiest way to keep things straight is to use whole foods to prepare your meals. and as little processed foods as possible. That way there are only a couple likely culprits.
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