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About margotb

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  1. Hi all, I have Kaiser and am feeling frustrated that the good doctors I have found through my insurance are not really partnering with me to get me healthy. I get the feeling that they just don't know what to do with fatigue and other symptoms of unwellness that are going along with my celiac experience. So I think I want to find a functional medicine doctor or a naturopath who has some experience with celiac. Anyone have any recommendations? I went to the Health Now Medical Clinic in San Jose but honestly they kind of creeped me out and I didn't feel comfortable with them. Thanks! Here is to your health in 2012.
  2. That's a great trip. Thanks. My TSH is in the normal range but I have heard that many functional doctors think that mainstream doctors are not measuring for wellness (just for whether the thyroid is in disease range). My most recent TSH was 1.6 and the normal range on this test is .10 to 5.5 according to my health provider. I have socially met an alternative doctor who said that a lot of women can benefit from thyroid hormone. I wonder how to investigate this more. I will bring it up with my dr. but he might just say that my TSH is normal. I identify more with the symptoms of hypothyroidism than CFS. Yes, it is good to hear from others who are going through similar things. It can feel so overwhelming at times. Yes, it is a mess! I hope to get answers and to feel better and I hope you do too! Love.
  3. Hi everyone, I was diagnosed back in late March 2011 and have been gluten-free since. Overall I have been better and there a but there have been many periods of still feeling very tired and getting frequent colds. The recovery has not been straightforward. Over the last few months I have had more weird symptoms like: -muscle weakness (feeling tired to climb stairs) -wrist pain in my left hand and that wrist falls asleep when sleeping and is numb, and I feel like typing worsens it (bad since I need to type) --the kind of fatigue I had before diagnosis (just wanting to close my eyes and lie down) --exercise intolerance (it seems like a yoga class can wipe me out for days now and that was not the case before) I am back on a Paleo diet now with no sugar or procsesed foods. It seems like cutting out sugar helps but I have not gotten to a full-on elimination diet. My doctor has suggested that it's possible I have CFS or something else. I have to say I am getting totally freaked out that this terrible fatigue, the wrist pain, and other weakness and aches and pains are symptoms of MS or cancer or I don't even know what. I won't let myself google about disease symptoms anymore because I know the anxiety is just making it all worse. Sometimes I don't know how to stop the cycle of anxiety about all this. There is so much to worry about all the time with the food, drugs, personal care products, etc. So then I start worrying about having something else and not believing that I will get better. Or will anyone want to be my romantic partner with all these problems and low energy? I originally intended this post to be just about the symptoms to see if these are familiar for anyone else and I realize that the emotional/anxiety impact is also big on my health. The big uncertainty seems to be: are these celiac symptoms or the symptoms of something else? I don't have an immediate reaction of I get glutened. But I have heard that it can take 3 months for the intestinal damage to heal after a glutening. So is it possible that I have all these weird symptoms for three months after being glutened? Thanks for any input you may have. . .
  4. Hi! I am having anxiety and needing to sleep more. I was tasked by my doctor to root out unsuspecting places where gluten could be hiding. I thought my Ambien equivalent Zolpidem might be where I got glutened. I called and they told me while they do not certify their drugs as gluten-free and have no information about the production facility, no gluten ingredients are used. So is this enough to consider a drug safe? I feel really confused about how to evaluate whether drugs are really gluten-free especially since no law governs this. Would you take it? How do you evaluate drugs? Thanks!
  5. I meet people for lunches often and there are not many places now where I feel safe going to eat. San Francisco only has two totally gluten-free places. As a compromise, lately I have been meeting folks at Whole Foods and eating from the salad bar. I picked from things like spinach, tomatoes, almond slivers, tuna, and shredded carrot today. All naked items. BUT it's a buffet and who knows what is lurking inside. I looked at the feta cheese and croutons were sitting next door and one crouton was in the feta so obviously I did not take any feta. So my question is: Would you eat from a buffet after examining for obvious bits of contamination? It doesn't seem any different in risk level than ordering a salad from a restaurant, and in some ways is less risky because I can see whether there is obvious cross-contamination. But it made me feel nervous nonetheless and wondered how others feel about salad buffets. I will talk to the Whole Foods manager asking them to segregate the croutons and bread. Lordy this all makes me feel OCD but this level of caution is apparently necessary (I am very newly diagnosed and figuring this out.)
  6. Hello everyone. I know that everyone's healing process is different, but I just wanted to ask and get a sense of how I am doing compared to others. I did my biopsy after a six-week gluten challenge March 28. The biopsy revealed moderate to severe intestinal damage. During the last four weeks of my gluten challenge I felt horrible: very low energy, persistent colds (one after the other), muscle aches, and so on. Now it's been almost a month since I have been gluten-free again. I have had about 5 or 6 good days when I felt good energy and the ability to exercise and generally not feel like I have to put in a huge effort to shower, dress, and get out there and participate in life. But then after the good days I have bad days again. A cold comes back. I wake up feeling so exhausted. I am nervous that I am glutening myself unknowingly, but also unsure about whether this is the healing process and maybe it's a step forward, a step back for a while. I guess no one knows for sure whether the ups and downs are the ups and downs of healing or whether it is the result of accidental glutening (since it can be so hard to know about gluten), but curious about your experiences with the healing process. (By contrast, I went off gluten for 2.5 months after my blood test and I think I felt better within about 2-3 weeks and didn't feel quite as many relapses. But maybe this extra gluten challenge damaged me so it will take more time to recover.) Thoughts? Thank you in advance!
  7. Hello! I'm researching to write a blog post about gluten labeling laws around the world. I have found out some information about the US, Europe, and New Zealand and Australia. For example, here: http://glutenfreepassport.com/reference/product-labeling/ I want to know about other countries too. A Brazilian friend sent me a link to the law in Brazil. Amazingly, Brazil passed a law in 1992 and strengthened this law in 2003. In Brazil, a product's packaging must say whether a product contains gluten or not. "All foods that contain gluten, like wheat, oats, barley, malt and rye and/or its derivatives, must obligatorily contain warning indicating that composition." In 2003, Brazil strengthened the law stating that all products may state whether they contain gluten and outlined the procedure for proving a product is gluten-free. How is it possible that Brazil passed this law in 1992 and we still don't have a gluten labeling law in the United States? I can't believe that a product can still say "natural flavorings" in its ingredients and this may or may not contain gluten and we are left to guess. I would like the post to cover as much ground as possible in terms of how countries around the world have dealt with this issue. Which countries have strong gluten labeling laws? In each case where strong laws have been passed, were there strong celiac communities advocating for themselves? Or a government regulatory insider who knew a celiac? And are these laws actually enforced? Can the labels be trusted? Why is it that some countries have come so far while others lag? I'm a newly diagnosed celiac in the US and am highly dissatisfied with the lack of a gluten labeling standard and law and will do what I can to get these instituted asap. This is too confusing and damaging to our health!!! I plan to support this action as much as I can: http://1in133.org/info/# I would appreciate any help you can offer for this research. Thanks!
  8. I appreciate your dilemma! Colombia is wonderful. I was actually in Colombia for three months last year and the celiac symptoms started when I was in Cali and eating pan de queso every day. So much bread, god, I had no idea! I want to put in a pitch for Argentina. I was in Buenos Aires last year and earlier this year and found the level of celiac awareness to be much higher than in the United States. There are many many products that are "apto para celiacos" so there are some possibilities for snacka and even frozen empanadas, pizzas, medialunas and more in dieteticas (health food stores). What's fascinating too is that a Brazilian friend sent me the link for a 1992 gluten labeling law passed in Brazil that is better than what we have in the States now--and Brazil followed up in 2003 with an even stronger law requiring that a product says if it contains gluten or not. So. . . I have yet to be in Brazil as a celiac (spent a lot of time there before diagnosis) but it seems intriguingly advanced. I am going to research this more, if anyone has any insights on other countries' labeling laws in South America, Asia, and outside the US, Europe, and Australia, please let us know!
  9. Thanks for this advice! It is very helpful to hear from others. With regard to Starbucks, do you mean that the coffee drinks can contain gluten if they contain flavoring, or other products? I was thinking just buying regular coffee must be OK, or even a soy or lowfat latte. Hope that is true. . . And now I am reading about tea bags. Adjusting to this really is a huge checklist.
  10. I did my gluten challenge for 5.5 weeks. Two GI specialists told me very different things about how long was necessary. The head of the department told me I should wait for three months (and I thought NO WAY AM I SITTING IN BED FOR TWO MORE MONTHS!) and the GI specialist who did the procedure thought 5.5 weeks was plenty. Apparently it was since the test showed moderate to severe damage! I am so glad that I did listen to my body in this sense and not wait any longer.
  11. Hi all. Thank you for your thoughts. . . Just thought I would provide an update. I postponed to think and research more and decided to go ahead with the biopsy. I found that I respected medical authority in this case--two doctors told me they recommended it because this would be a 60-year commitment to a strict diet and I should know. And I found that I agreed. In the long run, $2K would not be a lot of money and I am someone who likes to get to the bottom of things. I like depth. The crazy thing was the health plan Kaiser Permanente would not tell me how much the endoscopy would cost. Because I have a deductible plan (and no one understands deductible plans, they told me, incredibly, about their own plan), they said it will be a range of $2K to $4.6K. After six calls, no one could say. On the day of at the admitting department a paper-pusher told me it would likely cost $2k. The people in the billing department seemed like zombies, and the doctors said they had no idea about cost. I arrive in the OR to have the procedure and meet my GI specialist for the first time. We talk about my case and my books. I am a writer. He seemed more interested in my work than celiac, really. I told him, please only do what is necessary because I am paying out of pocket. He asked, have you considered doing the procedure unsedated? A surgical assistant called down and found out the endoscopy cost $70 without sedation. I did the endoscopy without sedation. It was very challenging. Every time he pumped air into the intestine to take another biopsy sample, I gagged with a small-garden-size hose down my throat to my stomach. I was just holding on to get through it with the surgical assistants rubbing my hair and telling me I was doing such a good job and it was almost done. The doctor told me it would take 7 minutes. I have no idea how long it lasted. My nose was running after they finally removed the hose from my mouth (with metal at the end) and I was shaken inside. Literally. The doctor had told me that most people around the world do the endoscopy without sedation. I wonder if that is true. Because I spent the last year traveling in South America and went to medical clinics 8 times during my travels (probably got so many infections because of the celiac), I thought--if they can do it, so can I. I'm glad I saved the $2K. If they try to charge me more, I will engage a lawyer to fight the bill. And the results show moderate to severe celiac damage. So there is no doubt now. I am in the SF Bay Area if anyone knows of meetups. It is time to meet celiacs.
  12. Hello everyone. I recently received the official biopsy results that showed moderate to severe damage caused by celiac. Even though I knew it was 95% or more likely that I have celiac based on my symptoms and blood test results, I found it quite a shock to find out that it's really official. I'm reeeling but also I have a lot of hope about embracing gluten-free as a positive change in my diet and life (thrilled to experience already and read about improvement in imsomnia, for example--I was off gluten for two months before doing a 5-week challenge). I would like to speed my healing and was wondering if anyone has advice for a good detox diet to speed recovery. Some alternative health people say fasting or cleansing is good because the stomach is not so busy digesting food it can repair itself faster. Is that principle considered true in celiac recovery? Are there particular veggies, foods, juices, probiotics, supplements, diets that have been found effective in helping people feel better faster than just eliminating gluten from the diet? I am not interested in eliminating a lot of other food categories right now, but are there particular foods to eat in greater quantities that others have found helpful? Thanks for all the help--this community seems stellar. Also, I am in the SF Bay Area and will be looking around for celiac meetups.
  13. Do celiacs really have to worry about gluten in makeup? I'm confused. I thought we would only have to worry about ingesting gluten. Can it actually be absorbed by the skin? For example, I thought touching a bread crumb is not important to avoid but eating one is. So is the idea that we ingest make-up when it drops into the mouth or that it is absorbed via the skin?
  14. Hi! I'm posting in a state of confusion and frustration, and I am hoping to find some informed people to respond, or at least some people who have gone down this road. Here's my story in a nutshell: In October and November 2010, I was traveling in Colombia and found myself increasingly fatigued, prone to infections, and so tired I just didn't want to do anything or talk. I came back to the U.S. and in late November my doctor found that I tested positive for: --iron-deficient anemia --the IGG and IGA antibodies used to test for celiac The recommendation was to do the biopsy but I was already planning to travel to Argentina and had the plane ticket. So I went, cut out gluten completely, and felt much better while dancing tango and being very active. I came back to the US and started eating gluten again in preparation for the biopsy to confirm the diagnosis. I have eaten gluten now for four weeks and for the last two weeks have been feeling worse and worse just like I felt in october and November, so tired that just taking a shower and getting dressed feels like a struggle. I am still taking iron pills and the iron levels had gotten better so I doubt it's just anemia. Now my biopsy is scheduled for tomorrow and the hospital called to do a registration form and the woman informed me the endoscopy will cost two to three thousand dollars. This comes as a complete shock. I feel confused about whether it is worth it to pay two to three thousand dollars when I have read it is likely that these endoscopy/biopsy tests can yield inconclusive results (i.e. not show villi damage). But then how to explain the unexplained anemia, the positive antibodies, and the fact that I feel so exhausted after two weeks of eating gluten? Can anyone advise on the value of doing this test, what it ordinarily costs, etc.? Thank you!
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