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beachbum

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beachbum last won the day on October 15 2015

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About beachbum

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    Cooking, Reading, writing, gardening, canoeing, hiking, birdwatching, dancing, theater, music.
  1. My experience is similar. 13 years since diagnosis. Although nausea has been a symptom for me vomiting is not typical. I was glad to see this post...when I have an atypical reaction it is easy to doubt myself. After eating out, I awoke in the early morning very nauseous and finally ended up in several vomiting episodes. Once my stomach was clear, I felt much better and I did not end up with the cramping and bloating. I had no signs of food poisoning or stomach flu and it ended as abruptly as it began so I'm sure it was gluten.
  2. I had similar neuropathy issues. Doc checked for MS, lupus etc all negative. Endocrinologist work kept coming back normal. Finally diagnosed hypothyroid a year or so after celiac Rx. It took several years on gluten-free diet for many of my symptoms to subside. i had severe deficiencies by the time I was diagnosed. i have been 10 years gluten free now, but this year I started getting neck pains, headaches, nausea, and pain in the thoracic/chest region. Doc did complete heart workup because of the nature of pains. I went to a chiro wanting relief from the neck pain, both she and i thought my symptoms could be possible gallbladder issues. It turned out my thoracic region was pushed forward and lacked the natural curve which in turn pulled my rib cage outward causing constant pressure. By the end of the week my pain was nearly resolved…I chose to start with least invasive solution first. Glad it worked this way this time, it can be frustrating going through months of testing with inconclusive results. Good Luck to you!
  3. I had hair loss but it was a secondary response to my Celiac disease. I was so anemic and malnourished that I had significant hair loss, including on legs, forearms, the fine hairs on the finger and toe joints. I also developed thyroid issues which took significant time to diagnose even though I had been seeing an endocrinologist...I had ALL the symptoms of hypothyroid except the test results kept coming back inconclusive. Once I started thyroid Med hair loss stopped but still didn't have regrow the of loss. That finally happened once my anemia was under control AND my vitamin D was up. I swear the balancing of my vitamin D was when my hair started to regrow. I now have hair on my arms and legs though more sparse than before. I also have fine hairs on my fingers and toes again. My hair on my head is thicker and grows better. I am female close to menopause, but my hair is fabulous. If you find that you're vitamin D is insufficient, I would suggest Super Daily D drops by Carlson. I have found that I don't absorb tablets as well as liquids due to irreversible gut damage this product worked for me.
  4. My youngest was always at the 5% or below until she was finally diagnosed celiac at 9 years. When she went gluten-free she grew 4 inches, next year 4 inches, next year 4 inches. I nursed her until she was two (she had solid food as well of course) ....she was so small....I remember people seeing her in the grocery cart and hearing her talk, saying "OMG listen to that tiny baby talk!" She was hitting milestones properly except for growth, so the doc never worried too much. I do remember my babies were sensitive to my diet as it pertained to breastmilk, but none of us were diagnosed celiac at that time. So I my experience didn't question that part of my diet. I might suggest you pose this question on the babies and children's issues board.
  5. We have all been warned about tricksy stunts included in fine print. We all know someone who has been duped by a some technical legal speak. But what about the in your face statements that are just plain misleading? When it comes to gluten free statements, errors whether accidental or intentional can be harmful. The sad thing is that as more companies want a piece of the gluten-free pie, not all companies take due diligence in understanding gluten-free. Just yesterday I experienced this not once but twice!! My friend brought over a box of meatballs that said in big letters on the front GLUTEN FREE…luckily I read the back label. The ingredient list for the meatballs was gluten-free, but the separate mango sauce ingredients clearly identified wheat as an ingredient. What if she had not brought the box? What if I had not double checked and just believed the marketing? How could this product be labeled gluten-free if everything in the box was not actually gluten free? This is poor and dangerous marketing. Later I was shopping online for a gift basket and "Oh joy!" the company had a link to their gluten-free products. Unfortunately, the statements made on their webpage were clearly done by someone who had a limited understanding of celiac needs. I was very angered, not because it misled me, but these kind of errors mislead the well-meaning friends and family who sometimes don't quite "get the gluten thing". Following is my letter to the company: I am disturbed by what you have written about your gluten-free offerings. Your description gives me ZERO confidence that your products are actually gluten free. I and two of my daughters are Celiacs. Your ignorance and misinformation in your write-up distinctly says you do not understand gluten free. First of all, you say that your funnel cakes are 100% celiac-free…WHAT? They are either "Celiac-Safe" or "Gluten-Free". Then you go on to say that the lucky gift recipient doesn't HAVE to be gluten-intolerant…WHAT? Like we can decide to just not be gluten sensitive. Its an autoimmune disease! Would you advise other autoimmune sufferers similar advice…juvenile arthritis-you don't have to avoid sugar… MS-you can control your muscles if you choose... rheumatoid arthritis-you can master the swelling and disfiguration of your joints...alopecia-you don't have to be bald… If you think these statements sound ridiculous then think what you are saying to celiacs and especially our friends or family who may want to purchase a well meaning gift but are misadvised by your marketing rhetoric. Your statements leave me with three varying degrees of thought: #1 your company is insensitive, (or worse yet) #2 your company is ignorant (or worst case of all) #3 your company is deliberately negligent. It would be great to get a response from your company and even better if your company fixes the egregious error on its webpage. I hope that those who continue to speak up can make a difference for the entire gluten-free community. We have already seen strides in laws and labeling, but I advise everyone to always read the fine print…our bodies do!
  6. My first blog takes me back 5 years ago when my youngest daughter started her freshman year of high school. She had been diagnosed Celiac for 5 years at this point, by now I was sure my daughter had come to terms with her restrictive diet. She was happy-go-lucky Madeline, ever smiling, always positive, living every day with joy. Little did I suspect that the social acceptance of being a young gluten-free teen was secretly troubling her and it was about to burst forth in a profusion of tears and sudden flight from her classroom. All because of just one cookie! Nobody wants to read the minutiae of a teenager's day, so I will sum up the event. Choir class of 100 students, dozens of cookies left over from an evening event, the class is all offered cookies. A hundred girls each enjoy one delicious cookie while one girl sits among them with nothing. Madeline politely approached the choir teacher and asked if she could get something from the choir store since she couldn't have a cookie, at which the teacher replied, "Madeline it's just one cookie!" [insert gushing tears and dramatic stage right here] Two class periods later, the oldest sister, Claire, enters the choir room. Claire is a gifted singer, little miss detail and unofficial teacher helper…she is also a Celiac. The choir director is concerned about Madeline's meltdown and speaks to Claire asking if her little sister is always so emotional over things as insignificant as "Just One Cookie". Claire's response is spot on. "Sir, you don't understand, its not just one cookie…its one cookie yesterday, one cookie today, one cookie tomorrow, and the day after that and after that and after that…it will never be just one cookie for her!" Four years later at Madeline's graduation party, one of her fellow graduates (also a Celiac) came up and hugged me and said. "Mrs. Wilson I have been looking forward to Madeline's party all week because I knew you would have Gluten-Free cake. This is the only piece of graduation cake I will get to have." Wow! She, too, was longing to fully participate, to have the same experience as everyone else. All I could do was hug her, congratulate her on her graduation, and ask if she would like me to wrap up an extra piece for a rainy day. Over the years I had gone to great lengths to ensure my girls were fully included in sleepovers, cookouts, and pizza parties because sharing food and drink is the most common form of social ritual, an intrinsic part of feeling included. I found that when it comes to a gluten-free lifestyle, its never been about "Just One Cookie".
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