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About cyclinglady

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    CD diagnosis: 3/2013 via antibody testing and biopsies
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
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    Orange County, CA

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  1. Here's another thing. Feeling deprived? Order two of the same item. I was hungry by the time dinner arrived!
  2. Well, I have never cruised on Carnival, but I am sure they can accommodate you. I assume that you have already alerted them that you require gluten free meals. If not, please contact Carnival immediately. Here are my own tips. Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!) Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it). When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants. Let them know you have celiac disease and must be gluten free. They may try to tell you that each dish is clearly marked gluten free, but really? Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not! The staff usually will go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies. We have to wait up to 20 minutes or so but it is worth it. Starving? Get a baked potato wrapped in foil until your gluten-free meal arrives. Now, do not do this every single time. Those folks have to go down several levels to fetch food and you don't want to be a pain. But if the main dining area is closed, they need to make an effort to keep you safe. On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies). My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room. We can always grab whole fruit (I wash it first) to snack on. I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often). Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner. Be grateful and not picky. We eat all meals in the dining room (or at least as much as possible). Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast! What a treat! At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time! They even let me tour the kitchen and showed me the allergy section. The only time I did not feel safe was at the buffet. We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it. Got the manager etc. So, be careful. Other cruises made us frozen Udi"s which was just fine with us. They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun! Tipping? We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time. For us, it was well worth the service and safety of our food. It does not hurt to slip some of the tip ahead of time (like after your first meal!) Oh, I checked your ship. You must eat in the diningroom if you have special dietary needs.
  3. Welcome! You were smart to think about cross contamination. Although it is great that there are so many gluten-free options out there, in the beginning it is best to try a whole foods diet, until your son feels a bit better. The learning curve for the gluten-free diet is steep. It is better for you to get everything down before letting others feed him. When I was diagnosed, my hubby had been gluten free for 12 years. I thought I knew the drill and converted right over to those gluten-free goodies I baked him. Turned out, like many of us, I had some food inolerances not related to gluten but as a result of gut damage. So, additives like Xantham gum made me think I was getting glutened, but I was not. So, again, try to stick to naturally gluten free foods that are less processed for a while. When you do venture out, I use "find me gluten free" and read the reviews from celiacs (not a person who thinks gluten-free is a way to lose weight! ) Here are some great tips from out Newbie 101 thread:
  4. I am sorry that you are sick! Unfortunately, all celiac testing requires you to be on gluten. 😔. Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease. Here is more information: in the meantime, you can eliminate dairy products temporarily. It may provide some relief.
  5. I checked the Gluten Free Watchdog (I subscribe) and did not find this particular product, but found the company's oat bran flakes which did not list any gluten ingrediants, but barley was found in testing well over 20 parts per million. I would stick with certified gluten-free cereals, personally. I think it is "hit or miss" on grain products.
  6. What about Xanthan gum? It really bothers me, so I avoid most commercially processed gluten-free breads, etc. Never bothers my hubby though.
  7. He might have celiac disease (or just the start of it). He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it. He might have other food intolerances (milk, dyes, etc.). You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.). Trialing a diet is fine, even a gluten free diet, when you ruled out everything. But you have that quirky TTG result. I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation. An allergist is not a celiac expert nor is primary care doctor. You should get a referral to a Ped GI. If she/he suggests a gluten-free diet, then fine. Because if he improves then, the GI will give you a diagnosis. By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy. This case is not clear and that is a bummer. The cure is the diet. But he will be going to school and a diagnosis will pave the way for accommodations all the way to college. And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing. This is his life and yours. You must do what is best for your family. I wish you well and we are here to support you. I care. I am mom.
  8. I did not mean to imply that you should put him on a gluten free diet. If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy. All celiac testing requires a patient to be consuming gluten. The slightly equivocal TTG? That warrants a gene test at the very least.
  9. I react to certified gluten free breads, but it is NOT a gluten issue. I react to Xanthan Gum. I do just fine making my own baked goods from scratch subbing out the Xanthan Gum for guar gum. My gluten-free hubby does well on commercially gluten-free baked goods. It is just a food intolerance issue in my case. Look to other ingredients.
  10. If you are certain that gluten is an issue, then ask your doctor to run a celiac panel. I did when I was glutened last year. My "glutened" symptoms changed so much that both my GI and I suspected something other than celiac disease flare-up, but blood tests revealed that I had gluten exposure. This may be your chance to get a diagnosis. Also, sick people come first in our house. Everyone in your household, in my opinion, should be gluten free until your health improves or you learn to manage a shared house safely. I wish you well.
  11. This is about keeping your daughter safe. Yes, tiny crumbs can do damage. Can you have a shared household? Yes, but with plenty of training. I did it for years for my hubby and before I was diagnosed. But I was in charge of the kitchen. I did not let my kid into the kitchen for the most part. I love her but she is a kid! I had total control because sick hubby means no food...bills....he came first. Then i was diagnosed. We went 100% gluten free -- even my kid. Yep, last night she had a pot roast sandwich on gluten free bread, like her Dad. I prefer lettuce wrapped. Today, she had a croissant that I had frozen and put it in her lunch. She assembles her sandwiches at school. I gave her prepackaged serving of cookies as a treat along with veggies and fruit. I keep her on gluten but let her eat it anywhere but in our home....okay, the porch is okay! Our family and friends do no not bring any gluten to our house. Yes, our holidays are gluten free and no one misses it. My kid even prefers a chocolate gluten free mayonnaise cake for her birthday over a store bought bakery cake. It is that good (everyone asks for seconds so they are not just trying to be nice.). Even my dog is grain free! You are going to have to see what works for you as a family, but sick people come first.
  12. A biopsy will confirm a celiac disease diagnosis. The genetic test will help rule out celiac disease. It can not diagnose it. That is because some 30% of the population carries the genes needed to develop celiac disease, but only 1% actually go on to develop it. Her test results look look positive to me, but I am a STRANGER without a medical degree. The facts I stated in my first paragraph can be googled for accuracy though. I hope she feels better soon! Keep her on gluten until all testing is complete.
  13. Maybe. Maybe as there are over 300 symptoms attributed to celiac disease. So many of them overlap with other issues. If he is diagnosed with celiac disease, he can still have allergy issues. Keep him on gluten until all testing is complete (hard, I know!). I hope he feels better soon.
  14. KarenG is wise, wise, wise!
  15. There is a lactose intolerance test, but avoiding all sources of lactose (milk sugar) and milk proteins (casein) might be worth it if your husband agrees. Research more about this. Not everyone has rashes and vomiting. You can have mild allergies that worsen seasonally. Geez, I don't vomit or rash up when I ride horses or breath in mold or ragweed (but I do and have gone anaphlatic with medications). Allergy testing is spotty at best. Try keeping a food, symptom diary. It might help. Avoid processed foods. He could be reacting to the colorings, preservatives, etc. This wouldn't hurt anyone in your family! In any case, trust your gut! Something is wrong. Keep advocating for him. As a mom I worry about some weird symptoms my kid experiences. She tests negative so far to celiac disease, but autoimmune issues run like crazy in our family. i just keep a watchful eye, along with her doctor. No need for her to suffer for years like so many do with AI issues. That is one positive thing about my celiac disease diagnosis. My 19 year old niece had vomiting issues and abdominal pain. celiac disease was ruled out, but we persisted. She was just diagnosed wiith Crohn's and the damage found on the pill cam was severe (in a spot not reached with an endoscopy or colonoscopy yet her symptoms did not match the standard Crohn's symptoms. She now knows to watch out for celiac disease for the rest of her life. IBS issues? Your other family members should be tested for celiac disease. I would not accept an "I be stumped" diagnosis.