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cyclinglady

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cyclinglady last won the day on January 12

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About cyclinglady

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  • Gender
    Female
  • Interests
    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

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  1. I use Pamela's because it uses guar gum instead of Xanthan Gum. For some WEIRD reason my body doesn't like Xanthan gum even after all these years!!! 😩
  2. Tiny red blood cells may be related to Thalassemia (a genetic anemia which can produce minor symptoms in many cases). I have Thals and had iron-deficiency anemia. Was never an issue until I could not keep up with my iron stores (due to celiac disease and menopause) and my normal hemoglobin levels (which are always slightly below range) dropped very low. But bodies often adapt. I just wasn't going to get an Olympic medal! BTW, Iron will not help with Thalassemia. Your doctor should run a vitamin panel on you. Standard follow-up care for celiacs (includes Celiac antibody testing to help see if you are dietary complaint too). I am not suggesting you have Thals. Just something to consider. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  3. You can maintain a shared kitchen, it just takes planning and some rules. My kitchen was shared for 12 years until I was diagnosed and I previously controlled the kitchen. There is just the three of us, so two against one won. It is nice to have a safe place to relax. You will figure out what works best for you. Our daughter was 12 when I was diagnosed. She has tested negative so far. But let me tell you she does not miss eating gluten at home. She prefers a homemade gluten-free cake over bakery made cake. Really! She eats it at school and when visiting with friends, etc. I send her off to friend's houses with cake mixes or some gluteny thing to eat. Everyone is supportive. I have learned to bake gluten-free free and freeze goodies to take to parties so hubby and I are never left out. I pack lunches for him and co-workers are actually envious of his lunches! Our families and friends know not to expect any gluten in our house and are fine with it. I suggest definitely not baking with gluten flour in your kitchen, but the mac and nuggets are doable. Oh, I was just anemic when diagnosed and my hubby's symptoms were like having the flu. Gut issues were not our problem and the lack of GI issues is one reason celiac disease is often overlooked. I swear my GI must have just attended a seminar (though I never asked).
  4. Congrats, Ennis! Looks like you are doing a great job remaining gluten free. I can not give you an opinion about the endoscopy. I have no clue what would look good or not.
  5. DH is not as common and we have fewer members. I can recommend that you ask your GP for a celiac screening and then a referral to a dermatologist who knows how to biopsy for DH. Then keep reading through the DH section for tips and suggestions. There is a very specific way to obtain a biopsy. Keep eating gluten because all celiac disease/DH testing requires you to be on a gluten diet. Do not go gluten free yet! celiac disease can cause other rashes as well. Hang in there and so excited for your new arrival. Best wishes!
  6. Great advice given.....I would follow it. But the good news is that as you heal, you might find that you can now eat dairy! Yep! Wait until you feel better and then try yogurt or hard cheeses (less lactose in those items). Of course, you might be lactose intolerant genetically, but let's hope not.
  7. I am no doctor, but your iron and HB seem great! Why do you want an iron IV? Did you know that too much iron can cause serious illness? No medical doctor is going to give you iron if your lab results are normal. I was iron deficient. My ferritin was a two. It is a 55 now and I feel great. I have low body temps too. That is part of being hypothyroid. No need to worry. You can try an allergist to test you for a wheat allergy or find a new GI and re-take the celiac antibodies blood test, BUT you would have to go back in gluten for 8 to 12 weeks. Those Cyrex tests really are not recognized by the medical community. That is just the way it is.
  8. So sorry to hear that you were glutened. It happens to the best of us! I cope by eating well-cooked, easy-to-digest foods (think crockpot) like soups and stews. While I am feeding my family gluten-free, I am eating my mushy food! I am fine as long as I don't eat, but I have to eat. I also found (have been glutened twice as measured by follow-up antibodies tests) that I become temporarily lactose intolerant. My glutenings seem to last for a long time. I hope you recover much faster!
  9. Sella, Maybe you have something else going on. Can you get your celiac antibodies re-checked or another endoscopy? It might help rule out that celiac disease is causing your symptoms for sure. Then you can look at other things. In any case, dairy is safe for all celiacs who have basically healed. There are some exceptions. Some folks who are newly diagnosed or recovering from a glutening may have a temporary lactose intolerance. The enzymes to help digest lactose are released from the tips of villi. If your villi is damage, you can not release the enzymes which leads to intestinal pain. If a celiac still has a lactose intolerance after healing, they may be genetically lactose intolerant. A big chunk of the world population is lactose intolerance. They do not have celiac disease. Some folks are allergic to milk proteins (casein). They get gastrointestinal issues, body aches, rashes, hives, swelling and even anaphylactic death. Most cases are in very small children. Many kids outgrow milk allergies, but not all. Some celiacs have many issues besides gluten. They can be allergic to milk proteins (casein). An allergist can help you determine if you have any milk allergies. A milk allergy can damage your gut. It is not related to having celiac disease. It is a separate issue. There are many things that can damage villi besides celiac disease: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ I want to assure you that I have dairy every single day. No problems. I do become lactose intolerant if my celiac disease activates, but that is just temporary for me. Even when those celiacs who are still sick and doctors suspect trace contamination or Refractory celiac disease, expert doctors in celiac say most dairy products are safe (least processed). Here is the super safe celiac gluten-free diet and you can see that milk (casein) is allowed. You can find the original report on PUB MED but this reads better: I am craving some ice cream now! 🍦
  10. Just curious. I am sure you said before, but why are you avoiding dairy? Not celiac related, right?
  11. Hope you feel better soon! Say, you should be dining at Gourmet Girls Girls on Oracle. Open for dinners now. Also you can get breakfast and lunch at Dedicated located on Speedway. We eat there each time we are in town. Both are 100% gluten free! Dedicated has Challah bread baked on Fridays. It goes fast!
  12. I use Gabriel lipstick too. It is certified gluten free. Red Apple is also certified gluten free (available online). I am sure that there are other mainstream companies who manufacture lipstick that is gluten free, but the ingredient list is too tiny for me to read! 😆 My foundation is gluten free -- just a simple mineral foundation (I am kind of big on simple ingredients.. I do not worry about eye make-up. The odds of it getting into my mouth and swallowing it are slim and none.
  13. Hey, be careful about the chiropractor. Nothing against them (hubby used them for shoulder issues and used our old doctor's chiro), but if you have not been tested for osteoporosis or osteopenia, I would not let anyone manipulate my back. Just my personal-non-medical opinion. Two months after my celiac disease diagnosis, I fractured two vertebrae doing NOTHING! Paramedics, doctors, etc. though I had a heart attack. Got admitted, complete work up from cardio and my heart is good for another 50 years. Even though I kept telling them My back hurt. No wonder I could not get off the floor after passing out. My GP during my follow-up took the time to look at my X-rays. Can you believe it? Fractures. No one at the hospital caught it. Even though I told them I had celiac disease! Had a bone scan to confirm my poor bone density (which has remained stable and probably the best to expect given my age -- 55).
  14. I can not help answer your questions (my own rib and hip pain was a result of osteoporosis and occurred when trying to sleep on my sides), but I recently listened/watched this webinar: http://limelightdc.com/clientarea/naspghan_gluten_webinar_06_13/landing_page.html Several top celiac doctors (Fasano, Guandalini) spoke. Interesting. I listen to all kinds of weird things when ironing, etc!
  15. Victoria, I have not gone in these tours, but would love to try them. Why? Very little thinking or planning required. Ah, you could really relax! Maybe when our daughter is out of high school. Our next few summers are AP classes, band and sport camps! We'll be lucky to camp at the beach on a weekend. Oh, never count on the airlines to provide gluten free even if you call, email, etc. in advance. Bring food with you as a back up.