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cyclinglady

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cyclinglady

  1. cyclinglady
    Heather, I am so sorry! Here is some information about the gluten-free diet that I hope you find useful. Celiac disease should be ruled out. It is a simple blood test: Open Original Shared Link I hope this helps!
  2. cyclinglady
    The gold standard is still an endoscopy. In Europe, they are diagnosing children without an endoscopy. In adults, the majority of GI doctors still choose to do an endoscopy. Why? Celiac disease in adults has so many symptoms. The blood tests are good, but not perfect. You can also have concurrent issues like Crohn's, cancer (very, very, rare), an ulcer...
  3. cyclinglady
    I live in Southern California. On hot days, I pack a cooler within a cooler. All my perishables remain safe. You can test with a frig thermometer. Use ice blocks (made from milk containers). Invest in decent coolers used for camping. I use the cute soft-sided coolers for hauling around on short trips too as they look more like a purse.
  4. cyclinglady
    I am sorry that you are diagnostic limboland. I am sure you have been researching and know that you can be seronegative. Getting a biopsy from the rash (there is a very specific way to biopsy so find a celiac-savvy Derm) can yield a celiac diagnosis. Another option is to go gluten free. Keep in mind that the antibodies in the skin can take a long time...
  5. cyclinglady
    Autoimmune issues tend to run in packs. I have a few myself! My kid has Reynalds. We are in CA too and she wears wool socks to school all year long! Her blue fingers freak out her classmates. No cure and it is not documented in her medical chart.
  6. cyclinglady
    Most celiacs have been ill for years or decades before being diagnosed. Amazingly, the body can adapt and survive. Just think of the Holocast survivors.
  7. cyclinglady
    Here are the tests: Open Original Shared Link An IgA deficiency test should be ordered too. This will determine if any of the IgA celiac tests actually work. Yes....this is genetic, so kids (all first degree relatives) would need to be tested. I would think one week off would be okay, but I am not a doctor. I would be more concerned...
  8. cyclinglady
    The University of Chicago's celiac website is a great resource to browse. You can learn a lot there like recommendations for follow-up testing: Open Original Shared Link Most of all, be patient! Recovery times vary, but many do feel better within a few weeks or months. The learning curve for the gluten-free is steep, so expect some set-backs...
  9. cyclinglady
    Welcome! Yes, your son should be tested for celiac disease, but I would not recommend genetic testing. I was in the same predicament as you. My daughter has tested negative (blood test -- antibodies) and her PCP also checked her thyroid and and for anemia (which was my only symptom) just in case she presented like me. We thought about genetic testing...
  10. cyclinglady
    Canyon Bakehouse. I buy it by the case and store in my freezer. The store gives me a case discount. Hubby likes it best. The bagels are good too. But......how long have you been gluten free? I would suggest not eating bread for a while. Given enough time, you forget what gluten bread tastes like.
  11. cyclinglady
    I am sorry that you are not well. I am not a doctor, but many members have been diagnosed with EOE? Has this been ruled out? Open Original Shared Link
  12. cyclinglady
    The nasal spray is safe, per the 2017 gluten-free drug list, but check the list as there are a few different manufacturers. Open Original Shared Link Claritin is fine. Get a Nedi pot. Helps tremendously. It is safe.....100% gluten free. Just use pre-boiled and the cooled water.
  13. cyclinglady
    I use both those Costco (Kirkland) brands cetirizine HCL and Ranitidine. I also use Claritin D 12 hour too. I think the Reditabs are gluten free based on the website, but check the label or post the ingredients if in doubt. Those are great for faster allergy relief.
  14. cyclinglady
    I would suggest a certified gluten free soy sauce, just to be safe. Test that and if you react, you'll be able to rule out a gluten reaction from La Choy.
  15. cyclinglady
    I suggest researching Mast Cell Activation Syndrome or EOE. Open Original Shared Link Also, Benadryl crosses the blood brain barrier and there have been long-term complications. Talk to your doctor about using another antihistamine. If your reactions have been anaphylactic, you should have an epi pen. I hope you feel better soon!
  16. cyclinglady
    Welcome! Yikes, first I would suggest that you consider a new doctor. Your doctor gave you some pretty bad advice biased on your posting. The celiac gene is common. Some 30% or more of the population carries the genes that could develop into celiac disease. Are you sure it was not an antibodies test? Telling you to go gluten free for a ...
  17. cyclinglady
    Good advice Ennis! I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out. Be sure to read our Newbie 101 tips under the coping section of the forum. Cross contamination is a big issue, If the house is not gluten free, make sure everyone is in board with kitchen procedures. Hopefully, your GI talked...
  18. cyclinglady
    What does weak mean? Like you squat down and and you can not get back up? Or are you fatigued? When you said blood panel, was your thyroid tested? Antibodies for thyroid should be checked if you have celiac. So many of us have thyroid issues.
  19. cyclinglady
    We are not doctors, but based on the results you provided, you tested negative on the celiac screening test. You could ask for the entire celiac blood panel to help rule out celiac disease. The other IgA that was high? It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid). In your case, the TTG IgA...
  20. cyclinglady
    Having experienced autoimmune hives (not sure if celiac-related) daily for the last four months (now controlled by a cocktail of antihistamines, thankfully), I would be super diligent about my gluten-free diet if I had DH. What do I mean? Like Squirmingitch indicated -- no eating if you did not prepare it.. The itching can drive you crazy. In my case...
  21. cyclinglady
    A celiac diagnosis is hard to absorb even for adults. She is old enough to understand and she now knows that she is different (that's so hard when you just want to be like everyone else). There is a grieving period that is normal. Be patient. If things do not improve, get her some help. It might be better to hear it from another trusted adult than from...
  22. cyclinglady
    But even if grown near oats (rotation), wouldn't washing and sorting your rice three times, yield a pretty clean rice prior to cooking? We eat dried beans. The same thing could happen with them, but I sort and wash. And eating rice causes you to drop your blood sugar? Typically, if a diabetic, it can cause a steep rise due to insulin resistance...
  23. cyclinglady
    Did you try contacting them?
  24. cyclinglady
    @len4ita-- it sounds like you need to decide whether you need an official diagnosis or not. You are going to have to decide (based on your own set of circumstances) if you are up to a gluten challenge for 8 to 12 weeks in order to build up the antibodies needed for testing whether they are found in your skin or in blood work. There is no easy way. ☹...
  25. cyclinglady
    You are right! A diagnosis of DH (skin biopsy) means you have a diagnosis of celiac disease and an intestinal biopsy is not necessary. A person whose celiac disease presents in the skin must take the same precautions as a celiac and maintain a gluten free diet.
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