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weluvgators

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Everything posted by weluvgators

  1. weluvgators
    We use gluten home tests - ezgluten and glutentox so far. Home tests use antibody technology, not ELISA as I understand it. I understand that running ELISA tests requires a fair amount of lab equipment investment, not really practical for home application. This antibody technology also may require certain review for customs/quarantine issues. Recommendations...
  2. weluvgators
    William Davis, MD, a cardiologist, wrote the book "Wheat Belly". You may find some good information there - Open Original Shared Link I think that the Gluten Free and Beyond site also has some members with heart and gluten experience, so you may want to pop in over there and ask for some direction - or just explore The Gluten Files there, as it is a great...
  3. weluvgators
    I think soy is often taboo even for the standard celiac - there is an inherently high risk of CC in standard growing and handling practices. Pacific Natural Foods should be able to tell you about the soy from the field to the box, so I would be hopeful that perhaps they have figured it out as well as can be expected (ask if they are using dedicated equipment...
  4. weluvgators
    Super sensitives that I converse with have these struggles, including myself and my kids. Our family also has gluten "allergy" in addition to our celiac, and it stinks. We had to remove gluten from our environments to stop our skin issues, as it was chronic skin eruptions when we were simply around other people eating the stuff -high density, high gluten...
  5. weluvgators
    I have found Pacific Natural Foods to have great customer service, and I highly recommend calling them if you can. We do not consume soy, so I have no idea how their soy milk is. Their hemp milk did not pass our testing when it was first introduced, but they work very hard to get clean foods. We have been very happy overall with the information and follow...
  6. weluvgators
    You may be interested in learning more about how mushrooms are grown. Here is one link I found: Open Original Shared Link
  7. weluvgators
    We often use an ultrasonic food washer - that is amazing stuff, not even from a gluten perspective - it truly opened my eyes to how thickly coated some of our produce was! We also use a soap and water with scrub brush method. We generally follow a three wash process - first with soap and water, the next two with water only. Our washing processes depend...
  8. weluvgators
    Good luck! We always end up with doctors guessing what's wrong . . . and they never seem to *know*. Gluten contamination always seems to be as likely a suspect as anything else that they end up ruling out . . . hard to rule out "gluten contamination" in today's world. I am sorry you are enduring so much trouble. We spent the entire first 1 1/2 years of...
  9. weluvgators
    Was that because a newcomer to the board posted as everyone else does, but didn't undertand the unstated caveats needed to ask a question for which she needed a super sensitive perspective? And who would have guessed the tension that would ensue by having super sensitive people discuss their issues? I don't think it is fair to say without also disclosing...
  10. weluvgators
    You certainly didn't mean *all* of us when speaking on behalf of "the rest of us". I am still here, even though I often feel a grudging tolerance for our gluten hypersensitivity that seems to put us into a unique classification for which you feel sorry. Other people for whom this information applies so well may not even bother to speak up or share their...
  11. weluvgators
    I do not have much knowledge on this either, and I would certainly love to understand it more. When I was looking up Mount Gay rum, I was surprised to see that they age their rum in previously used for bourbon wood barrels. From their website: Now, bourbon is considered a corn whiskey, but apparently the grain mix just needs to be 51% corn according...
  12. weluvgators
    I ran across this recently and took it to one of our pediatricians already:
  13. weluvgators

    Hi! I've seen some of your posts and I was just wondering what your children's wheat allergy symptoms are? My daughter's are both gluten intolerant (no official celiac diagnosis though) and I've definitely wondered if our youngest might have a wheat allergy as well. Thanks!

  14. weluvgators
    Our children's "growing pains" were gluten related. Once we better understood the precautions that we needed to take as gluten super sensitive people, the growing pains abated. An incident with the "less sensitive" child eating "gluten free" processed foods (that her more sensitive sister and mother would not eat) ended in two hospitalizations for crippling...
  15. weluvgators
    Thanks, Janet, for articulating the process that you have in monitoring you child's condition. It really helps to know that others out there understand what we struggle with when managing celiac and gluten intolerance for our kids! When we have had fruit trays made at our local grocery store, they make special provisions for us by making it in the deli...
  16. weluvgators
    Have you checked all of your medicines? Do you have a shared kitchen? And have you reviewed toiletries? Those are a few things that come to mind as possible next steps in looking for potential gluten contamination issues beyond what you mentioned. I hope that you find answers soon! I would review medicines, kitchen status and toiletries with a more critical...
  17. weluvgators
    This is where I quoted their description from: Open Original Shared Link
  18. weluvgators
    Pacific Natural Foods has announced their NEW Seven Grain Beverage,
  19. weluvgators
    I am curious how Purkinje cells develop and grow in children - any idea? Thanks for the info!
  20. weluvgators
    oops - I had no idea that that lab company was banned . . . hopefully you have enough info there to figure it out or you can email me from my profile page, I guess. I don't think I have PM privileges. We did not consult directly with that lab, as we went through healthcare providers that use them and other labs based on what their patients need.
  21. weluvgators
    The (Company Name Removed - They Spammed This Forum and are Banned) 0091 Organix Comprehensive Profile was used to identify some of her issues (like the B12 dumping, as I understand it), and the (Company Name Removed - They Spammed This Forum and are Banned) 2100 Gastrointestinal Function Profile was used to identify other issues (like the infection). These...
  22. weluvgators
    I am sorry that you continue to struggle with elevated antibody loads. I hope that you are able to figure things out soon. It has taken us years to figure out what works well for our family. Having other Super Sensitives to help in our journey made a huge, tremendous impact in our health and well being. I consider us to have a conservative gluten free...
  23. weluvgators
    Our second child was the one that clued our family to our gluten issues. Mom and kids are now strictly gluten free, and we maintain a gluten free home. If you are dealing with wheat/gluten "allergy" issues, then the rain barrel analogy that is common in managing allergies may help you understand it. You have a rain barrel - the capacity of your rain...
  24. weluvgators
    We use MedicAlert. My DD and I always wear our bracelets, and we carry our allergy packs with us (we have emergency medicines for our wheat/gluten allergy). We keep a card that is included with the MedicAlert service in our Allergy Packs, and it has more detailed information, including doctor and additional emergency contact information (the MedicAlert...
  25. weluvgators
    My DD at 6 yo was having severe ataxia symptoms with gluten exposure - falling for "no reason", speech problems - both stuttering, forgetting words, losing track of what she was saying. After a severe episode that progressed in horrible ways last year, we tried to do more investigation with some terrific results. As hard as it is to find a doctor with gluten...
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