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weluvgators

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Everything posted by weluvgators

  1. weluvgators
    My understanding is that the 2003 study that included Dr. Fasano demonstrated that 60% of children and 41% of adults were asymptomatic at the time they were biopsy diagnosed through screenings done for the study.
  2. weluvgators
    We identified h. pylori in stool testing. Our second hospitalization treatment was a 24 hour elimination diet, including a stop of the oral antibiotic that we suspect may have been a potential culprit in the second episode. During this time, our child became so reactive that she hived at the grocery store from the in store bakery. It was so discouraging...
  3. weluvgators
    oh, domesticactivist! That is such a similar experience as we had this past summer, leading for our daughter to have irrigation and debridement of the hip. And we knew we had extensive gluten issues, and we knew that she had been exposed pretty badly leading up to it . . . but she had also been bitten by a tick . . . and it was preceded by horrendous, horrendous...
  4. weluvgators
    We went gluten free for our second, most obvious child that was never able to tolerate gluten orally. She had systemic, permanent damage from gluten exposure through my breast milk in her first 14 months of life (tooth staining, decay, and improper formation). After going gluten free for her, we came to realize that her older sister and myself have serious...
  5. weluvgators
    In our family's experience, normal blood work did not indicate complete removal of gluten. We still found ALOT of trace gluten in our diets, and removal of those trace glutens improved our health. YES, absolutely. One of our daughters starts to literally bounce off of the walls and speaks in a cartoony voice. She can quickly spiral into an unreachable...
  6. weluvgators
    I am sorry that you are having to endure uneducated medical "care". We are in a similar situation with the diagnostics, but we have recently gained more documentation of the severity of our issues (after 4 1/2 years on the diet). It has taken a lot of doctors to find much understanding though, and we have gone straight to the ones that had recommendations...
  7. weluvgators
    We have reactive arthritis issues in one of our children, and I have joint pains with gluten exposure. Tiny amounts (from cross contamination) of gluten seem to aggravate our arthritis issues horribly. We have been treating other issues as well to help us gain some capacity and resilience with less reactivity with arthritic episodes. It is hard! But living...
  8. weluvgators
    And some of us here are dealing with both Celiac AND Gluten Allergy. And I need a helmet - that bubble suit was missing the most important part. I need protection for my eyes, nose and mouth. I just don't understand this "gluten free" nonsense of considering that up to 20 PPM is in any way permissible. But I am a biased allergy sufferer who lost...
  9. weluvgators
    After eating at my mom's house last week, I can relate to your struggles so well. My mom has been cooking gluten free for our family when we visit her home. There are rigid protocols about discontinuing all flour 48 hours before our arrival. She is very knowledgeable about gluten and a very good cook. She has been incredibly understanding and supportive...
  10. weluvgators
    Thank you so much for this! I am consulting with a new allergist . . . hoping it goes better this time, as the last one just shrugged his shoulders and didn't know how to help us. I was "asymptomatic" when I went gluten free as well, and now I find myself dealing with a similar symptom. So are you now able to be around airborne gluten in any form? Thanks...
  11. weluvgators
    What is this and why does it happen? I get the *same* thing - or something very similar. I try super duper hard to keep it from getting bad. The fall/winter season is the hardest time to keep it under control for sure. I have wondered if my skin has lost some functionality, and it has often been flared by trace gluten ingestion. We also have something...
  12. weluvgators
    I was not trying to point that celiac is specifically listed as a "disability", as it is not. I was trying to provide information so that each individual can approach this as their specific situation requires. Here is another link: Open Original Shared Link It highlights something very important in this discussion,
  13. weluvgators
    It took me a bit to realize that my oldest is almost the same age as your daughter - she just recently turned 7! I can't believe I have a 7 year old already. I let me kids guide me in feeding them. They are the ones that have to learn to live with this, and I really respect how well they have navigated it so far. We were unable to get a formal...
  14. weluvgators
    Here is one page that discusses the issue: Open Original Shared Link "Food Allergies" are gaining wider recognition and acceptance as a disability that needs specific accommodation in the school setting. Our district is encouraging us to implement Individual Health Care Plans as opposed to the 504, and I am trying to better understand the distinction...
  15. weluvgators
    I think that requesting a 504 evaluation is in order for your child. I think that there needs to be a 504 or Individual Health Care Plan (IHCP) in place for his safety and well being at school. Part of the plan is EDUCATION about his medical condition for everyone involved in his care. I took a letter from our pediatrician that included our suspected diagnosis...
  16. weluvgators
    How is she doing? I was skimming through again, and this stuck out at me - my kids have been unable to find a medicine to touch the pain they are in when a gluten reaction happens. It is awful. Heat packs, ice packs and cool, wet cloths have been the most effective. We also use homemade lemonade - fresh squeezed lemon juice, honey and salt in water. ...
  17. weluvgators
    I dropped hemp milk after getting all positives for every gluten home test that I ran on it. It was when I first started testing, and I couldn't believe it! So I ran several tests on same and different boxes in disbelief. I later tried another brand of hemp milk with the same results - positive for gluten. One of the manufacturers did share that their...
  18. weluvgators
    I was asymptomatic when I went gluten free, as was my oldest child. We went gluten free for my second child, and we now have significant and serious symptoms with gluten exposure. Hindsight gives it a slightly different perspective, as I had spent my whole life "normalizing" my symptoms . . . I mean, you have to do something to cope with life, right? My...
  19. weluvgators
    We have been working hard at school and preschool procedures and policy for a bit now. Let's hear more details about her time at preschool please. Is anyone eating? Is there *any* gluten in the classroom? While we use gluten free playdoh in our childrens' classrooms, they still must follow strict cleanup procedures after its use because it IS contaminated...
  20. weluvgators
    I can appreciate how life altering learning about celiac disease is. I learned about it because of my nursing daughter. It has been an interesting few years as we try to unravel and understand what is going on with our health and gluten intolerance! It would be so wonderful to have more awareness in the grocery industry! I love stores that have the...
  21. weluvgators
    Do you have a local support group for celiac and/or gluten intolerance? They may have some recommendations and suggestions for you too. For one of our daughters that has the more prominent intestinal symptoms, a heating pad held to her stomach is how we have handled past episodes. She would curl up around it. I am sorry to hear of your daughter's pain...
  22. weluvgators
    I just have to share that I ate the most amazing muffin yesterday. It was an apple muffin cake of sorts. It was so amazing that I had to go ask the chef what the ingredients were since every part of me was convinced that this was an apple fritter/donut mix. But it was better than any apple fritter than I had ever had before, as I felt fabulous after eating...
  23. weluvgators
    Applesauce cups, pudding cups or Jello cups might work. Just Tomatoes makes some really cool individually packed ones too - they have Back to School, Easter and 4th of July labeling to choose from: Open Original Shared Link . . . although those are on the pricier side, but my kids got a kick out of them for occasional party treats. Little raisin and cranberry...
  24. weluvgators
    We have experienced arthritic issues that seem to be rooted in gluten exposure. Our daughter was hospitalized twice this summer with idiopathic episodes. In all of the doctors that we have seen, they do not know why we are having the issues that we are. And in response to whether or not it is related to our celiac and gluten intolerance issues, one of...
  25. weluvgators
    You can heat up leftovers in the morning and pack it into a small thermos for a warm lunch if that is her preference. There are lots of wonderful things to still pack in her lunch! Both of my girls request very different things, but they figure out what works well for them. Good luck to you and your daughter. I totally understand freaking out about it...
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