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- Scott Adams replied to Jane878's topic in Coping with Celiac Disease1My mo,ther married a bread making when I was 4
Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed...- 2nd autoimmune disorder at 12
- auto-immune disorders at 5
- (and 3 more)
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- Scott Adams replied to JForman's topic in Coping with Celiac Disease1
7yo struggling!
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out"... -
- Scott Adams replied to sillyac58's topic in Gluten-Free Foods, Products, Shopping & Medications1
Rice Flakes
I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free. -
- Scott Adams replied to Ginger38's topic in Related Issues & Disorders1
Food Allergies
Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The... -
- Scott Adams replied to Redanafs's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1
Diagnosis and further testing Celiac
It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease...
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By Scott Adams · Posted
Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together: -
By Scott Adams · Posted
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved. -
By Scott Adams · Posted
I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free. -
By Scott Adams · Posted
Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
By Scott Adams · Posted
It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.
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Thank you for that information!! I have learned so much since coming to this site and I really appreciate ALL the tips from everybody!!
I live in New Orleans, and I spend far too much time wondering about the what ifs and the logistics of getting out of town in non moving traffic.
My best bets have been to pack safe peanut butter and rice crisps, trail mix, some fruit leather, and lots of water. From experience, the cooler is the last thing anyone makes space for when family heirlooms are on the line.
My plan of action is to grab the container of paperwork, including my SS card, birth certificate, high school papers, medical papers (including diagnosis and Celiac guidelines, signed by my doctor), emergency/ evacuation contact sheet (my friends, family, and healthcare providers were all willing to give me contact numbers and e-mail so we do not wind up unable to locate each other like in 2005, and insurance card. I have a medium sized bag that I will fill with basic clothing, one photo album, and a small cooler. My fiance keeps his papers with mine, and has a bag of equal size. Food I need for the trip goes in the cooler, everything else goes out to the dumpster before we leave. I will buy food I need for the stay when I get where I am going (which is dictated by whether or not it has a WF in the vicinity, as that is my job and my food source).
Last time I had a hardcore evacutaion, we learned how very little you actually need, as opposed to what you want.
So- important documents, a week's worth of clothing, one heirloom or sentimental object, and enough food to get you to your destination. If you have a baby, plan ahead by bringing about a week's worth of food and diapers for them, plus enough water to make bottles and rinse them out.
Hope that helps!
~Destiny (is so stressed out)
I would also get some extra tissues, toliet paper, and flashlights too to take along. Some immodium.
Oh, wow... now you mention it. I cannot imagine getting stuck in evecuation traffic, getting a hold of something that disagrees with me, and not having immodium!
That would make evacuation even more nightmareish.
It would not be worthwhile to sacrafice your own health to help us. There are enough others doing the heavy lifting, knowing our area is in your prayers is help enough.
In the event you are ever displaced, try to have emergency numbers for your doctors, a signed note (on their letterhead) explaining your condition and diagnosis for another doctor wherever you wind up, and a month's worth of any Rx medication. If at all possible, I try to have my prescriptions moved to where I am going before I leave. Most of the time, the pharmacist has already left, though. Just as well, they need to move, too!
Hope this helps,
~Destiny
i think another important thing when stocking up on food is to make sure it's stuff you like and use on a regular basis, so you know how to prepare it, you're ok eating it, etc.
a great place to check out as far as food storage goes is www.bluechipgroup.net
they are a local supplier that i love, and on the food storage page, they have a 1-year emergency gluten-free plan! i'm trying to build one of my own for my family...it's so much work!
Got an answer about Ensure:
Hello Destiny,
Thank you for contacting Abbott's Ross Products Division.
Ensure
Last night I was remembering right after Katrina when we began receiving bus loads of evacuees and I, along with many other members of our local Celiac group, began making phone calls to our Celiac group leader and to the Red Cross, the local food bank, etc. to try to make donations of gluten-free food for evacuating Celiacs. All the pictures on TV showed the receiving areas handing out pizzas and burgers.
Any Celiac that might evacuate away from their known areas might want to keep a list of Celiac groups in their evacuation supplies. It would help you plug into the needed resources right away.
A List of Local Celiac Disease Support Groups/Chapters
https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0
And I will say that the Red Cross seemed rather clueless about gluten-free food but the food bank was willing to accept the food and keep it separate from the regular stuff. They put it in their medical area where they keep the diabetic food.