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Showing content with the highest reputation on 07/07/2018 in all areas

  1. 1 point
    Agreed, it depends on the person and length of undiagnosis. I've had Celiac's for approximately 26 years but was only diagnosed 7 years ago (I'm 40 years old). I just went for my three year gastrointestinal imaging series and not only have none of my villi regrown, the duodeum is actually turning a grayish black color. I have followed the strictest of gluten free diets and living for the past seven years but due to misdiagnosing in my teenage and early adult years resulting in my continuing of digesting and applying gluten foods and products I have no chance of my villi ever regrowing. I am now diagnosed with Ulcerative Colitis and am awaiting most recent biopsies to see what else is going on as I am unable to tolerate or digest even gluten free foods. Best advice, diagnose as early as possible and follow strictest gluten free diets and lifestyle to best manage and live pain free.
  2. 1 point
    First of all, I am someone who is not celiac diagnosed (tried the gluten challenge but got too sick to do it long enough so the celiac testing is not considered accurate). My daughter, who is 12 now, is also in the same boat. Not celiac diagnosed but gets incredibly sick with lots of neurological symptoms and now hives if she gets glutened. In many ways, it would be worth it to know if it actually is celiac, but a gluten challenge isn’t worth it...just too damaging. So, since you are early on in this saga, you might want to pursue celiac testing. But, even if celiac testing is negative, it doesn’t mean gluten is not a problem. It is really annoying when someone concludes that because you are not celiac diagnosed you don’t need to be gluten free. There are plenty of people on this site that need to be just as careful as a celiac even though they are NCGS (non celiac gluten sensitivity). With celiac disease, it is known that even small amounts of gluten can cause the immune response that damages your intestines. For some it extends to damage to the nervous system and skin. For those with NCGS, they just do not know exactly what the problem is so it’s hard to know just what damage is being done. But clearly there is damage—during my gluten challenge my teeth started to hurt and get loose, my hair was falling out, headache and dizziness made driving difficult, add that to the pain and fluctuating bowel habits and nausea. So, whether or not you pursue celiac testing, I think it is worth it the treat it as if you do have celiac disease. Because even small amounts of cross contamination can bring on symptoms. Read the New Diagnosis 101 thread. There is lots of good advice on HOW to be THAT careful. I can tell you that eating out is almost always a bad idea unless the restaurant understands cross contamination. Even a salad with seemingly nothing on it is likely in a kitchen next to croutons and the crumbs get into the other ingredients, not to mention using the same serving utensils...even a stinking salad is not safe if not prepared safely. It is difficult to avoid all gluten in the beginning. Whether or not each of these gluten exposures is THAT bad or causing terrible damage...no one can tell you for sure. With celiac disease it is more understood than NCGS. But I think worrying about how much damage you may be inflicting on yourself may be useless. Just do your best to feel better and learn for the next time. You can do this. But there is definitely a learning curve. Good luck and keep pressing on. The positive health affects are worth it. Oh, and FODMAPS. Go ahead and research it. But I for one am sick of people putting forth the Fodmap suggestion when your are not celiac diagnosed. I can eat high Fodmap foods all day long. Just not gluten. And because my daughter ‘s doctor tried to blame the Fodmaps for her and wouldn’t listen to me even when I handed her a food log demonstrating it’s not a Fodmap issue, when I did my gluten challenge I used vital wheat gluten just to show the doctor it WAS indeed gluten doing this to me. Edited to add: It took me over 6 months to fully recover from all of the symptoms I suffered from on my 4 week gluten challenge.
  3. 1 point
    My whole immune system is compromised due to late detection of celiac disease. I have hashimoto's disease, alopecia, gum disease and multiple food and drug allergies. My kids will bring home a virus and be sick for 2 days, for me it's 2 weeks. I had my heart surgeons PA tell me that due to inflammation in my body from celiac, it probably brought my heart disease to crisis earlier. I had a double bypass at 52 after a heart attack. My oldest son was diagnosed over the winter with type 1 diabetes, the endocrinologist told him it was hereditary - it didn't have to be diabetes per se, but if a family member had celiac or thyroid problems, probably stemmed from that. Feel free to ask questions.
  4. 1 point
    I have a suggestion for you. Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and organize the material. I think you need to ask people to give specific ages and dates of when their celiac disease and the other autoimmune conditions were diagnosed. Ask them how much time expired between the first perceived onset of symptoms and the official dx of both celiac disease and other other disorders. Ask them how they were diagnosed. Ask them what symptoms led them to seek medical intervention. Have some way of distinguishing between official and unofficial diagnosis of celiac disease and the other associated autoimmune conditions they. If you visit celiac disease forums very long you will discover that people blame everything from hang nails to lumbago on celiac disease without any evidence of association. Ask questions about their diligence in avoiding gluten. You could also provide space for narrative in your questionnaire. Just some of my own thoughts here. Hope this is helpful.
  5. 1 point
    Celiac.com 10/10/2014 - If you’ve ever had the pleasure of eating El Salvadoran, Nicaraguan, southern Mexican food, then you might be familiar with fried plantains. Plantains are like big bananas. When fried, they are soft, sweet and delicious. They can be eaten as a meal, or as a desert. They can even be served for breakfast with rice, beans and corn tortillas. They are often served with Mexican style sour cream, or ‘crema.’ Fresh plantains are common in the local restaurants, and ubiquitous in the local Mexican and Central American markets around San Francisco. Ingredients: ½-1 cup oil for frying 4-6 plantains (make sure they are very mature, not green—brown and soft is best) Directions: Heat oil in a large, deep skillet over medium high heat. Peel the plantains and cut them in half. Slice the halves lengthwise into thin pieces. Fry the pieces until browned and tender. Drain excess oil on paper towels. Serve as a side dish to a main meal, with refried beans and Mexican style sour cream.
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