Mayo Clinic Connect
Would anyone have an interest in starting/joining a discussion about following a gluten free diet. What has worked or not worked and how it has helped or not helped. We can learn from one another.
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Yes very much so
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I am one year into the diagnosis of Celiac Disease and would very much interested in a discussion group.
Hi @guthealth and all,
While I don't suffer from celiac disease, I do have a lot of friends who do. Because of those friends, I have looked up a lot of GF recipes as well as taken note of restaurants in the area who offer a nice selection of GF menu items. I suppose you do the same?
Will you share with me in what ways you have made known (to your friends and family) how you deal with a GF diet when you go out to dinner or go to someone's house for a meal?
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I am very new to GF. Only been GF for three months. Use almond flour for the little baking I have done and carefully read all labels. Dealing with people is entirely different as I am always being offered items with gluten. I am just very patient, smile a lot and either decline or on rare occasions take a piece of the item, put it on my plate but then will not consume it. But that is hardest part for me. I am not a big cookie/dessert eater, so seeing others consume gluten items or cakes or sweets does not bother me. Just dislike when others become pushy and insist. I am also on other dietary restrictions right now so must be very careful with what I eat. Being healthy, however, is most important to me.
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It is difficult to eat GF when you are not at home. I have learned to be assertive with my dietary requests when eating away from home. I explain my condition and ask for special consideration. Many people do not understand Celiac Disease and the ramifications of consuming gluten when you have the disease Many choose to be gluten free because they feel better. We are GF because we have to be. There is a difference. When you are with a group of people, don't let them bully you into eating something you know is not GF. Don't even put it on your plate as you can cross-contaminate the food on your plate. I have been GF for one year and do not find it an easy way to eat, however, I feel much, much better. I had to deal with Dermatitis Herpetaformis which is a nasty gluten rash, and I never want it back. I was not much for cooking before diagnosis and confess I don't deal well with cooking GF.
What an awesome discussion! I think it was Einstein who said, “Information is not knowledge. The only source of knowledge is experience.”
And better yet is sharing our experiences, like we do on Connect:)
Another resource (GF-diet) that might interest you is The Gastroenterology & GI Surgery Page on Connect https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
Here are some talks by Mayo Clinic experts, to start with:
– Tips to Avoid Cross-Contamination in Gluten-Free Foods https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/tips-to-avoid-cross-contamination-in-gluten-free-foods/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/the-gluten-free-diet-a-practical-look-1/
– Know Your Lectins https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/know-your-lectins-1/
I have been GF about 4 years. Originally I went GF at the advice of a friend, who had the same condition as me–endometriosis. Sometimes, even GF will have ingredients that make me sick, like flaxseed, which I found out the hard way. When I researched flaxseed, I found out it topped the list of the top 3 foods with high natural estrogen. Soy was #2 and gluten #3 as the top highest foods with natural estrogen. Endo. feeds off estrogen.
After that bit of info. I was more motivated to stick to the GF diet. For the first time in my life, I actually have gained weight (I've always been underweight) since being GF. I finally got the nerve to start baking GF and used baking mixes to help me out. Now I'm getting braver to bake from scratch.
I've always been curious if I have Celiac Disease or not. And one day I went to my GI doctor for tests, not knowing that I had to be off gluten for accuracy.
He was able to take blood samples and I do have the genes, and the blood line. Dr. Said the Irish tend to get it more than others, and I am 50% Irish. The only thing I lacked was the antibodies, and they disappear when a person is GF long enough. So it is highly possible that I have Celiac. I do know I feel so much better, more energy, etc. Foods that I thought I was allergic too as a teen, like eggs, do not seem to bother me anymore, since being GF.
@airey2, I think you may have meant to say that you had to be on gluten (eating gluten) to be accurately tested for celiac disease. Or did I misunderstand? In this video and blog post, Dr. Murray talks about making the diagnosis of celiac disease in the patient who is already avoiding gluten.
– Was My Gluten Challenge Too Short? https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/was-my-gluten-challenge-too-short-2/
Airey2, looks like you've been gluten free the longest. Have you found it gets easier with time?
Welcome @jenglereckedbin @tona @lyndarm @kimass1 @guthealth. Can you share why you chose or had to go gluten free? What's your GF story?
I am literally just getting started. I have been diagnosed with Grover’s disease and have Hashimoto’s thyroiditis and my family has a miriad of health issues. I want to go gluten free to see if it helps with my health issues. I am going shopping this weekend and will start right after Christmas. Wish me luck ! I am looking forward to hearing others success stories.
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Yes! Any & all information is usefull. I have been gluten free about 2 years. I tested positive for the ' celiac' gene, but colonoscopy in Sept of 2015 did not find evidence of damage. My 2 docs say ' celiac' & 'gluten sensitivity'. My primary stated what difference does it make what u call it the result is the same. SO, no gluten if I want chronic pain & disorders to be less. Short list of disorders: peripheral neuropathy, hip bursitis & tendonitis, degenerative disc disease, celiac, SIBO, fibromyalgia, chronic fatigue, tachycardia, insomnia….I am also taking CBD oil as it really helps ME. I can't work, sold my house in LA county & been living off of for over 3 years in Oregon..It's almost gone, then what? Sorry it's so long…it could be worse 😁
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Sounds so familiar. You might look for a functional MD or LLMD. I have and progress is slow and roller coaster like but no opoids. Soc Sec disability is next for me…waiting as long as I can.
Best of luck.
Hi, @dlady, this is @mamacita, Volunteer Mentor for Mayo Clinic Connect. I I have many of the conditions you have mentioned, as well as IBS, Diverticulitis, and Autism. I cannot speak for anyone else, but following a basically gluten free diet has been a real lifesaver for me. It took me over one year, but I lost sixty five pounds. My A1C went down to 6.2, my blood sugars are normal, and I have tons more energy. My thinking is much clearer, my anxiety levels are down, and my Fibromyalgia flares are fewer. I also have Depression, which is much better with this way of eating. I basically count carbs, even the ones in vegetables. I have gone from a lunch sack full of meds to a small ziplock bag of prescribed medication. Two of my medicines were recalled because they were found to cause cancer. I do take a multi-vitamin and mineral every day, as well as Vitamin D, Calcium and Magnesium, and Vitamin C. My Primary Care Physician is totally on board with me trying every trick up my sleeve, the more natural the better. I hope that your health continues to improve and that you feel better very soon. I would very much like to be a part of this discussion. We can all learn from each other.
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Most definitely. Jane Brown
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