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.
Liked by Colleen Young, Connect Director, heathert, Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator ... see all
I'm interested. I have been gluten free on an off for several years. I've noticed that my pain is less severe and I feel so much better when gluten free. However, it's not easy. I would love a gluten free support group.
Liked by Teresa, Volunteer Mentor, Mamacita, Volunteer Mentor, shecancervive
Sure! I was confirmed with Celiac 4 years ago. I also have Crohn's, Fibromyalgia, and Autoimmune Hepatitis. I try pretty hard to stay gluten free, but there are those times…. To be truthful, with the other things I have going on, I'm never sure what is making me feel like s**t. One of my problems is that it takes a day or 3 before I realize I've been glutened and often don't know where I got the gluten. Such fun. Things could be worse. Merry Christmas!!
Liked by Teresa, Volunteer Mentor, Mamacita, Volunteer Mentor
I have been gluten free for over a decade. Nothing was marked "gluten free" back then and shopping for food was a landmine. Most restaurant staff had never even heard the word "gluten". By the time I knew I couldn't have gluten I had lost 20% of my body weight. My small intestine was wrecked. The first time we went shopping I had a meltdown and started crying in the grocery store's soup aisle. If anyone has questions, please ask. It is so second nature to me now that it is hard to know what beginners need to know. Hardest thing about being gluten-free is being careful to avoid cross-contamination. This can even occur at home if someone dips into a jar, spreads on bread, and then redips again. Wayward crumbs are also a landmine. It will be crucial to clean up your house first. After you master your home you can then branch out to restaurants, etc.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, Mamacita, Volunteer Mentor
as far as the daily part of the GF diet, i do find it is getting easier. But when it comes to special occasions (parties, vacations, etc) I find it is not. In part because I am naturally shy and don't feel free to tell everyone about it. But there are some restaurants that I am familiar with and frequent. They are Chick-fil-a (grilled chicken, and they do have a new GF bun), Jason's Deli is my favorite, Wendy's has baked potatoes, and Furr's Buffet where I can choose what I want. I do miss my favorite food of macaroni & cheese though, but have moved on to mashed potatoes and meat juice (not gravy).
I thought I explained why I went GF. I have endometriosis. A friend who also has endometriosis, advised me to go gluten free. My friend was told by her dr to go gluten free. When I did research at a later date,I found out gluten is very high in natural estrogen. Endometriosis feeds off of estrogen, therefore gluten would be feeding it. 3 years later I was tested for Celiac, and although I was gluten free at the time, the dr. did do a blood test. I tested positive for 2 out of 3 items in the blood test. I was advised to remain gluten free.
I have given up all carbs. I tried gluten free for 6 months and noticed no difference in any symptoms. Along with all carbs I also gave up all sugar, natural and processed. Now 2 1/2 months later am free of chronic female yeast issues and my 3 forms of eczema are in remission. Not only will gluten pass through the intestines to raise my histamine levels, but it along with sugar and other carbs, not just gluten free, feed the residual yeast in our intestines that will never die out with a food supply of gluten and sugar. They need sugar to live. It takes 2 months min. to kill off the yeast. After 5 weeks the sugar craving diminished and now 2 1/2 months later don't think about sugar every hour!!! No issue baking for my family or watching them eat it. I pass the candy jars without my mouth watering. It is because the yeast which sent signals to the brain to feed this addiction were starved to death. I figured I would suffer though this detox for 2 months and see if it helped. It did, now I supposedly can add back a minimal amount of gluten free carbs and 2 servings of safe fruits a week to test. Yes all processed sugar a no no for life. Stevia is the only allowed substitute. Yet I am afraid to start up again and be forced to go though withdrawal again.
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Thank you for your post. Very helpful. I can only imagine what you went through. Thank you also about the info on cross contamination.
Yes. I have been Gf for 15 yxears but I am always interested in hearing about new products or tips for preparing Gf foods and where to find places to buy them. In my opinion, celiac disease is simply the culmination of a long term sensitivity to gluten, in that it does not appear overnight. Looking back, I can see that there were many instances where I suffered reactions to gluten, but attributed it to something else. I can see the symptoms in my family as well. My mother was crippled by severe rheumatoid arthritis and my older sister had at least two babies stillborn, and one that died shortly after birth, and she became diabetic later. I had always been rather anemic, had osteoporosis, became hypothyroid, and was diagnosed with “IBS,” at least 25 years ago, because nobody thought to test for gluten. Looking forward to some lively dialogue.
Liked by Teresa, Volunteer Mentor
Yes, I agree. As I look back there were many foods that disagreed with me, beginning with egg. of course, egg is also found in glutenous foods, but as a teen, I did not know what gluten was. Now that I am gluten free, I have had several occasions of eating items with lots of egg in them, and got no reaction of any kind. So now i know it was gluten, not egg that was the real culprit. I too have always been underweight, but since going gluten free, I've gained.
No one in my family has rheumatism, but my grandmother had a history of ulcerative colitis and other GI problems. Now I wonder if she really had celiac disease. Although I was never diagnosed with IBS, I was given lots of antibiotics, which of course, did not help.
I am not a real big fan of baking gluten free, although I have done it. There are magazines that cater to the gluten free diet. Sometimes you can find them at health food stores.
I'm not sure if I'm allowed to give names of magazines out or not. If I am, I will give the title later.
Definitely. This diet has been recommended for my colitis and I am at a loss at how to make it so.
I ended up getting a referral to a nutritionist from my GI doctor and that has really helped. Even after our first meeting when I was in really bad shape, I found useful information and hope. I would recommend asking your doctor for a referral. I was clueless, thinking all I had to avoid was wheat products.
I've followed a gluten free diet for years. Not diagnosed as celiac, but have the symptoms including the shellfish allergic reaction in skin rashes, the intestinal distress, adhesive reactions. It is time for all this to stop. Maybe I missed something and need other help? Perhaps someone else has exhibited similar signs?
I am so glad that you brought up the matter of an appointment with a dietician, @guthealth. I have seen a dietician several times for various GI problems and most recently for a pre-diabetes situation. They are well trained in various health problems and know food and nutrition and can teach about the subject. I would encourage everyone in this group to ask about a referral to a dietician. It can make a world of difference to have that kind of support!
There are many website and Pinterest posts omline to help with a GF diet. One of my favorites is y Nicole Hunn called Gluten Free on a Shoestring. She has been doing this for years and has many tried and true recipes. Otherwise, most meats are gluten free as are most fruits and vegetables.
Been on a GF diet since 12/07/00. 18 years now. Gluten free diets do NOT address the other issues, like adhesive sensitivities. Those ECG patches your MD uses have a gluten based adhesive on them. Those break me out and cause a long lasting rash. Had a prescription for cortisone that caused the exact same reaction. Turns out the filler has shellfish in it and so…no matter what is done it is easy to get exposed.
Walked into a donut shop once to get donuts for work and had a terrible allergic rhinitis attack from the wheat flour in the air.
For my birthday at work the work leader went to the store and got vanilla ice cream and root beer so we had root beer floats instead of cake.
AND I followed Nicole Hunn for a while and did not see any improvement.
I just survive on what I KNOW is gluten free and do well, however it is limited by the imagination of not only myself, but also by those in restaurant kitchens.
Wow, sounds like you've had a tough time of it. Unfortunately there is no "fix" thst works for everyone. I merely offered Nicole as a possible suggestion. Sounds like you've figured out what works for you.
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