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 am one year into the diagnosis of Celiac Disease and would very much interested in a discussion group.
Jump to this post
Hi Lyndarm, what were your early Celiac Symptoms?
It took a long time to figure out as other things were going on at the same time. When I was 17, I had a severe stomachache in school and had to go home. SInce it happened about an hour after breakfast, we all thought it was breakfast that had bothered me, and I had eaten egg and a waffle. When I was a college freshman I ate some pancakes that were yellow with egg, and the attack that I got about an hour later was so severe that I ended up in the campus hospital. (dizzy, nothing was staying down or staying in me, etc).
That was the worst attack I've had, but I have had multiple run-ins with eggy items (but eggy items always have gluten).
Ten years after that, I ate something with soy sauce and got sick (diarrhea only). I now know that soy sauce has gluten.
Fast forward 20 yrs later and oats started bothering me, I was diagnosed with endometriosis which is a female disease and told to go gluten free (without celiac testing). After 2 years gluten free and for the first time, finding out about celiac, I got curious and wanted to be tested, not knowing I had to be on gluten for an accurate result. However, I did test positive 2 out 3 areas (genes and bloodline).
My dr had told me he had noticed the Irish tend to get it more, and I do have Irish in me. Two years after that test, I decided I wanted to know for sure, and with dr approval went back on gluten, but could only stand it 3 days. So while I will never know for sure if I'm celiac, I have so many things against me including all those reactions as a young adult to what I now know was gluten. I've eaten lots of eggy items since gluten free, and have had no reactions.
Liked by JK, Volunteer Mentor, elle1233
It seems like doing "gluten-free" is something Docs tell people to do when they don't know what else to do. Whether it's celiac or not, sounds like you definitely are gluten intolerant, so at least you know how to help yourself! (it sounds like your test did indicate celiac though). Hope things continue to go well!
Hi guthealth @guthealth,
I have been on gluten free diet for 6+ years due to lots of stomach issues, as well as infections. Dr. started me out on sugar and yeast free diet and I gradually got around to a gluten free diet. When eating anything with wheat in it, I get bloated, nausea and diarrhea. Even though I have not been tested for celiac or other issues, the gluten free seems to work for me. A chiropractor had suggested that I try it many years ago, but I thought it would be so difficult and didn't really believe it would help, but it sure has. My husband likes the recipes and gluten free foods so that makes it easier to follow the diet even thought he does eat a regular diet mostly. It is also fun to experiment with gluten free recipes.
Liked by elle1233
Interesting, baz. It certainly is a story I've heard a lot. I go on any patient forum I can find, because I've found them to be such a valuable resource! I'm new here, but so far liking this one because it seems very active – there are current conversations! Seems like it really isn't even necessary to have a lot of testing if you've already found something that helps you – go with what works!
I do find it interesting that there seem to be a lot more people who have problems with wheat/wheat products particularly, people who do not have celiac disease. One theory I've read, that seems plausible is that there is that wheat is processed using a chemical called glyphosate, the same chemical found in Round Up and pesticides, i.e. a poison. I'll try to remember to post it when I'm allowed to post links, but there is really good paper (and others) published in 2013 that discussed the great rise in celiac like symptoms and the use of glyphosate. Of course, I just read another paper criticizing the conclusions of these authors, but it seemed to be more about some other conclusions they were making, not with the GI issues. Anyway, the overall theory is that it is the glyphosate that people are reacting to, not the gluten (which is a particular protein in wheat and other substances). That is why many people test negative for celiac disease but still seem to have problems with wheat etc. On a practical level, it doesn't matter; if eating certain substances makes people sick, and not eating them helps, the mechanism doesn't matter – do what helps.
On a larger population level scale, it does matter. It's hard to argue with the clear data that the rise in patients with gluten/wheat intolerance and use of Round Up are correlated. On the other hand, correlation doesn't imply causation, however there are a lot of theoretical reasons why glyphosate could be toxic, yet food industries in the US and other countries continue to use it more and more. Interestingly, it is also being used to "cure" (I'm not sure what that means, but anyway) sugar cane, so used in the processing of sugar. And, while it is anecdotal, I read about a lot of people having problems with sugar and wheat. And sugar doesn't contain gluten.
Bottom line is I think the best we can do is 'experiment' on ourselves, and do what seems to help. A second theme I've noticed is that sometimes you have to do this despite being told it won't help, or you don't have the right disease, or a test doesn't show you having the right problem. I have been reading another thread here, where a person had a negative test for fructose intolerance, but found eliminating this from her diet made her feel dramatically better.
Anyway, this was a long diatribe, but I find this diet dilemma very interesting, and like to hear people's stories. I have tried gluten free, but probably not long enough to be able to tell if it made a difference. I'm basically tired (maybe lazy) and not very disciplined; but it's beginning to look like diet is about the only thing left that I can manipulate to try to feel better. However, I don't have diarrhea, and it seems that is a symptom that most with gluten intolerance have. Thanks for sharing your experience (and to all the others that have also)
I realized in my most recent post, I talked about oats starting to bother me, but then never talked about my conclusions concerning oats.
I just went off eating oats, but after several years i began missing my morning bowl of oatmeal and determined to find a conclusion.
I tried different types, even gluten free oats, but to no avail. I also discovered that since oats are naturally gluten free, that they are called gluten free, but many oats are processed with wheat items. Then one day I bought organic granola made with organic oats and noothing happened.
Then I also started hearing about Roundup being used on our grains, and thought maybe that's why oats bothered me, especially since organic (which do not use pesticides) did not bother me. i also read that it had been used about 15 years before it was made publlic. I did the math, and it was approximately 15 years ago that oats started bothering me-hmmm! now I really wonder. But I have also read that many celiacs cannot tolerate oats.
However I have discovered a specific type of oats called Purity Protocol that are organic and truly gluten free. They are grown in certified wheat free fields and harvested and processed on wheat free equipment. I have eaten them for 6 months now with no problems.
Wow – that is fascinating, airey, and well; certainly does give credence to the theory about glyphosate! One researcher I do follow (from MIT, who I really think is on to something, recommends eating organic if you are going to do fruits and vegetables, etc.
That is interesting about the oats. I was going to bring that up, but my previous post was already long. Not only sugar, but now it seems like a lot of people have trouble with oat products, which are supposed to be gluten free.
One thing that makes sense to me is that Celiacs, or people with GI issues, might be more sensitive to the glyphosate (the particular chemical in the round up), than people with hardier digestive tracts. But also, as you say, if the oats are being contaminated with wheat products, that could also be a problem. Geez, who knew you had to be so careful about where your food was coming from. That sure is interesting with the time frame for you though. It sure makes me angry that our government (and not just ours) is deeming this chemical "safe" and allowing it's use when I personally believe (I try to be careful because I have no proof), it is making a lot of people sick. People focus on things like cancer, of course, because that kills people and is dramatic, but I think it could be contributing to a lot of these chronic GI problems that seem to be a lot more common.
I only knew of it in terms of pesticides, so thought organic produce would help, but had no idea it was used in processing of wheat, oats, and sugar cane. And that's what I know about.. lord knows what else. The scary thing (and I have to go back to all my papers and notes), is that what makes glyphosate such a bad poison (and good insecticide), is that in mimics an amino acid, so we digest it, and incorporate this "bad" version into our own proteins, and it becomes part of us, potentially altering things. So the damage can be more long lasting, because long after you stop it, it is in your "system".
Thanks for the oatmeal rec. I have balked about having to spend more money on organic and more trustworthy food sources, but seems like it is worth it in the long run.. you'll spend a lot more money on doctors and medical tests trying to figure out what is wrong with you!
Liked by JK, Volunteer Mentor
Just found this discussion. About five or six years ago after I retired I changed my eating habits after I started reading about food, it’s effect on your body and well being and where some foods come from. I was never overweight, am blessed with good health and have no organic problems. I decided to eliminate white flour as much as I could and lower my carb intake. . A couple of years down the road I realized I had embraced a lot of the gluten free lifestyle. My goal was to eat as naturally as I could, eat whole foods , no processed foods, no canned foods and I became a big label reader and eliminated a few “low fat” items in my diet. My daughter,, at the same time, was following the same path and is passionate about nutrition. I lost 10 pounds without meaning to do so and some of the belly fat all women seem to have.
I love eating and love to cook and tell people constantly how to lose that belly fat if they ask. When I was pregnant with my 2 children over 50 years ago, my doctor (who delivered my children) told me to go on this exact same diet. I did what he said and gained exactly 17 pounds with each child.
I am not entirely gluten free but I think it’s a fantastic way to eat for everyone. I bake with almond and coconut flours when I do bake and found it is easy to make breakfast muffins with no sugar.
Reading labels and knowing where your food is sourced is critical for our health. There are so many phony “natural” foods, low fat junk and additives on the supermarket shelves. Healthy eating requires research, something people are not inclined to do unless there is s health problem. So many medical problems are related to food and we are constantly undermined by the Food and Drug administration, big Pharmaceutical companies and all the special interest groups out there with their biased research (funded by special interest groups).
We are the only species on this planet that does not regulate their food intake…us and the poor animals we feed. It ain’t easy folks! But it gets easier and more enjoyable over time.
I ate better as a child because there were no fast foods and my mom shopped at the local markets for fresh meat and vegetables. My children ate better when I was raising them…there were very few fast food places available. My grandchildren are bombarded with tv ads and fast food places.
So today, I am 78, feel stronger and healthier, have perfect blood panels, take no prescription drugs, exercise and just enjoy living. I also have good genes…so important. I don’t deprive myself so , if I want a pizza, I’ll have one. I am not bragging but I have personally seen the dramatic effect of diet change in a few close friends and family.
Again, gluten free is such a good start for everyone.
Regards from FL Mary (and yes we dodged this hurricane this time)
I just got the call from dermatologist- not skin lymphoma but Grover’s. I have been gf. No meat eggs fish chicken I cheat w dairy— I dont know what foods changed diet can help I also have tons of allergies— I have acquired after post menopause I am clue less but great ful for this site
I’m looking for support – I read cilantro helps – I’m allergic
Maybe we can support one another
There is a terrific support group on this site specifically for those of us with Grover's. LOTS of information, remedies to try and support. I have had GD for a year now. Cilantro helped me but did not make it go away completely. However, there are others it did not help at all. So they have offered other remedies that have eased the itch and rash.
Liked by imallears
@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?
It does get easier over time, but I don't think I will ever get over the jitters whenever I eat out (unless it is a trusted restaurant) or when I eat at a friends. The first time I ate at a friends, was a lady who loved to cook and who knew I was gluten free. To make it easier for her, I brought my ingredients for her to use. For whatever reason, she did not want to use my ingredients, she bought her own. They were gluten free, but they also had flax in them, and flax makes me just as sick as gluten. Needless to say, her food did not go over well with me. Now I've learned to eat a bit before going to a friend's house, then I can say "I'm not very hungry."
Another time, I was going to travel. I did my research and picked restaurants that advertised they were gluten free or had a gluten free menu on their websites. However, when I arrived I found out that one of the restaurants was not really gluten free. Needless to say I was mad and they lost my business. My most trusted restaurants are any Mexican restaurant (and the South is full of them), plus Jasons Deli and certain foods at Chick-fil-a. They are my trusted ones that I've never had problems with.
Has anyone had phototherapy
Thank you sooo
Doc recommended phototherapy
I’m curious why you mentioned that Mexican restaurants are “trusted” to be gluten free. What menu items do you order? I know that they often use corn products instead of wheat but certainly any burritos would be
no no’s since they are made with wheat flour tortillas. And I wouldn’t trust some of the sauces.
Because corn tortillas are used in most true Mexican restaurants (not always Tex-Mex style). The ones i eat at say what tortillas they use for the items and those are the ones I get. Tacos are always corn tortillas, flautos are corn tortilllas, enchiladas often (not always). I eat at them often enough that I've learned what dishes are made with what tortillas And they always come with refried beans and rice (both are always safe no matter where I eat). I never eat the chips and salsa appetizer because i don't want to ruin my appetite for the main meals. I'm talking about the sit-down style of Mexican restaurants being more trustworthy than the fast food style.
version 188.8.131.52.9Page loaded in 1.673 seconds