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
The main difference is you have to really learn to read food labels. MSG is one of the gluten monsters. I know it is a salt, but guess what it is made from! Glutens. Elmer's glue all is also from glutens.
Don't worry, just eat more vegetables and fruits and avoid most grains. Those are found in breads, cereals, breadings, even the flour McDonald's uses to make their french fries crispy. ANY wheat, rye, barley, spelt, teff, shellfish, sometimes pork, can cause the reactions. Adhesives from those electrodes used in an ECG can trigger the skin reactions.
BUT..the magazine Living Without is a good resource. Pamela's flour mix is good unless you have a nut allergy, then look further. I often use Bob's Red Mill Gluten Free products. I found my mouth salivating when entering a grocery store with an in-store bakery. Took almost 2 solid years for that to stop, guess I was a Pavlov's dog in that manner.
Some frozen vegetables will advertise they are gluten free and OF COURSE they are unless they are grown along side a wheat field and get the drainage water from irrigation.
Some perfumes will set off sneezing and some grains, like alfalfa can trigger allergic reactions that I suspect are part of the host of intolerance.
I hope this helps. It sums up a lie of reading labels, having kids who help me by reading labels.
Sure it sounds miserable, but it takes getting used to.
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Hello, just FYI MSG, while some may react to it, does NOT contain gluten and in fact is not made from it either. Perfectly safe, celiac wise. It is a salt combined with an amino acid. This particular amino acid is one our own bodies makes itself!
Also, the run off from a field of gluten grains getting into a veggie field can't make them contain gluten. How?? I am sorry but that doesn't even make sense.
Anyone who reacts to shellfish or pork as you mention, again this is a completely separate issue. Impossible for those foods to contain gluten as they are meat, which never has gluten. Gluten is plsnt-derived. Now if those items were cross contaminated during food prep or packaging, that's a different thing.
You have provided some very useful info in your post but also some confusing and just plain wrong info too. With respect, please do your research. This gf thing is hard enough for us Celiacs as it is.
It so happens that the particular knowledge you spread here is not necessarily totally correct. When water runs off the plants having glutens in them it brings with it those glutens. Any field of oats planted side-by-side with wheat products will incorporate the glutens.
Pork and shellfish allergies can be suffered by anyone who has gluten problems as well as those who don't. A gluten intolerant/allergic person may also have multiple allergies and pork/shellfish allergies can be a part of the picture.
Your life got far easier when there was greater demand for gluten free foods. Aren't you happy about that?
We shall have to disagree on the gluten somehow coming out of the grain and running with water into crops etc nearby. Processing of other crops like oats planted near wheat crops can result in cross contamination due to shared processing equipment. I get my info on these things from the Canadian Celiac Asscn, which is a very reputable source. They do a lot of research and are up to the minute on all the latest studies and recommendations.
I agree ppl can have allergies as well as autoimmune issues like Celiac, but my comment was more that you made it sound like these things are part of being Celiac when they are not. Just could be confusing for the newbies! You are totally on the money with saying the gf life has gotten easier with all the newly available foods and info! Soooo much better than 10 yrs ago
I’d like to welcome you to Connect, @therjes, and thank you for a very informative first post. @eileena, thank you for your participation in so many discussions–I truly appreciate how you offer great information and support to Connect members.
MSG is gluten-free. Glutamic acid is naturally present in our bodies, and in many foods and food additives–monosodium glutamate (MSG) is the sodium salt of the common amino acid glutamic acid. I was even surprised to learn that MSG occurs naturally in foods, such as tomatoes and cheeses!
However, cross-contamination is a very challenging issue for people who've been diagnosed with celiac disease–many are surprised to learn just how little gluten it actually takes to make them sick. Here are some examples:
– foods cooked in oil where battered foods have been fried
– meat and other food cooked on a grill which is also used for cooking regular food with gluten
– gluten-free pasta that may be cooked in water used for regular pasta, or rice that may be cooked in liquid containing gluten
I’d sincerely encourage you to view the "Gastroenterology & GI Surgery Page" on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ and browse through a few articles and videos by Mayo Clinic experts:
– Tips to Avoid Cross-Contamination in Gluten-Free Foods https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/tips-to-avoid-cross-contamination-in-gluten-free-foods/
–Celiac Disease: Review of Current and Future Recommendations: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/celiac-disease-current-recommendations/
@eileena, @therjes, both of you have raised a noteworthy issue that celiac disease patients often face: Cross-contamination while adhering to a gluten-free (GF) diet. The important point of this conversation is that there is a conversation taking place–even if you don’t agree with everything, I applaud you for your efforts to further the discussion.
Liked by Colleen Young, Connect Director, therjes
@therjes Welcome to Connect. You have come to a good place for sharing valuable information with like-minded people. I wish this forum had been available 12 years ago when my family first began dealing with gluten issues on top of the many food allergies we have had for a lifetime. It has become much easier to find good information about gluten-free foods, but confusion still exists.
@eileena Do you have any research-based information to share showing crops were tested and found to be contaminated in the field with gluten by runoff water? I would be interested to see that, because every time I have seen the claim, it was based on the theory that if plants could be contaminated with pathogens or pesticides from runoff, they could also be contaminated with gluten.
The primary causes of oat contamination are using shared farm equipment or transporting in trucks which carried wheat, that were not adequately cleaned and/or processing in a facility that also processes wheat or barley and is not completely cleaned or storage in bins that are contaminated.
Cross-contamination of frozen vegetables may occur if they are processed in a facility that coats some of their items with flour to prevent sticking together. Wheat coating was a problem in my family's early food allergy days (and we have many among us – some life-threatening) and most manufacturers have stopped using wheat flour or cornstarch for this purpose because of action by food allergy networks and activists. For example, commercial shredded cheese used to be coated with flour as an anti-caking agent, making even nachos unsafe for gluten-free people. The big producers stopped doing this years ago.
In my experience, contamination with gluten and other allergens (a big one for my family is tree nuts) is most likely to occur unintentionally by transfer on food-prep surfaces and utensils. Or by manufacturers who change their recipes and add a dangerous-to-me ingredient without making note of the change on the front of the package. Or by restaurant cooks and servers who think food allergies are "not a real thing." Or by well-meaning friends and relatives who just don't understand a little bit is not OK.
I look forward to hearing more from you about your journey with gluten-sensitivity.
Very interesting – thanks for the info. Jane Brown. Do you have any problems with fruits or vegetables?
@macjane Jane- I have no problems with fruits or vegetables in my gluten-free diet because they do not have gluten – it only occurs in some grains.
People may have issues with some fruits and vegetables but that is not gluten related – it would be a different food allergy or sensitivity. I think when people choose a gluten-free diet in response to health issues, it is often only part of the equation for their health – there may be other food or environmental allergies or sensitivities as well.
When we enter into discussions about what foods cause us a problem as individuals, we must take care to differentiate between foods we react to due to gluten and those which cause reaction due to other allergies or sensitivities.
For example, I avoid most foods with sauces unless I know the exact ingredients because it is the usual source of "hidden" gluten in the form of thickeners or extenders. Some barbecue sauces and many soup bases contain wheat starch or wheat. Soy sauce, unless labelled gluten-free is usually made from wheat. Some canned soups or dried soup mixes may also contain barley, another gluten source. I avoid all of these to avoid a wheat/gluten reaction.
But I am also very allergic to tree nuts (pecans, hazelnuts…) so I religiously read labels – as a result I must forego many gluten-free foods because they contain nut flours in place of wheat. And I shun flavored coffees, creamers and store coffee grinders because nuts/nut oils are often used a flavoring, sometimes without being named – just called "flavoring."
Sorry to be so wordy, but it is so difficult to convince people that food allergies are real, I think we need to be as clear as possible and try to deal in clear-cut facts.
Do you have issues with foods other than wheat/gluten?
Liked by JK, Alumna Mentor
I have been gf for about 10 yrs. Diagnosed with Celiac Disease in 2010. The initial learning curve was steep, I'll grant you that. So many labels to read! We found that the easiest way to eat gf is to just eat real food. Meat. Fruit. Veggies. The processed, high fat, high sugar replacements for gluten foods are mostly kept to a minimum. We have been able to eat very similarly to before my diagnosis, except for eating out. THAT is a huge pain in the ass and takes web searches, phone calls to managers and endless questions asked of servers and their managers. Ugh. The higher-end the restaurant, the more gf they can cook as the chefs have the training and education to understand our condition and cross contamination.
Liked by Kanaaz Pereira, Connect Moderator, JK, Alumna Mentor, imallears
I was happy to read your post because 3 things stood out for me…Eat real food, Eating basically the same way as before the GF “diet” and Read labels. It takes perseverance and research which you have done. As you said, being aware of the fat and sugar content of GF replacements is important due to the preponderance of GF foods on the market. We have a friend with celiac disease who won’t change her way of eating because, frankly, she’s just lazy and can’t be bothered to learn. Consequently she suffers for it.
You are right about the higher end restaurants…they have more GF options and real food and are more open to substitutions. I don’t trust the GF options at chain restaurants and certainly not at fast food places. I would love to see chain restaurants and fast food eateries disappear off the face of this planet and have more small, independent restaurants open in neighborhoods….just the way it was when I was growing up and before the fast food explosion.
However, it is challenging to dine out when you have certain food allergies or a condition like Celiac Disease. I’m guessing you are a lot healthier after 10 years….kudos. I’m going to a so called Italian chain restaurant with my gym class next week because that’s what was decided. I’ve been looking at the menu for 2 days…the caloric and nutritional facts….and can’t come up with anything except a salad. I don’t have any food allergies but one lunch there has more sodium, sugar and trans fat than I would eat in several days…even their “lower calorie” items. The caloric content of some of the specials is what I eat in a day. It ain’t easy.
Liked by Kanaaz Pereira, Connect Moderator
@imallears Hi Mary – Restaurants are a challenge with food allergies, but awareness is so much better now than a few years ago, and I hate to forego a social event, so my solution to eating out in many restaurants is the salad or a plateful of fresh steamed veggies. But to make it a meal, I will call in advance and ask THE MANAGER to determine whether they can safely prepare a broiled, grilled or pan-fried chicken breast, shrimp or small steak to serve with it. I have only been disappointed in their response a very few times.
As for gluten-free options in chains/fast food places, we actually have pretty good experiences. We travel a lot, and NOT eating out is not an option, so we selectively find places and speak directly to the front-end manager or the preparer. We also use an app called "Find Me Gluten-free", which not only helps find the safe places, but also the ones to avoid. As a result, we have done some education and given ourselves more options. We also socialize a lot when home, and have found a number of ethnic restaurants and small family-owned ones that are very accommodating, especially if they know it will bring us back with our group of family or friends (repeat business is their lifeblood.)
As for the nutritional content, you are right – it can be abysmal. Again, the small places preparing from scratch are a great help, because you can ask for minimal or no salt in the prep, and sauces and dressings on the side…
You've done a great job preparing, so I hope you enjoy your day out with your gym group.
Liked by Kanaaz Pereira, Connect Moderator, imallears
Oh man, looking at a menu for days is absolutely right! In fact I am possibly going out for lunch today and I spent last evening doing that. Need to find a place my friend would like that has ANYTHING safe for me. And it ain't easy.
I am healthier but 2 yrs ago my hubbie and I got Fitbits and began tracking what we eat, calorie-wise. That has resulted in a healthier, more fit couple. The gf diet, I think of as my medical treatment for an incurable disease. My dad had colon cancer about 5 yrs ago and has had digestive issues for my whole life. And he's 100 % Irish. So I'm guessing he is an undiagnosed Celiac and it's come from his side. At 81 it seems it won't be what kills him but I have heard many stories from ppl who think a relative did die from it. I consider myself lucky to have finally been diagnosed (took a few yrs for them to ID why my ferratin was always so very low – it was being Celiac).
Anyway, good luck at the chain restaurant!
@sueinmn @therjes I have had a lactose intolerance for a while now, probably triggered by the immunosuppressants I have to take. Recently I have wondered if I may now also have a gluten intolerance. The other day I had a breakfast with nothing dairy in it, but I had a low cal English muffin with it and had a problem afterward.
Are the terms gluten intolerance and celiac disease synonymous?
We went out to dinner last night to one of my favorite restaurants. It is an upscale restaurant and they are great about accommodating dietary restrictions. I told them I am lactose intolerant but I did not mention gluten since I am not yet sure. I doubt there was anything in my dinner that had gluten in it, and thankfully I have not had any reaction. Just trying to stay lactose-free is a challenge. I also have to keep my sodium low!
Hi! No, gluten intolerance and Celiac are NOT the same at all actually. Celiac Disease is an autoimmune disease, like Type 1 Diabetes. It is when your body creates an immune response to gluten, which is the protein in wheat, barley and rye. Your body attacks the villi in your intestines, which allow you to absorb nutrients from food. Gluten intolerance can produce very similar symptoms but the key is no damage is done to the gut. It just feels awful. The only way yo know which you might have is to be tested for Celiac. First s blood test to see if you have elevated tTg antibody levels. If yes, then referral to a GI specialist for a gastroscopy and biopsy of the intestine. This will rule it in or out, based on looking for those damaged villi. A gluten free diet for life is the only treatment. Once you get a diagnosis you will st least know what is happening!
Liked by JK, Alumna Mentor, Ingegerd Enscoe, Volunteer Mentor
Thank you Theresa
Thanks, @therjes I went to a gastroenterologist in the fall, I actually saw his NP. At that time I definitely did not have a problem with gluten, just lactose, but she insisted on doing a test for celiac. I allowed it because she was so insistent and I knew it would prove her wrong, which it did. So, unless celiac has popped up since then, it is if anything simple gluten intolerance. I will be tracking what I eat over the next week to try to determine if I do have a gluten problem.
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