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  • With Mayo Clinic nutritionists

    Jennifer Nelson, M.S., R.D. and Katherine Zeratsky, R.D.

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  • Nutrition-wise blog

  • Jan. 11, 2011

    Going gluten-free: Reflections on what works

    By Jennifer Nelson, M.S., R.D. and Katherine Zeratsky, R.D.

85 comments posted

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Celiac disease is a potentially fatal condition triggered by eating the protein gluten that is found in wheat, rye and barley (and any food or ingredient that has even miniscule amounts of these grains). Eating gluten causes an immune reaction and damage to the small intestine, leading to abdominal pain, diarrhea and weight loss. Essential nutrients are not absorbed, which leads to a host of deficiencies including anemia, osteoporosis, infertility, skin rashes, joint pain and even certain cancers. Undiagnosed and untreated, celiac disease quadruples the risk of death. Treatment is avoiding anything with gluten.

It's hard to believe that it's been 10 years since my husband was diagnosed with celiac disease. He has carefully followed a gluten-free diet and has thrived. I asked my husband what has helped him be successful with this life-changing disease.

Q: What did you think when you were diagnosed?

A: I was relieved. I thought I was lucky that I had a disease that I could do something about and that I could live a long time. What was really important was that I took responsibility for deciding what I'd purchase and put into my mouth. This forced me to take charge — and it gave me confidence that I could do it.

Q: What steps did you take to become gluten-free?

A: I tried to learn as much about the diet as possible. There are resources including websites and celiac disease support groups that provide lists of manufacturers who make gluten-free foods including brand names of items. We also opted to make our kitchen gluten-free. This made me feel safe — that I could eat anything at home without thinking too much about it. (Note: Not all families may decide to do this. It may be more practical to designate which cupboards or part of the refrigerator is gluten-free.)

I looked hard for and found good-tasting everyday foods (breads, crackers, pasta). I especially like rice crackers and pasta — they're even less expensive than the wheat-containing ones. It took a while to find gluten-free bread that had good taste and texture. Over the years food manufacturers have really come through with great gluten-free products.

Q: What remains a challenge?

A: Eating out. I don't like having to work through the menu with waiters and chefs to determine what might be gluten-free. You also wonder if all ingredients used are gluten-free, you wonder if the food is cooked and handled so there is no cross-contamination. It's also no fun when food is made so plainly that there is no taste. What is a joy is to find restaurants that have taken training and become certified gluten-free.

I'm also concerned about a recent study that showed cross contamination of naturally gluten-free grains. Of the 22 grains samples that are assumed to be naturally gluten-free, 7 contained gluten at levels higher that the proposed Food and Drug Administration cut-off. Our food supply — every step of the way from farm to table — is complex. We need to find out where cross contamination occurs.

I'm looking forward to the FDA releasing federal standards for labeling foods gluten-free. Currently it's voluntary for food companies to test their foods for presence of gluten, and they don't have to take cross contamination into account.

Q: Anything else?

A: It's amazing how quickly I felt better going gluten-free. I felt better in less than a week — and I still feel great.

If you have celiac disease — or any other medical condition treated by diet — what has worked for you? Share your thoughts.

- Jennifer

85 comments posted

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  • April 26, 2013 11:47 a.m.

    A very good friend of mine was diagnosed with Celiac disease about a year ago. Since going gluten free, she has lost over 140 pounds (she weighed 250 starting up) and her husband, who weighed over 400 pounds and went on the gluten free diet out of support for her has lost 180 pounds. They both act so different from before; active, energetic, and even friendlier. When I commented on this she replied it was hard to even pretend to want to be involved in relationships/activities when all you can think about is hurrying to get home so you can go to bed. Just wanted to share that there are benefits beyond just not feeling sick all the time so hang in there gang. Prayers and best wishes.

    - Donna

  • April 3, 2013 4:58 p.m.

    If you have a Trader Joe's store nearby, they carry GF corn or rice pasta (rotini, spaghetti, and penne), & hard taco shells. Also a good 3-cheese & tomato frozen pizza, 8-pk frozen waffles and pancakes. I use the waffles ($1.99) as toast, waffles, or a strawberry "shortcake" base. Also carry TJ brand GF all purpose flour ($3.99/bag). Made good muffins. I use small GF corn tortillas as bread and to make my own chips/crackers. Quick spray with cooking oil and sprinkle with either sea salt or cinnamon/splenda mix. I put 6 on a cookie sheet and Bake at 350 for @13 min. Can be cut into wedges first, but I use them whole and break them apart when eating. Lots of crunch and very light. Recently found GF "Poptillas" at Big Lots. Plain or nacho cheese are good. Some dressings, like Ken's Lt. Ranch are GF. I am also supposed to avoid high fructose corn syrup, honey, soy products, and lactose. Doing much better, but still have issues. Start with GF and read labels for everything else I need to omit.

    - Chris

  • January 25, 2013 12:02 p.m.

    Reading these posts are so interesting. If have been mostly gf for almost a month. Christmas Day I was in bed all day with horrible migraine. A couple days later my physical therapist noted a possible connection with gluten. Fortunately my daughter is a registered dietician so has been helping me follow a gf diet. When gluten sneaks in I notice a headache so am learning to be more careful. This past month has been better than the previous months!

    - Evie

  • November 20, 2012 6:54 a.m.

    I've never been tested but I know I'm gluten intolerant and have been gluten free for a few years. Don't be fooled by having physical symptoms. I have a relative that tested positive for celiac and her only symptoms were severe depression. I'm liking the new bread from Brownberry called Good-bye Gluten - the white bread can even be used to make regular sandwiches and they're not dry.

    - Trudy

  • October 12, 2012 10:57 a.m.

    If you are weak and sick often be sure to check your gammaglobulin levels to make sure you are not immune deficient. Low IgA will affect the intestines, and low levels in general affect health and energy. www.primaryimmune.org

    - Chuck

  • September 14, 2012 10:20 a.m.

    I am type 2 diabetes and my doctor wants me to go on a gluten free diet to help my insulin production. Has anyone tried this diet for diabetes?

    - Connie

  • August 19, 2012 8:23 p.m.

    is coca cola considered gluten free

    - norma

  • July 5, 2012 9:29 p.m.

    The best bread that I have found is 7-Grain Bread from Canyon Bakehouse. It is Gluten-Free, Dairy-Free, Nut-Free, and Soy-Free. They also have Hamburger Buns, (just had my first real hamburger in two years!) and many other great things. www.canyonbakehouse.com

    - Pat

  • July 4, 2012 8:01 a.m.

    RE: Gluten free bread, the best I have found is a Canadian product, Glutenia Corn Bread, spelling may be off a little, this is a white frozen bread in the high end grocery stores, especially. I keep it in the freezer, and ease off slices, micro-wave wrapped in paper towels, then eat as fresh or toast or whatever. Note, even Campbells tomato soup has flour!

    - Eva

  • June 28, 2012 3:45 a.m.

    Response for MAGGIE: I had suffered for years with a similar skin condition. I finally found a product that really works! It's a non-greasy ointment called EMUAID and my skin started to improve within a day. I bought mine on the website: www.emuaid.com (It's $49 but worth every cent). Good luck!

    - Julie

  • June 21, 2012 11:06 p.m.

    Does anyone have any info. regarding Celiac and Dermatious Heperformis(I have been suffering from skin rashes and blisters since 9/11.) I have been to at least 10 doctors and have tried all creams and steriods.Any help would be greatly appreciated.

    - Maggie

  • May 30, 2012 7:19 p.m.

    Some of the comments here, especially from Elizabeth and Nat, make me wonder if your problems really are gluten-related or perhaps food allergies-or both. Something to consider if you continue to be weak is adrenal fatigue; food/environmental allergies are almost always linked to weak adrenals. Adrenals affect our entire body - basic body rhythms, metabolism, heart rate, hormones, etc. Something easy to try would be a good adrenal supplement, probably a therapeutic dose rather than maintenance dose. Enzymatic Therapies makes a couple of good ones. If you can find someone who's knowledgable about NAET/acupuncture or accupressure (probably chiropractor or alternative healthcare provider) they can every effectively treat allergies and reduce your sensitivities. Also, to reduce overall inflammation in the body start gently detoxing the liver. The juice of half a fresh lemon in a cup of very warm water FIRST thing in the morning will help greatly. You can also take a tincture of yellowdock/ milk thistle. Gaia makes a good one. For the liver you can also try a more aggressive gall bladder/liver cleanse with epsom salts/olive oil/lemon juice. Something similar that's less aggressive is 1 teaspoon to 1 tablespoon of good quality olive oil mixed with same amount of lemon juice. Take just before bed, sleep on right side as much as possible. Will help to flush the liver/gall bladder=energy. Just take it easy with liver detox and don't try to do too much too quickly.

    - Bella

  • May 30, 2012 12:35 p.m.

    I would like to know what bread you found to be the best tasting in the Gluten free world?

    - Sharon

  • May 15, 2012 8:15 p.m.

    I am waiting for blood results to see if I have celiac. I have had lower intestine pain for years. It feels like my intestines are inflamed. I have not been myself, very exhausted and no energy. I am just starting gluten free and lactose free......what if my result in negative...Could this still be my problem...

    - Jo

  • May 7, 2012 3:18 a.m.

    I have been diagnosed with sero-negative rheumatoid arthritis and other auto-immune disease symptoms. My chiropractor advised me to go off gluten, dairy and lactose for a period of 3 months to see if there was any difference in my symptoms. Within 3 weeks of doing this, I noticed that my dry eyes had hugely improved to the point that I only needed about half the lubrication that I did before, so from 10 lots of drops per day, down to 5. Also, my eyesight improved as documented by an optometrist and opthalmologist. They say that dry eyes from auto-immune disease never get better, only worse. They were surprised at the improvement in my eyes. Also, the knee with the RA in, improved significantly. I attribute the improvements in my health directly to excluding gluten, dairy and lactose. Three or 4 times since following this diet for the past 6 months, I weakened and had coffee with milk and the next day I woke up with a migraine.

    - Linda

  • April 7, 2012 4:07 p.m.

    tell nat that there is glutem in everything it seems. only eat mccormick spices for instance other pepper etc has preservatives call all the company numbers on all the things you eat

    - donna

  • April 7, 2012 4:01 p.m.

    5 years into trying to be gluten free I still am surprised Did you know that mcdonalds coffee cream has preservatives and other creamers. also diet coke not from the soda bottle such as in a bar made me sick I have found many great foods but still learning

    - donna

  • April 6, 2012 9:10 p.m.

    Nat, have you been tested for Vitamin D deficiency or other vitamin deficiencies? Also the older you are, the longer it can take to heal your digestive tract.

    - Tara

  • March 28, 2012 5:27 a.m.

    Last year I was getting sicker and sicker. I was tired to the point I could not work anymore. My doctor suggested going gluten free. About two weeks after I became gluten free, I also became lactose intolerant, then I started having grain and legume sensitivities. I would get sick even on gluten free foods. The only food that would not bother me were vegetables, meats/fish and fruit. I could not eat anything else. My doctor suggested gastroscopy. I had a bleeding gastric erosion. He prescribed PPI (Prilosec). After being on Prilosec for 3 months I felt much worse - fatigue and tired all the time. I discontinued taking it. I am taking probiotics, and I am feeling somewhat better, but I am still very weak. Reading all other comments about how people felt better right away on a gluten free diet makes me wonder. If there is anything I am not doing that is making me sick? My house is totally gluten free and I am not ingesting any gluten, but... why am I still not normal self? I would welcome any suggestions. Thank you.

    - Nat

  • March 26, 2012 10:33 a.m.

    I am a gastroenterologist and always suffered from bean intolerance but could eat bread etc items with gluthen without apparent symptoms. As I approached sixty I started to consume an artificial wheat protein marketed as Guten which is really concentrated gluthen. This lead to diarrhea and steatorrhea suffice it to say I diagnosed myself with Caeliac disease. I then proceeded to try to avoid gluthen which living in Guatemala was difficult because of cross contamination and poor documentation of contents in packaging. Interestingly when inadventently consuming Gluthen I noticed some "dizziness" at times also sleep disturbances and psychiatric inbalances. All of which corrected when on a strict Gluthen free diet. Additionally the bean intolerance totally corected itself which leads me to believe that I always had some degree of intestinal damage from wheat comsumption without being aware. I would recommend anyone having food intolerances especially bean etc to undergo exclusion of Caeliac disease as a primary disorder. Additionally ataxia, sleep, psychiatric disorders may alllso be secondary to GSE. Must go bye.

    - nicolas

  • March 4, 2012 11:26 a.m.

    Thank you everyone for the useful information and tips. Have just been diagnosed. Long road ahead. Hoping to learn what "normal" is. Also Celiac disease can be hereditary. Strongly suggest other family members having blood test to find out.

    - gena

  • March 4, 2012 6:34 a.m.

    I had been having problem on my palment when I was eating items with gluten and also having stomach problem. After a test I came to know about the decease and also read about this on this site. I feel better now. Now the only problem is I cannot eat out in Hotel

    - Ranvir

  • February 28, 2012 8:11 a.m.

    Just recently diagnosed. Glad I came accross this post. I have been eating gluten free products for the past week, my tummy feels better already, no bloating. I also have low blood count which is why I was diagnosed so I presume it will take some time to recover this, I will keep you posted.

    - Jacinta

  • February 26, 2012 2:17 p.m.

    You can have a HIDDEN celiac/ ask your doctor about this issue. My test came back negative, but he talked to me about having a hidden celiac. Each and everytime I would eat something that was not on a G free diet, I bloated, could go for days and not use the restroom. To the point where my students asked me..... if i was pregnant. The stress of not knowing is hard. Try to get tested. You will see right away if you feel better. It is costly on some of the G- Free products.. so make you money go far!

    - lea

  • February 26, 2012 2:08 p.m.

    I feel thankful to have read this information G-Free foods and diet information. I am eating a low carb diet due to my dropping the extra weight, and becoming more aware of all the foods I can eat, and those foods I can not eat. I think if you have stomach issues, please get tested for Celiac issues. The only issue i have found is the G-Free taste like poop ! Someone tell me the best brand!!!

    - lea

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