Going Gluten-FreeJune 13, 2012

Are You Gluten Free and Still Feeling Sick?

Are you a gluten-free celiac who still feels sick? A recently published study* conducted by researchers at St. Thomas’ Hospital in London looked into this very question. Over an 18-month period, they investigated 112 patients diagnosed with non-responsive celiac disease. They wanted to determine why these patients continued to have persistent symptoms even though they were on the gluten-free diet.

The patients were first seen in clinic where a thorough history and examination were performed with routine blood work, including tissue transglutaminase antibody measurement. They were also referred to a specialist gastroenterology dietician to try to identity any lapses in the diet and sources of hidden gluten ingestion. A repeat small intestinal biopsy was also performed and compared to biopsies from the referring hospital where possible. Colonoscopy, lactulose hydrogen breath testing, pancreolauryl testing and computed tomography scan of the abdomen were undertaken if the symptoms persisted.

Of the 112 patients in the study, 12 were found not to have celiac disease. Of the remaining 100 patients, 45 percent were not adequately adhering to a strict gluten-free diet, with 24 (53 percent) found to be inadvertently ingesting gluten and 21 (47 percent) admitting non-compliance. Microscopic colitis was diagnosed in 12 percent and small bowel bacterial overgrowth in 9 percent. Refractory celiac disease was diagnosed in 9 percent; 3 of these were diagnosed with intestinal lymphoma. After 2 years, 78 patients remained well, 8 had continuing symptoms and 4 had died.

The researchers concluded that there was a remedial cause for persistent symptoms in 90 percent of the individuals with non-responsive celiac disease. The leading cause was continued gluten ingestion.

Are you discouraged that your recovery is slower than you had hoped? According to “Celiac Disease, Myth-Busting Answers to Your Questions about Life Without Gluten,” by Rory Jones (Living Without, April/May 2012), there are several areas to explore:

  • You may not be giving yourself enough time to heal. Typically, children show a fairly rapid and dramatic improvement on the diet. Adults may require much more time for the inflammatory process to subside.
  • You may have an associated medical complication, such as bacterial overgrowth or pancreatic insufficiency, which requires treatment. Similarly, people who are severely malnourished when diagnosed may require extended nutritional therapy to regain their strength and health.
  • You may have a concurrent food intolerance or medical condition. It’s not uncommon for those with celiac disease to have lactose intolerance, additional food sensitivities or other illnesses causing symptoms.
  • You may have been misdiagnosed, in which case the gluten-free diet is not the answer to your problems.

As this study revealed, however, the most common reason for not getting better is that you may be inadvertently eating gluten.

All these areas underscore the importance of proper medical and dietary diagnosis and management when dealing with celiac disease and the gluten-free diet.

Are you gluten free and still feeling sick?

Source: World J Gastroenterol. 2012 Mar 28;18(12):1348-56.

Comments (5)

I have been gluten free for about 5 years. I keep having digestive issues and find that soy, citrus, chocolate, and dairy are triggers, but only if I have them in quantity or even small quantities over time. I can't seem to find what will make me feel "normal" but have found that probiotics and Kombucha tea helps a lot! WARNING- If you are extremely sensitive to alcohol, ask your doctor before doing this. There is a small amount that is created in the fermentation. *It is expensive in the stores, but I can brew it very cheaply. 3 qts of boiling water + 1 cup of sugar. Stir til dissolved and add 4 teabags, Brew 5-10 min and remove the tea bags. Cool to room temp. Pour into a sterilized jar with a wide mouth. Add 1-2 cups of Kombucha and put in a SCOBY(a mushroom like thing that is used to ferment the Kombucha.) Cover it with a cloth and put a rubber band around it to keep insects out. (Fruit flies love it!) Put it in a dark spot in your kitchen, like inside a cupboard, and wait for 2-4 weeks. It gets a vinegar-y smell and may have tiny champagne like bubbles. You can then bottle it in sterile jars. You can add 2 Tbs of Chia seeds per bottle,and you can flavor it with an ounce of fruit juice or so per bottle. (I like Vernors gingerale or fruit juices with it.)Seal the jars/bottles and keep it in the fridge once you have stopped fermenting it.

Drink about 6 ounces or more a day.

Tip: If you do not have a SCOBY, don't bother buying it from the internet for $12 or so. Instead, sterilize a 1 qt jar, boil 2 cups of water and add 2 Tbs sugar. Stir it til it dissolves and add a teabag. Let it brew for 5-10 minutes and pour in 8 oz of plain unflavored Kombucha that you have purchased from the store. Cover the top with a piece of cloth or a coffee filter and let it stand for 2 weeks til you see a growth at the top of the jar that looks like a pancake. Use this to make your big jar of kombucha.

The sugar is fermented out so there is almost no sugar left. There ARE many probiotics. It helps heal the gut and make it more resistant to insults like gluten or dairy.

Posted by: Unknown | January 3, 2013 3:52 PM    Report this comment

I posted as unknown the first time. @ mama, I also eat watermelon on a daily basis and squash is one of my main staples. I don't take vitamins because they really bother my stomach but I am so deficient in D that I take it once every other week it's a high dose 50,000 IU's. I have been on Prilosec, Nexium, Protonix, Dexilant etc all the newest drugs that have come out and I am done trying them. They work for a short time then stop. I've read they are not for long term use and my Dr's have had me on them for yrs! I have serious bone density issues and that seems to be the side effect of taking these drugs. I do take a liquid antacid before I eat and at bedtime it seems to help some of the time. I also eat a very blan diet. @ Allison, I did a little research on the SCD diet and there are things on it that I can't eat so I'm not sure it would benefit me. Though I am open to all suggestions at this point so I will probably buy the book and look into it further. Thanks for sharing. Good luck to you both and if you find anything helpful please post.

Posted by: bratkat90210 | June 17, 2012 1:32 PM    Report this comment

I have been gluten free for 5 years however I only recently started to feel better. I have had to eliminate almost all carbs. I cannot tolerate rice unless it is in its flour form. I have given up all beans and lentils as they cause excruciating gas and bloating. I have also given up most vegetables especially those from the nightshade family. I can have all varieties of squash, carrots, spinach(raw and cooked), avacodoes and asparagus. I can have most fruits except citrus and apples need to be cooked. This has been a lengthy process to figure out what I can and cannot have. I have had NO help from doctors and am still waiting to see a dietician as I am concerned about my (lack of) nutrient intake. I take vitamins however they cause stomach upset as well even though they are gluten free. I am waiting for a referal to a specialist but who knows when I will get in. When I was at my worst I followed the specific carbohydrate diet, with a few more eliminations, it made a world of difference for me. I eat squash and watermelon everyday and if I skip them my stomach bothers me. My diet is bland however I feel better, sleep better and am starting to regain some of my lost energy.

Posted by: mama shenton | June 14, 2012 7:01 PM    Report this comment

I also have had horrendous GERD. I tried eliminating all the usual suspects: coffee, citrus, chocolate, tomatoes with no luck. Today I am 90% better with NO prilosec, NO maalox, No tums! I have been using the Specific Carbohydrate Diet (not following the stages just using the legal list of foods.) I cannot recommend this highly enough!!! Basically, it is sugar free, starch free, grain free. I NEVER thought I could give up sugar (honey is allowed) and the other grains I have enjoyed since going gluten free 5 years ago. But I keep telling myself that I can slowly add back in a few favorites once I am completely heartburn free. People ask me what in the world I eat (same question we hear regarding GF, right?) I eat lots of fruits and vegetables, lean meats, eggs, many kinds of cheese, lentils, olives, coconut, nuts and nut butters/flours. Believe me there are plenty of options. Maybe this would work for you too. I was desperate enough to give it a try and I feel better than I can ever remember!

Posted by: Allison K | June 14, 2012 2:23 PM    Report this comment

I was diagnosed with gluten sensitivity and have followed a strict gluten free diet for several months now and still have symptoms on a daily basis. The GERD I experience is so bad it is really making my life miserable. I have also eliminated tomatoes, garlic, onions, vinegar, citrus and anything acidic. I am 55 yrs old 5'2" tall and weigh 103 lbs. I lost close to 20 lbs 2 yrs ago when this all started to get worse without trying to lose weight. I don't know what to eat anymore! I was diagnosed with CFS/FMS/IBS years ago but my fatigue and everything is worse than it's ever been. I have also had GERD for yrs but not to this extent. I don't believe western medicine has the answers for some of us. I think all the chemicals and pesticides in our food supply and environment are making some of us very sick. I just think some of us are more sensitive to these toxins then others. I believe we have the right to know WHERE the things we eat were grown and HOW they were grown. There needs to be a detailed list of ingredients that people understand. Things need to be labeled GMO if it has been modified. We are poisoning our planet and I hate to think what future generations will suffer.

Posted by: bratkat90210 | June 14, 2012 2:04 PM    Report this comment

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