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Additional Recommendations to Help You Make a Full Recovery from Celiac Disease

Celiac.com 01/11/2005 - After being diagnosed with celiac disease and going on a 100% gluten-free diet, make sure your doctor:
  • Tests your bone density (osteoporosis is more likely in those with untreated celiac disease);
  • Tests your blood for iron and folate deficiencies;
  • Vaccinates you for pneumococcal disease (serious infections are common in immune-stressed individuals. This step will vary with your overall condition upon diagnosis and may not be necessary).

Other recommendations for initial management of celiac disease:

  • Referral to a dietitian and support group;
  • Ensure all regular medications are gluten-free;
  • If osteoporosis is found, assess vitamin D and parathyroid hormone concentrations;
  • Blood screening of your parents, children, brothers and sisters for celiac disease.
  • Check the Diseases and Disorders Associated with Celiac Disease section of Celiac.com and if you have any other health problems listed in that section be sure to discuss this with your doctor.

Many people with celiac disease have additional food intolerance, and therefore never fully recover on a gluten-free diet alone. If you fall into this category try the following:

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  • Re-check your diet and make sure it is 100% gluten-free;
  • Food allergy testing (finger-stick or ELISA);
  • An elimination diet;
  • Keep a food diary;
  • Try a rotation diet--only eating the top food allergens once every few days. The most common additional food intolerance are: Cows milk, corn, soy and eggs.

Many people who have had difficulty recovering from celiac disease have found that maintaining a "paleo" perspective which favors unprocessed meats, vegetables, and fruits while avoiding all grains, is the final step necessary for a complete recovery.

For more information on this topic the Winter 2005 edition of Scott-Free Newsletter has an excellent article: Putting the Pieces Back Together by Roy S. Jamron, which is available on-line to all subscribers. A special thanks to Ron Hoggan for providing me with some of the information that appears in this article.

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3 Responses:

 
Valerie Kluss
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said this on
09 Aug 2008 9:39:22 AM PDT
I am SO glad to see something about the paleolithic diet on your website. My celiac disease did improve with eliminating wheat, barley, rye, and oats, but I was still pretty sick. Next went milk and eggs. Still sick. Next went corn and rice. Still sick. Finally, ALL legumes and potatoes. Great breakthrough. Celiac disease takes 3-5 years to recover from and I'm 1 1/2 years in. My comfort level is much higher on the paleolithic diet.

 
Dav
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said this on
09 Sep 2010 6:48:14 AM PDT
I have had celiac disease for 8 1/2 years. At 1st I was vomiting and running to the toilet when I ate something containing gluten. I've been following a gluten free diet since. But in the last couple of weeks I've been having cravings for gluten foods.
It started off with some fresh doughnuts when my husband took me to Blackpool a couple of weeks ago, then some crispy creams, followed by jam dough nuts, chocolate éclairs - not all on the same day! Today I've had a double cheese burger meal from McDonald's. I've not been sick yet, or the runs!

Does that mean I've not got celiac disease any more?

I've made a doctors appointment for next week to be on the safe side.

 
admin
( Author)
said this on
10 Sep 2010 1:39:15 PM PDT
Hello Dav,

This is fairly normal, but it does not mean that you no longer have celiac disease. If you continue down this path it is likely that you could end up with intestinal damage or other more serious health issues which could take years to heal, or worse...more permanent issues.




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Just recently diagnosed and wondering has anyone else experienced constant benching/gas, chest burning, and constipation??

and once that's happened if results are negative please do properly trial the gluten free diet regardless. So much of what you've posted suggests you're on the right track with this, results notwithstanding. Good luck!

Hi Galaxy, This does not mean that you don't have celiac. You need a full panel done. I only test positive on the DGP IgA test. You still need tTG IgG, DGP IgA, DGP IgG and EMA. Ask your Dr to order the rest? Do keep eating gluten until all testing is complete and definitely keep advocating for yourself! You deserve to feel good!! ((((((Hugs))))))

HI all. Blood, genetic and 3 biopsies diagnosed Celiac 2007. Spent 10 years on elimination diet of 9 foods to have stable colon and CRP. Never had bad Celiac numbers and my weight dropped 90 lbs from inflamation under control. Great cholesterol. Last two years have been adding foods. Last summer developed sharp pain in right flank, severe. After ultrasounds and MRI no diagnosis. Three back to back bladder infections and high CRP, Westergreen and Cholesterol later I went back to elimination diet for 30 days. Hard with food and starvation fear. Blood perfect again. Just wanted to share that obviously some food I added took me down hard. I am militant gluten-free and my Celiac blood work was normal throughout. Pain is gone. Anyone else experience this. Did you find out what it was and what test or Lab? Thanks to all who share here.

http://www.popsci.com/peppers-marijuana-gut Found this and found it interesting, I will admit I love making edibles and it always seemed to help with my gut lol. "Your gut is something of an immunological mystery. Unlike the rest of the body, which tends to treat foreign invaders with a singular purpose?seek and destroy?the stomach cannot afford to be so indiscriminate. It exists to help fuel the body, and that means routinely welcoming foreign bodies in the form food. ?If we injected ourselves with the food that we eat, we would have a massive immune response,? said Pramod Srivastava, an immunologist at the University of Connecticut School of Medicine. When our gut?s immune system starts acting more like that of the rest of the body, the gut gets inflamed and starts attacking its own cells. The end result is illness. Diseases like celiac (an autoimmune reaction to gluten) and ulcerative colitis (one of two types of Inflammatory Bowel Disease, the other being Crohns) occur when the gut?s immune system starts treating food, and our own body, like an interloper. These conditions often leaves sufferers in tremendous pain and at an increased risk of both malnutrition and colon cancer. But if researchers could figure out how to calm down that immunological response, it might be possible to create a treatment. Srivastava?s recent study in the Proceedings of the National Academy of Sciences suggests we may be one step closer to finding a cure. He found that anandamide, a chemical that the body makes naturally and that is very similar to chemicals found in marijuana, helps calm down the immune system?at least in the guts of mice. If his studies hold up in humans, he says it could eventually lead to a cure for ulcerative colitis. To understand how Srivastava came to this conclusion it helps to look at his earlier work. Srivastava found that when he exposed immune cells to hot temperatures that the cells became highly activated?in other words, the immune cells went to work. Previous studies have shown that elevated body temperatures (better known as fevers) can help immune cells work better. But what Srivastava wanted to know was why. How exactly did the cells know that it was getting hot in there? ?It was known that there were certain calcium cells that open up in the nerves when they are exposed to high temperature,? said Srivastava. ?So, if the hand encounters a hot stove, those calcium cells open, calcium falls into the nerve and that nerve impulse goes to the brain, and we know that it is warm or hot.? It turns out that the same calcium channel is also how immune cells knew that their Petri dishes were getting warm. If physically hot temperatures activate the immune cells, Srivastava wondered, would capsaicin?the chemical that makes chili peppers feel hot?do the same? The answer was yes. Immune cells exposed to chili pepper in a Petri dish behaved just like cells exposed to higher temperatures. But our cells aren?t exposed to capsaicin directly when we bite into a spicy dish. So Srivastava fed the chemical to mice with type 1 Diabetes (which, like IBD, stems from autoimmune inflammation) to mimic our actual exposure. Since the Petri dish experiments showed that heat and capsaicin tended to make immune cells more active, the mice fed capsaicin should have developed more diabetes than the control group. But the opposite happened. Srivastava found that capsaicin didn?t ramp up the immune cells in their guts?it chilled them out. The mice fed capsaicin actually stopped being diabetic. It turns out something else happens when a mouse chows down on capsaicin. A special kind of immune cell, CX3CR1, also gets activated. And that immune cell tends to suppress immune responses in the gut. Since the body can?t really depend on a steady diet of chili peppers to keep us healthy, Srivastava went looking to see what else binds to the same calcium channel as capsaicin. He discovered that anandamide does. Anandamide was discovered in the 1980s when researchers were trying to make sense of why our body, especially the brain, has cannabinoid receptors. Cannabinoids, found in marijuana, are part of a class of chemicals that can alter neurotransmission in the brain. Nature didn't develop those sensors just so humans could get stoned: anandamide is similar to the cannabinoids found in marijuana, but our body actually produces it. ?The person who discovered anandamide had an interest in Indian languages,? said Srivastava. ?And in India, the word ?ananda? means bliss.? Nobody knows whether anandamide actually induces a sense of bliss, but mice fed anandamide experienced the same healing effects?stretching from the esophagus down through the stomach?as mice fed capsaicin. Srivastava also discovered that when he gave mice capsaicin, it seemed to stimulate their bodies' production of anandamide. In both cases, it was ultimately the anandamide that was healing the gut, which suggests that other cannabinoids like marijuana might have a similar effect. As with all studies, there are some limitations. Srivastava?s work was done in mice, not people. But it does fall in line with anecdotes from IBD sufferers who have found that marijuana relieves some of their symptoms, and other studies that have found that people who eat chili peppers live longer. Because anandamide is a cannabinoid, it?s pretty heavily regulated?you can?t just give it to humans. As a result, Srivastava hopes to work with public health authorities in Colorado?the land of medical (and recreational) marijuana?to see if legalization has led to any improvement in colitis patients who consume edibles. If it has, that could help Srivastava make the case for a study that repeats his experiment in human patients. In the meantime? Well, if you live in Colorado and want to try something new for your IBD, you're sure in luck. But most patients should probably hold off on trying to mimic the study results at home: many IBD patients report negative reactions to spicy foods, likely because they increase stomach acid and often contain nightshade plants. So guzzling hot sauce might not be a safe way to boost your body's anandamide production."