Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Scott Adams
    Scott Adams

    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:
    • 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.



    User Feedback

    Recommended Comments

    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.

    Share this comment


    Link to comment
    Share on other sites

    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.

    Share this comment


    Link to comment
    Share on other sites
    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.

    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.

    Share this comment


    Link to comment
    Share on other sites


    Join the conversation

    You can post now and register later. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

  • Related Articles

    Dr. Scot Lewey
    Celiac.com 04/24/2008 - Genetic tests for celiac disease and gluten sensitivity are readily available. Testing can be performed on either blood and mouth swab samples. If the testing is performed by certain laboratories not only will you have quite an accurate prediction of your risk of Celiac disease but also you may have information about the statistical probability that your children will inherit the risk, your likelihood of more severe Celiac disease, whether one or both of your parents had the risk gene, and for some laboratories you may determine your risk of gluten sensitivity without Celiac disease.
    The absence of any portion of the high-risk genetic patterns DQ2 and DQ8 nearly excludes the possibility of celiac disease with an approximate accuracy of 99.9%. However, there is a big caveat about relying on "negative celiac genetic testing". To definitively declare you have negative celiac genetic tests requires that the laboratory test for and report the presence or absence of the entire HLA DQ genetic pattern, including both alpha and beta subunits. The DQ genetic patterns DQ2 and DQ8 have two subunits but some laboratories only test for the beta subunit. This DQ typing is complicated and difficult to understand even by physicians and scientists. I have written an updated detailed review that appears in the Spring 2008 issue of Scott-Free newsletter published by celiac.com.
    Data collected by Dr. Ken Fine of Enterolab has supported the well-known fact that the absence of DQ2 and DQ8 does not exclude the risk of being gluten intolerance or sensitive though it now generally believed that one or both of those genetic white blood cell patterns are required to develop the autoimmune disorder known as Celiac disease or Celiac Sprue. However, there is a new study that reports that being negative for DQ2 and DQ8 does not completely exclude the possibility of celiac disease, especially in men. Previous studies have well documented blood test negative Celiac Sprue, also more common in elderly men with long-standing severe disease. Since DQ2 or DQ8 is almost universally present with the specific blood tests tissue transglutaminase and anti-endomysial antibodies are present it is not surprising that individuals without DQ2 or DQ8 that are negative for these two blood tests are being reported that meet criteria for Celiac disease.
    These new studies are also providing further information that the genetics of Celiac is gender specific. If you are a man, your risk of celiac disease may be higher than a woman if you don't have the classic genetic patterns. Again, in this situation your blood tests may be negative. If you are a woman, the risk for Celiac disease is generally higher than a man, especially if you have received the at risk gene from your father instead of your mother.
    Celiac is arguably the most common autoimmune disease. It is very common. It is easily treated. It affects 1/100 people worldwide. However, most people with celiac disease (~90%) are unaware, undiagnosed or misdiagnosed. Most adults finally diagnosed with celiac disease have suffered at least 10-11 years and have seen more than 3 or more doctors. Genetic testing is not only available but can be extremely helpful in determining your risk of developing Celiac disease, how severe it may be and the risk of your family members. Don't be one of those whose diagnosis is missed or needlessly delayed for over a decade. Get tested! Learn about the genetic tests for Celiac disease and if necessary educate your doctor about this testing.
    Here are ten facts you should know and remember about Celiac genetic testing.

    Genetic testing can help determine your risk as well as your children's risk. Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results. Genetic testing is not affected by diet. You can be eating gluten or on a gluten free diet. Blood tests for celiac disease antibodies, however, need to be done while eating gluten. They can become negative within a few weeks of restricting gluten so if you are going to get the diagnostic antibody blood tests don't begin a gluten free or restricted diet before being tested. Some insurance companies do not for the Celiac genetic test and almost all who do require pre-authorization first. The following diagnostic codes are helpful when requesting insurance coverage: 579.0 (Celiac disease); V18.59 (family history of GI disease); and/or V84.89 (genetic susceptibility to disease). Some laboratories do not perform the all of the necessary components of the test to completely exclude the possible genetic risk of Celiac disease and most don't test for or report the other gluten sensitive DQ patterns. Before you accept that have a negative test you need to know if your test included both the alpha and beta subunits of HLA DQ or did they just perform the beta typing. In some rare individuals, especially some men, a negative genetic test may not exclude the possibility of celiac disease anymore than a negative blood test. Men more commonly have negative genetic tests and blood tests, especially older men with long-standing severe disease. Both the DQ type, and number of copies you have, matter when determining not only your risk but also the possible severity of celiac disease. Two copies of DQ2 carries more risk than one copy of DQ8 or only partial DQ2. Even a single copy of DQ2 alpha subunit ("half DQ2 positive") carries risk for celiac disease but most of the commonly used laboratories for Celiac genetics do not test for or report the presence of this component of the celiac genes. The absence of at risk genes DQ2 and/or DQ8 does not exclude the possibility of being gluten intolerant or sensitive. You may respond to a gluten free diet even if you don't have DQ2 or DQ8 or true autoimmune Celiac disease. You can get genetic testing without a doctor's order and the tests can be done without having blood drawn or insurance authorization if you are willing to pay between $150-400 (www.kimballgenetics.com and www.enterolab.com). Laboratories in the U.S. that are known to offer complete alpha and beta subunit genetic testing include Kimball Genetics, Prometheus, and LabCorp. Bonfils, Quest and Enterolab only test for the beta subunit portions and therefore their test can miss part of a minor alpha subunit that carries a risk of Celiac disease. A negative DQ2 and DQ8 report from these labs may not necessarily be truly negative for the risk of Celiac disease.
    References and Resources:
    HLA-DQ and Susceptibility to Celiac Disease: Evidence for Gender Differences and Parent-of-Origin Effects. Megiorni F et al. Am Journal Gastroenterol. 2008;103:997-1003. Celiac Genetics. Dr. Scot Lewey. Scott-Free, Spring 2008.


    Scott Adams
    Celiac.com 08/12/2018 - Receiving a celiac disease diagnosis or being told you need to be on a gluten-free diet can be an overwhelming experience, and it is certainly not for the faint of heart. Most people get frustrated with the transition, and many don't know where to begin. While eating gluten-free can improve your health, I must emphasize that it is not recommended to attempt a gluten-free diet without a doctors supervision, as there are many potential health risks involved with making drastic changes to your diet, which can be avoided with assistance of a qualified doctor and/or nutritionist. If you suspect gluten-intolerance to be the culprit for your health problems, get examined by a doctor and get tested for celiac disease before initiating a gluten-free diet. It is very important to continually consume gluten while you are undergoing testing for celiac disease because many of the tests require you to be consuming gluten to get accurate results.
    Prescription: A Gluten-Free Diet
    Now that you have your diagnosis and need to eliminate gluten, you can make the transition to a gluten-free diet with confidence. The following information is a guideline of what you will need to know to get started. I must emphasize that this is only a guideline, and you will need to do your own research and consult with your doctor for more detailed information on a gluten-free diet. It is also a great idea to get involved in local support groups. Support groups will have members that understand what you are going through and they can help direct you to beneficial resources:
    Celiac Disease Support Groups, Organizations & Contacts Create New Habits
    To begin, if you are accustomed to doing things your own way, you will have to throw out many of your old habits. To avoid gluten poisoning you must keep all gluten away from your mouth. You will need to evaluate everything you ingest very carefully. Gluten can come in a variety of unexpected ways, including a kiss from a loved one, and any gluten that comes into contact with your mouth is a potential source of contamination. Cross-contamination can occur when a meal is prepared on cooking equipment shared with gluten-containing foods. It can also come from touching anything that has come into contact with gluten. It is therefore important to gluten-proof your house and to keep everything you eat separate from gluten and gluten residue. If you eat at restaurants, it is important to only eat at places that you know are safe. To help you avoid accidental gluten ingestion, please follow your instincts and use the following guidelines and avoid potential health hazards. Please remember that these are only guidelines--if you still have questions, please consult with a medical professional.
    What does "Gluten-Free" Actually Mean?
    Since gluten is found in wheat, rye and barley, it is obvious that you will need to avoid these grains. Less obvious however, are the myriad of products that contain gluten as a hidden ingredient. The Food and Drug Administration (FDA) recently regulated the use of "gluten-free" on a food label, and there was already an FDA regulation that requires manufacturers to declare wheat if it is used as an ingredient in a product. Products that don't use "gluten-free" on their label unfortunately don't have to disclose ingredients that are made from barley or rye, which requires you to learn to read and understand ingredient labels. Many additives, natural or artificial, can contain gluten. Sometimes companies label products as "gluten-free" or the ingredients are naturally gluten-free, but the product may have be contaminated if it was manufactured on shared equipment. You will have to decide if you want to include such products in your diet. It is also important to remember, for reasons just mentioned, that “wheat-free” does not mean “gluten-free.”
    Batch Testing:
    According to current FDA proposals, products testing at less than 20 parts per million (PPM)  for gluten will likely be allowed to be labeled "gluten-free," and, according to them, are considered safe for people with gluten-intolerance or celiac disease. There are several organizations that offer gluten-free certification for companies who follow their guidelines and batch test their products. Check out the link below for more information on gluten-free certification and labeling.
    Gluten-Free Food Certification Program by the Gluten Intolerance Group Gluten-Free Shopping
    Shopping will likely take much longer for you than it used to. Don't rush. It is important to read all ingredients carefully. If you are in a hurry, you run the risk of overlooking a key ingredient that might contain gluten. I find it helpful to plan my meals in advance. There is nothing worse than coming home from work hungry and realizing that you have nothing to eat (and it isn't like you can go to the first drive-thru you find). So planning my meals on the weekend and doing my shopping in advance, cuts my stress level down considerably and keeps me from going hungry. Check your products against your gluten-free guidebooks, and contact the manufacturer if you are unsure about something. The following links will help you take the guess work out of shopping for gluten-free products:
    Safe Gluten-Free Food List (Safe Ingredients) Unsafe Gluten-Free Food List (Unsafe Ingredients) As mentioned, there are also many products that are naturally gluten-free that are not labeled "gluten-free," and there are some very helpful books that can help you find these foods when you are shopping.
    A Gluten-Free Kitchen
    A gluten-free kitchen is very important. If you can have an entirely gluten-free kitchen, that is ideal, but it may not be an option for many households. Therefore it is especially important to keep your house clean and free of gluten contaminates.  It is also important to dedicate special kitchen supplies for gluten-free cooking. I bought a new cutting board that is dedicated only to gluten-free cooking. You may also want to have separate kitchen utensils such as sponges, toasters (a dedicated gluten-free toaster is highly recommended), sifters, bread machines, etc. This is especially important if you use utensils that are made of wood, plastic, or other porous materials that could harbor gluten and possibly contaminate your gluten-free food. If possible use an electric dishwasher to clean your dishes.
    If everyone in your household is going gluten-free it is important to clean out and empty all of the gluten products from your kitchen. If you share a kitchen with gluten eating family members, it is a good idea to store their food products separately from your gluten-free products, and to clean off all surfaces before you prepare your gluten-free food. Dedicating gluten-free cupboards and refrigerator shelves is a great way to start.
    Here are some important links that will help you cook gluten-free meals with ease:
    Gluten-Free Cooking Gluten-Free Recipes
    Kitchen Checklist - Possible Sources of Contamination:
    Bread-machine Toaster Sponges & cleaning pads All kitchen supplies & utensils Colanders Cutting boards Door handles Soaps For more information on maintaining a safe kitchen environment, click the link below:
    What You Need If You Can't Have A Gluten-Free Kitchen Dining Out Gluten-Free
    Dining out presents a challenge for most people on a gluten-free diet. Depending on your level of sensitivities, you may have difficulty eating out at all. Even if the restaurant offers a gluten-free menu, it is always important to find out what safety precautions the restaurant uses to avoid cross-contamination, and to make sure all the ingredients in your food are gluten-free. This may require you to modify your order, and also may mean talking with the chef about their kitchen practices. You may also benefit from utilizing a guide to safe restaurants.
    Here is an additional article that may be helpful to your situation:
    Take Charge of Your Meal When Eating Out A Gluten-Free Bathroom
    Believe it or not, your bathroom is another place where you might be getting sick from gluten contamination, and not even know it. There are many products in your bathroom to watch out for as many body products contain wheat and/or hidden gluten ingredients. Most celiacs can use body products without a negative reaction, though some people experience rashes and other unsavory reactions from gluten body products. However, if you are using face or body products that contain gluten, it is very important not to ingest them. I find it difficult to avoid getting shampoo or makeup near my mouth, so I don't take any chances. I use gluten-free soap, shampoo, conditioner, face-cleaner, toner, make-up, toothpaste; basically nothing goes onto my body that contains gluten. Using gluten-free body products allows me the freedom to worry less about accidental contamination, and gives me more time to enjoy my life. Many gluten-free body products are not labeled gluten-free, so it is important to read ingredient labels carefully and check with the manufacturer if necessary.
    Bathroom Checklist:
    Toothpaste Shampoo/conditioner Make-up Lip-stick, lip-liner, lip-gloss, cosmetics, etc. Lotion Sunscreen  
    Gluten-Free Medications (Prescriptions and Supplements)
    Most people with celiac disease or gluten-intolerance also suffer from malabsorption and sometimes malnutrition. Your doctor may prescribe pain, anti-inflammatory, digestive or other medications or supplements to help assist with your recovery. It is very important to note that some medications and supplements can contain gluten. Do not assume that just because your doctor knows you have celiac disease or gluten intolerance that the medications or supplements they may prescribe for you are gluten-free.  Be your own advocate and read the ingredients and contact your pharmacist and/or the manufacturer and find out if your prescriptions, vitamins and supplements are gluten-free.
    Gluten-Free Medications List Additional Concerns
    Children with Celiac Disease
    Raising children with celiac disease or gluten-intolerance is no easy feat. Your kids will have to deal with immense  peer pressure and there will be a great deal of temptation for them to eat gluten-containing foods. Talk to the staff at their school and help them to understand your child's special needs. The more support you have, the better off your child will be. There are many support groups that advocate for children with celiac disease, and it is important to get involved and learn everything you can to help support your child.
    Raising our Celiac Kids (R.O.C.K) Support Group Pets
    Your pets present another source of potential contamination, especially if you have pets like mine that love to smother you with unexpected kisses, sometimes on the mouth. What your pet eats can affect you too. Handling your pet's food, cleaning your pet's dishes and having young celiac children in a house where they may eat dog or cat food are all legitimate concerns. I decided to switch my pets to gluten-free pet food. Most pet food is not labeled gluten-free, so it is important to read ingredients carefully. I found grain-free, all natural pet food to be a great alternative to gluten-containing pet foods, that way I don't have to worry about accidental contamination or getting kisses from my pets--and it's healthier for them too!  It is also important to check all other pet products that you come into contact with for hidden gluten ingredients, like shampoos and soaps. It is of course always important to talk to your veterinarian before making any dietary changes for your pet.
    Other Food Sensitivities
    Most people who begin a gluten-free diet experience almost immediate relief from their symptoms. However, many people experience gluten-like reactions to other foods, and often suspect that their food was contaminated by gluten. As it turns out, many people who experience such reactions may in fact have additional food sensitivities. Some of the most common food sensitivities include, dairy/casein, soy, corn, sugar, nuts, shell-fish and processed or fatty foods. While many people report that they are able to add these foods back into their diet after they have established a gluten-free diet for many months, and after their intestines have had time to heal, it is up to you and your doctor or nutritionist to determine which foods may be causing you trouble. The 'elimination diet' is often recommended for determining what additional food sensitivities you may have. Ask your doctor if the elimination diet is right for you.
    Food Diary
    It is important to keep a food diary, especially when first initiating a gluten-free diet. Making notes of the foods you eat and the reactions you have to the foods you eat, and how you feel that day, can give you more insight as to which foods are hurting you and which foods your body can easily digest.
    Final Thoughts
    Be Picky
    Having a gluten intolerance means taking pride in your body, but not being too proud to say, "no, thank you." Don't worry about appearing too picky to others, you simply can't take care of yourself and worry what others think of you at the same time. You have the right to eat what you want; if something doesn't look, smell or taste right to you, or if you just don't feel right about eating something, don't eat it! It is better to come across as too finicky, than to spend the night in the bathroom or worse yet, the emergency room. Everyone has a different level of gluten sensitivity and you will have to find out through trial and error what works best for you.
    Be Prepared
    As a former Boy-Scout, my high-school teacher used to always say, "Be prepared".  I cannot emphasize enough the importance of this statement. It is important to be prepared and think ahead. Keep gluten-free snacks on hand at all times, because you never know when you are going to get hungry somewhere that doesn't offer gluten-free food. Keep shelf-stable snacks in your car, office, purse, and anywhere you spend time. It is better to have gluten-free snacks on hand, then to get hungry and make a bad decision to eat something you might later regret.

    Gluten-Free Quick-Check:
    Read all labels carefully Call the manufacturer whenever necessary Avoid cross-contamination at all times Keep your hands clean Check personal-care products for hidden gluten Check all vitamins, supplements and RX prescriptions for hidden gluten Make sure your pets are gluten-free Maintain a food diary Get involved-join a support group Rule of thumb-if you think it's possibly contaminated, don't take any chances. It's better to go hungry than to suffer later. Above all, trust your body Additional Resources:
    Gluten-Free Forum Celiac Disease Support Groups

  • Popular Contributors

  • Forum Discussions

    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
    He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
×
×
  • Create New...