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January 28th, 2011
08:54 AM ET

What can I do about my celiac disease?

Every weekday, a CNNHealth expert doctor answers a viewer question. On Friday, it's Dr. Melina Jampolis, a physician nutrition specialist.

Question asked by Patrick of Omaha, Nebraska:

How long does it take to feel the benefits of a gluten-free diet once diagnosed with celiac disease? I have been living gluten/casein free for over five years now and have yet to see much improvement.

Expert answer:

Hi Patrick. Since celiac disease affects approximately 1 percent of the population and is often undiagnosed until later in life, your question provides a great opportunity to educate people about this disease.

Gluten-free diets are essential for people who have celiac disease, a lifelong genetic condition in which the body does not tolerate the protein in wheat, rye and barley. When gluten-containing foods or products are consumed in those with the disease, the intestines are damaged, leading to inability to properly absorb vitamins, minerals and other nutrients.

Blood tests followed by intestinal biopsy are necessary for the diagnosis. Common symptoms include abdominal pain, bloating, diarrhea, fatty stools, weight loss and fatigue. Symptoms can also extend beyond the digestive tract due to nutrient deficiencies and include anemia, osteoporosis and neurological symptoms.

I'm not sure if you have casein allergy as well, but limiting dairy during the initial treatment can be useful as lactose intolerance sometimes occurs as a secondary consequence of the intestinal damage.

Celiac? To heck with that! Living gluten-free and well-fed

Without knowing what symptoms you have that have not improved, it is difficult to troubleshoot.

Most people will notice fairly rapid improvement after removing gluten completely from their diet, but it may take years for the intestines to fully heal. After five years, I would expect you to have noticed significant if not complete improvement. Here are a few possible reasons your symptoms may not have improved:

• Hidden gluten in your diet. It is shocking how many foods actually contain gluten in some form including things like hydrolyzed vegetable protein, starch, soy sauce, fillers and even binders used in pharmaceutical products and vitamins, according to the Celiac Disease Foundation, a great resource for those suffering from this disease. In addition, the National Institutes of Health has launched a campaign to increase awareness of celiac disease and its website is also a terrific resource.

• Refractory sprue. Some people have a less common form of the disease that does not respond to removal of gluten from the diet and requires stronger immune therapy. Your doctor would make this diagnosis.

• Nutrient deficiency. Due to the restrictive nature of a gluten-free/casein-free diet, you could be missing key nutrients, or you may have a lingering vitamin or mineral deficiency. I would highly suggest consulting with a registered dietitian with experience treating patients with celiac disease to fully evaluate your diet, and see your doctor for blood tests when appropriate.

• Associated autoimmune disease. In some cases, celiac disease may be associated with another disease in which the body attacks itself including thyroid disease, liver disease, rheumatoid arthritis and type 1 diabetes. See your doctor to rule out this possibility.

I hope this helps and that you start feeling better soon.

Ask experts a question


soundoff (69 Responses)
  1. Reid Winick

    Hi,

    This is a common question I get since I cured myself of Chrones disease 15 years ago. Being gluten and casein free is great and is part of the solution. However, it is not the only key to the puzzel. I would look into other factors such as parasites, the rest of your diet, heavy metals and underlying emotional issues. I hope this helps.

    Dr. Reid Winick, DDS
    http://www.DentistryForHealthNY.com

    January 28, 2011 at 09:01 | Report abuse | Reply
    • Christopher

      You can't cure yourself of Crohn's Disease - considering I have it as well. You might have alleviated symptoms but not cured it. I actually switched to a gluten-free diet, thinking it would help stabilize my Crohn's. The answer? No, it did not. I actually felt worse. If you're not allergic to gluten or don't have symptoms associated with gluten, there is no reason to not eat it. As soon as introduced gluten back into my diet, I felt fine. Again, this is trial and error and I agree with your other reasons such as parasites, etc. I just don't like people saying cure and Crohn's when anything can trigger a flare up.

      January 28, 2011 at 11:15 | Report abuse |
    • dave

      But he's a dentist. Surely he knows what he's talking about.

      January 28, 2011 at 12:50 | Report abuse |
    • ieat

      Have you tried Specified Carbohydrate Diet? It helped my friend with Crohn's immensely.

      January 28, 2011 at 15:00 | Report abuse |
    • Reid Winick

      Hi to all,

      The reality is I am cured of Crohn's Disease (no matter if I spell it right or wrong). I had numerous surgeries and was bound to have more. I was treated by very well trained doctors from Mt Sinai Hospital in NYC (where Dr. Crohn did his research). Whether some of the participants choose to believe me or not is up to them. All I know is that around 1995, my Mt Sinai doctor, who about one year prior was about to put me on more medication and possibly the need for another surgery, deemed me cured of Crohn's Disease. A statement I thought I would never hear from his mouth. The bottom line (for me) is that any chronic inflammatory condition requires a multi treatment approach and just eliminating gluten may not be the answer. Good luck to any of you out their dealing with this devastating and debilitating disease. Don't give up – there is an answer out there!

      Dr. Reid Winick, DDS
      http://www.DentistryForHealth NY.com

      January 28, 2011 at 16:59 | Report abuse |
  2. Jason

    Reid,

    Since Chrones disease has no known cure, something tells me you should a) publish a book about what you did to "cure" it or b) shut up....

    January 28, 2011 at 09:13 | Report abuse | Reply
    • Jason

      Man I feel dumb, Crohn's disease... but that just proves me point...

      January 28, 2011 at 09:15 | Report abuse |
    • lance corporal

      like to tell people what THEY should do huh? perhaps you should take your own advice and shut the hell up? how about option C she can describe her experience when ever and where ever she cares to including online

      January 28, 2011 at 12:19 | Report abuse |
    • KT

      1) Rude
      2) Not helpful
      Maybe we ought to be happy for this person who was able to relieve themselves of the symptoms of a very difficult to treat disease instead of belittling him.

      January 28, 2011 at 13:42 | Report abuse |
  3. John

    Just because you go gluten free doesn't mean their are not other things going on. My wife is gluten intollerant and is still affected when you has dairy or grains (not necessarily gluten issues). There is a surprisingly high number of people who have the genes for gluten intolerance and celiac where it has not activated yet, sometimes for years. I myself have a gene for gluten intolerance AND one for celiac, yet I don't seem to have any known issues. It doesn't mean it can't be activated, which can happen for some dramatic event like a car crash, but I still keep alert for symptoms when I don't feel 100%. We have more preservatives in foods these days that I often wonder do we really need to be embalmed when we die. We are getting less food and more preservatives every day in processed food so it is no wonder we have more issues.

    January 28, 2011 at 10:51 | Report abuse | Reply
    • mrsmarvel

      Our bodies were not made to process the foods we have available to us at grocery stores – mass produced, packed with preservatives, etc. as you say. If possible to eat "raw" foods, not necessarily uncooked, but food that is as it was made. Fresh fruit vs. canned, fresh veggies vs. frozen/canned, fresh bread vs. premade, even cookies! it's best to make your own and so very easy, skip the prepackaged dough. Since we have started trying to eliminate processed foods we are feeling a lot better. No real reason, for us, just that it didn't seem right to eat all those chemicals.

      January 28, 2011 at 12:31 | Report abuse |
    • Linda

      John's right. And, there is also another autoimmune disorder that no one ever mentions and is under diagnosed despite its growing prevalence – mastocytosis. Lactose intolerance and egg allergy and IBS can produce some of the same gastro symptoms as celiacs and can co-occur with celiacs. Good luck.

      February 3, 2011 at 17:47 | Report abuse |
    • pibbles

      there is no "gene for gluten sensitivity".

      November 7, 2013 at 15:35 | Report abuse |
  4. Karen

    Many people mix up gluten, gliadin, lectins and WGA (wheat germ agglutinin). Well, gluten is derived from the Latin word for glue. And sticky it is. It is the composite of the plant storage proteins prolamin and a glutelin. In wheat the prolamin is gliadin and the glutelin is glutenin. In other cereal grains you’ll find other prolamins and glutelins. So the variety of gluten and its components as found in various cereal grains is diverse. In popular language gluten is chiefly used for the gliadin in wheat. From gliadin there are again several types. So the gluten story is not that simple. For more details about gluten and lectins, read this: http://www.cutthecarb.com/your-daily-bread-pasta-and-pizza-are-killing-you/

    January 28, 2011 at 11:10 | Report abuse | Reply
  5. Amanda

    My daughter is sensitive to gluten, although she does not have Celiac. She has been gluten-free for over a year and while her eczema cleared up, she never got that burst of energy I expected and still had frequent stomach aches. Turns out she is also sensitive to eggs and sugar. I'm just starting the detox on these foods so I don't know how/if her energy level and aches will improve, but goes to show that gluten may not be the only problem.

    January 28, 2011 at 11:47 | Report abuse | Reply
  6. Jim

    Hmm.. Not being able to spell a disease is a pretty good indicator of not being an expert source.

    Crohn's is best left to the immunologists, perhaps..

    January 28, 2011 at 12:15 | Report abuse | Reply
  7. lance corporal

    food allergies and the sicknesses that cause us to look at food allergies frequently occur in a spectrum, MANY people diagnosed with celiac actually have a larger issue that JUST eliminating gluten will not resolve, common additional foods to consider are; as mentioned casein/dairy is very common plus yeast, coffee, chocolate, eggs, sugar and many of the chemicals used in processed foods, intestinal fungal disorders are common and will mimic celiac, there is a lot of info available online and you can not just go to a doctor get a diagnosis and take the limited treatment given, YOU have to take responsibility for your health in this area because it is just not well enough understood yet, try elimination diets, one way is to drop certain foods and see how you feel, the best way is to do an extended fast then drop ALL potentially harmful foods for a month and then slowly start to reintroduce them one at a time while watching what happens, excersize and anything that will improve your metabolism is a real help, yoga/tai chi/chi gong type stretching and meditation will improve your digestive system (it really does..) plus help eliminate the stress that is frequently triggering these issues and if you have pent up emotional issues, childhood, divorce etc, deal with them, in many they are causal. watch out for hidden gluten in MANY products and good luck on your journey to health

    January 28, 2011 at 12:15 | Report abuse | Reply
  8. CFS Facts

    If you are treating celiac disease but actually have something else, you will not improve. There are enough similar symptoms between celiac and CFS that innumerable people have been misdiagnosed in both directions.

    January 28, 2011 at 12:34 | Report abuse | Reply
  9. dave

    1% has this problem but it seems like at least 10% think they have it. Everybody wants to have something wrong with them. They like the attention.

    January 28, 2011 at 12:53 | Report abuse | Reply
    • KT

      Maybe "10%" think they may have Celiac because digestive issues are so common in this country of processed "foods." It is rude and insensitive to assume that everyone who has an issue is looking for attention, when what they are looking for is help.

      January 28, 2011 at 13:51 | Report abuse |
    • dave

      No, they all want attention. They're the same people who think vaccinations give kids autism.

      January 28, 2011 at 14:07 | Report abuse |
    • Robin

      That is the most ridiculous comment I ever heard. I have had major intestinal surgery and have had discomfort for years. A blood test indicated possible Celiacs. I have had an endoscopy and DNA testing and we are still not sure the diagnosis is really Celiacs vs. an intolerance. Some of us out here have real issues we are trying to diagnose and get relief from. I am brand new to this chat site and your responses are offensive. I am not looking for "attention" and you sir – are a real jerk.

      January 28, 2011 at 15:34 | Report abuse |
    • dave

      Well I guess that unfortunately puts you in that 1%. That doesn't mean the other 9% or whatever it is, don't exist.

      January 28, 2011 at 15:42 | Report abuse |
    • Mamudoon

      Dave, I see that all the time with parents today. Try to find a parent whose child doesn't have at least one food allergy these days. It's not uncommon for me to see parents claiming that their kids have literally dozens of food allergies. The kid sneezes and suddenly, he's allergic to wheat, soy, dairy, corn, peanuts, tree nuts, shellfish, potatoes, and God knows what all else. Guess what? Sometimes kids just get sick. It happens. It's part of being a kid. But "special" parents want "special" kids.

      It disgusts me because it makes it much more difficult for people who actually have food allergies to be taken seriously and get the help they need.

      January 28, 2011 at 16:06 | Report abuse |
  10. mark

    I'm surprised to that this "physician nutrition specialist" (whatever that is) left out what is likely the most common reason why this patient may not have improved after 5 years... WRONG DIAGNOSIS. I'm a rheumatologist, and I'm a shocked at the number of people that I see in my office every day that have been diagnosed with Celiac Disease without a biopsy or positive labs. Once again, it would seem that a real disease with symptoms that are common for many other illnesses has been co-opted by lazy physicians who would rather hand out a diagnosis to a complaining patient rather than take the time to listen to them or perform a thorough evaluation... not unlike with lupus or lyme disease.

    January 28, 2011 at 13:25 | Report abuse | Reply
    • dave

      I wish CNN had 'Like' buttons or "Recommend' buttons for posts. Thank you.

      January 28, 2011 at 13:34 | Report abuse |
    • ieat

      I want to know where you work so I can go see u!

      January 28, 2011 at 15:03 | Report abuse |
    • NOVANative

      I have a friend who had celiac disease diagnosed in her daughter by a chiropractor who had her hold a glass vial of wheat and said it made her arm weaker. No lie! No amount of arguing could change this woman's mind. She has marched her family off on a gluten-free diet and frets constantly that she might miss some gluten and give them the wrong food. I think the stress is negatively affecting her far more than the gluten ever would have her daughter (since she likely does not have celiac disease).

      January 28, 2011 at 15:17 | Report abuse |
    • elizabeth

      Mark- where are you located?

      January 28, 2011 at 15:27 | Report abuse |
    • Dr. Melina Jampolis

      This is a very good point. Thank you for bringing it up. I did discuss how celiac disease is appropriately diagnosed (blood test followed by biopsy) but I agree that there are quite a few people that are self of misdiagnosed. Thank you for your comment. And by the way, in response to your 'what is a physician nutrition specialist'comment, I was board certified in internal medicine and went on to get a second board certification (this is a relatively new certification) as a physician nutrition specialist. I focus exclusively on nutrition in my current practice.

      January 29, 2011 at 18:12 | Report abuse |
    • shauna

      Another potential problem (aside from many of the above mentioned, like incorrect diagnosis or other food allergies, conditions, etc...) could be that the level of gluten being eaten is too high for an individual. I come from a family with four diagnosed celiacs. Two of them can eat tested gluten free products that make the other two of us sick as dogs. It's not differing food allergies/intolerances, however. We do not have gut issues with gluten, but neurological problems, so the results are very different from our food intolerances (which DO give gut symptoms). It's very clear when we have accidentally ingested too much gluten. We have even done blind tests, buying various gluten free products and eating them, and then after we react/don't react, we called up the company to find out what their gluten ppm cut off was. One of us is consistently ill if she eats a serving of products that are more than 10ppm of gluten. The other, it's 5ppm of gluten. If such a thing is happening, staying on a 'gluten free' diet doesn't do much good; it has to be gluten free enough for YOU. I did not start to improve until we achieved that.

      There can also be problems with work environments, such as working in construction or the food industry, where a lot of dust in the air can contain gluten and enter the mouth and, of course, the stomach (dust from drywall, sawdust from plywood, flour from baking). These can really impede any ability to heal, when you are getting bombarded with a constant source of airborne gluten.

      January 31, 2011 at 00:22 | Report abuse |
  11. Karen

    I am a pediatrician who was diagnosed with a wheat allergy by skin testing after an episode years ago of exercise-induced anaphylaxis. It took the fun out of jogging to end up unconscious in shock and spending the night in the ICU. He said I might not be allergic to wheat, but definitely I was allergic to aspirin and Ibuprofen. Of course, I did not quite believe him until I took aspirin 6 months later and had to take epi-pen when I swelled up and almost went into shock again. I finally went gluten-free when I couldn't stop the hives and horrible migraines, and boy did that help! Do I recommend anything? See your own doctor and you might want to do what they say.

    January 28, 2011 at 13:46 | Report abuse | Reply
    • ieat

      you're a pediatrician and you don't even know your own condition? God help the rest of us.

      January 28, 2011 at 15:04 | Report abuse |
    • NOVANative

      In this person's defense, he (or she) said it was years ago. He might not have been through medical school, or have even started it, by then.

      January 28, 2011 at 15:19 | Report abuse |
    • elizabeth

      all doctors don't know everything ABOUT everything. a pediatrician has no reason whatsoever to know about conditions that affect adults- thats why we have specialist. you don't do to the dentist to have your eyes checked

      January 28, 2011 at 15:22 | Report abuse |
    • elizabeth

      "go to" rather. sometimes my fingers are faster than my brain.

      January 28, 2011 at 15:24 | Report abuse |
    • mark

      I completely agree with Elizabeth as a rheumatologist. There is far more that we do not know and understand about human health than what we do understand. Unfortunately, shows like House and Mystery Diagnosis perpetuate the idea that there is a diagnosis for every symptom, it's just a matter of finding a doctor who's smart enough to figure it out. That can certainly be true in many cases, but in other cases it may not be so straight forward.

      January 28, 2011 at 15:26 | Report abuse |
    • elizabeth

      a man who agrees with me! mark do you play golf too? i kid... i think the wrong people are doctors for all the wrong reasons. i WANT to go to medical school but i'm afraid of becoming jaded like all the rest. i think we are given pills and go "okay, that took care of it, lets move on" instead of treating their actual condition. at the end of the day we are merely humans- sick crazy humans

      January 28, 2011 at 15:30 | Report abuse |
    • mark

      Elizabeth, I think most of us went to med school for the right reasons, but I blame the healthcare system. The healthcare system does not reward or pay for doctors to think about patients. It rewards seeing as many patients as possible and performing procedures on them... which leads to sloppy and incomplete care. I am fortunate enough to work in a clinic that allows me to spend 30-60 minutes per patient, and our clinic LOSES money hand over fist. I am very lucky that our clinic is part of a hospital that recognizes the greater good of supporting a clinic like ours, even though we lose money. Hoepfully, some day, truly effective healthcare reform will encourage more clinics that truly care for people, rather than encourage assembly line and cookbook medicine that is not equipped to deal with complex or rare conditions.

      January 28, 2011 at 16:02 | Report abuse |
    • elizabeth

      Mark- WHERE is this clinic?

      January 28, 2011 at 16:20 | Report abuse |
    • Lisa

      You should know that if a person is allergic to wheat that is different than having celiac and there is no need to avoid all gluten. You should know that skin and blood tests for food allergies have at best a 50% accuracy rate for positive results. You can't diagnose a food allergy just based on test results. You should consider a food challenge to be sure you are avoiding things that are actual allergies for you. People can have exercise induced anaphylaxis. That doesn't indicate they have food allergies in any way. Why are you avoiding all gluten now?

      January 28, 2011 at 18:28 | Report abuse |
  12. JClark

    I was diagnosed with gluten intolerance (trigger for IBS) and went off gluten as well for a year and saw little improvement in my symptoms. What turned my life around? My physician prescribed pancreatic enzyme replacement. CT scans showed no damage to my pancreas for it to not be producing enough enzyme but according to my gastro pa, a very small percentage of people with IBS that don't respond to any other treatment (removal of triggers, other more common drug therapy, behavioral therapy like exercise, etc) get relief from their symptoms with this and it definitely worked for me. I still keep gluten out of my diet because even with the enzyme I can't tolerate gluten but I feel mostly normal now. Just something to think about....

    January 28, 2011 at 14:21 | Report abuse | Reply
  13. elizabeth

    i'd like to know WHO to see! we live in the atl metro area and i've not found a doctor yet who will help me with the cause and not just the symptoms.
    i've recently found out i'm allergic to wheat- but i don't have a gluten "intolerance". i had my colon checked last year BEFORE i found out i was allergic to wheat. since finding out about my allergy i've been trying to cut wheat out of my diet but it seems like it's at every turn. i feel like all i do is read labels and hit up google. if anyone knows of a great specialist here in atlanta please let me know.

    January 28, 2011 at 15:17 | Report abuse | Reply
    • dan

      elizabeth, I live in denver and couldn't find a specialist to help me with my gluten interolance. But, you can get tested and talk to everyone ni the world but in the end it comes down to taking gluten out of your diet and monitoring your results. You will either feel better or you won't. For all the allergy testing I underwent, you know what the allergist said when I asked what the results tell us? she said "well, tbh, you'll just have to remove gluten from your diet and see what happens". I said to her then why in the name of heaven did I go thru all this testing...........................???!!!!!!!! Answer – cause there's no money in it for her. Testing is cash flow. cynical? maybe, but reality? definitely!!

      Plenty of online resources, books at the library, and good ole fashion focus and you can redesign your diet to eliminate gluten and dairy.

      January 28, 2011 at 18:24 | Report abuse |
  14. Maggie

    Thank you CNN for helping drive awareness and understanding of celiac disease.
    – Maggie, Rudi's Gluten-Free Bakery

    January 28, 2011 at 15:32 | Report abuse | Reply
  15. kerry

    I am gluten and casein intolerant as well as suffering from a fatty liver, IBS.gallbladder, sinus issues and asthma. My holistic nutrionist changed my life for the better. No doctor has ever asked me the questions she has or done such a thorough evaluation of my medical history. IShe solved in one initial consultatin what I could not in 18 years.

    January 28, 2011 at 16:07 | Report abuse | Reply
  16. Michael

    There are a lot of foods we should all avoid. If you suffer from Celiac disease, yes, by all means you should remove gluten from your diet. If you're NOT diagnosed with Celiac Disease... then gluten is NOT your issue. The primary cause for malnutrition and food allergies is OVER PROCESSED FOOD. White flour (oh so common in the American diet) is nutritionally bankrupt. If you stir a little water in some processed white flour... it will turn into "school paste" (this is what happens in your stomach!). Healthful foods do not cause difficulty when ingested, as your body (and mine) are designed to digest, and absorb nutrients from good, clean, healthful foods. Your "wheat issues" may in fact fall by the wayside with a few simple dietary changes.

    Try this for a month and see: Eat only Sprouted Wheat! The sprouting process activates enzymes that actually "pre-digest" the wheat... making it more easily digested by your body. Sprouted Wheat is wheat in its purest form... a living breathing plant... ground into a paste and used as a dough to make the absolute best breads. Consider switching to Sprouted Wheat breads and see for yourself the difference this little change can make in how you feel.

    Healthy Food = Health You!

    January 28, 2011 at 16:35 | Report abuse | Reply
  17. ESM

    You may want to look into whether you have fibromyalgia or chronic fatigue symptom. My fiancee spent a year thinking she had celiac's disease when in fact she suffers from fibromyalgia and does not even carry the celiac gene. The reason for the confusion is that the symptoms are very similar. A gluten-free diet is one of the recommended treatments for fibromyalgia; however, it doesn't totally relieve the symptoms. I would go to a rheumatologist for further diagnosis. In the meantime, you may want to consider a vegetarian/vegan diet. My fiancee tried this and it alleviated a majority of the digestive problems she had been having. It may be worth a try for you as well.

    January 28, 2011 at 16:58 | Report abuse | Reply
  18. Reid Winick

    Hi to all,

    The reality is I am cured of Crohn's Disease (no matter if I spell it right or wrong). I had numerous surgeries and was bound to have more. I was treated by very well trained doctors from Mt Sinai Hospital in NYC (where Dr. Crohn did his research). Whether some of the participants choose to believe me or not is up to them. All I know is that around 1995, my Mt Sinai doctor, who about one year prior was about to put me on more medication and possibly the need for another surgery, deemed me cured of Crohn's Disease. A statement I thought I would never hear from his mouth. The bottom line (for me) is that any chronic inflammatory condition requires a multi treatment approach and just eliminating gluten may not be the answer. Good luck to any of you out their dealing with this devastating and debilitating disease. Don't give up – there is an answer out there!

    Dr. Reid Winick, DDS
    http://www.DentistryForHealth NY.com

    January 28, 2011 at 17:00 | Report abuse | Reply
  19. Very simple solution

    I'm sorry, but you must be alergic to something else in addition to gluten. For me, it is GUAR GUM and Xantham GUM. These items are in most of the Gluten free foods. Good luck.

    January 28, 2011 at 17:27 | Report abuse | Reply
  20. Beth

    I am sorry to hear that your symptoms are still lingering. Have you had any allergy testing performed? I would highly recommend having a standard food allergy profile completed (you can read more about this at http://centerforfoodallergies.com/3.htm). Also, have you been paying close attention to possible hidden gluten sources in your diet? As mentioned in earlier posts, gluten can be found in so many unexpected places, including medications, cosmetics, and many processed foods. Dr. Wangen provides a helpful list of hidden gluten sources in his book, "Healthier Without Wheat." This book has been extremely helpful for me in better understanding gluten intolerances and all of the complications and misunderstandings that follow.

    January 28, 2011 at 17:59 | Report abuse | Reply
  21. Erika

    I didn't feel better going gluten free because it wasn't Celiac. I went to an endocrinologist for a separate issue and he looked at my scans/bloodwork and asked me if I'd mind being retested. He had me reintroduce gluten and re-test and it wasn't Celiac. We figured out the problem and now I can enjoy bread and beer again.

    January 28, 2011 at 18:14 | Report abuse | Reply
  22. dan

    I had developed gas in my stomach that would never go away. I tried changing my diet, drink more water, played with the amount of fiber I was taking in, working on varying up the types of fiber, amounts, and water intake to try and eliminate the issue. Then my colon stopped working as it was.......this went on for almost 3 yrs. Doctors were clueless, just providing prescrptions, doing various tests with no real results or conclusions.

    After about 3 yrs of this I started to get sick all the time. In looking back I was always sick. And bear in mind I ate fairly healthy. No micky-d's or clones, don't smoke, moderate alcohol intake, excercise and active, drink lots of water, watched my sugar intake, etc, etc......a fairly healthy lifestyle. Then, things got worse about a year ago now. My colon was almost done in terms of working....I kept using drugs to go to the bathroom. My digestive system essentially shut down. I had stomach pain. I developed asmtha, which progressed quickly. My doctor gave me more presciptions and sent to specialists (allergist and pulmonologists). I got sicker....to the point of not being able to get out of bed. Extremely tired. I was diagnosed as having an auto-immune disorder and some sort of lung disease to explain the symptoms. Finally, last may, I googled my symptoms and up popped gluten. Desparate as I was, I went cold turkey on gluten. Within 3 days I noticed a massive improvement in just about everything. Two months later I gave up dairy and within a week my asmtha almost dissappeared.

    Food interolances are very real. And doctors either don't want to address it because there no money to be made telling patients to get off of processed foods, or, their education completely ignores its. Either way, its not a prescription and its not an operation. But, it very well may be your solution. It certainly was mine!

    best of luck to everyone.......there's no simple answer that fixes all problems, but, keep your minds open to the possibility that the solution is not at the end of a scaple or down inside a bottle of pills.

    January 28, 2011 at 18:16 | Report abuse | Reply
    • dan

      oh, one last note to my story. After I gave up gluten and had recovered significantly, I went back to my doctor and told her what I tried and the results. She politely listened. After about a 5 minute explanation I asked her what she thought. She looked at my politely and said "I don't practice eastern medicine". That was the end of our conversation, and, the end of our doctor/patient relationship. I probably should have ended it a lot sooner, but, lessons learned!!

      Be responsible for your own health. Take a look at what YOUR doing first. Look at your sugar intake, alcohol, excercise levels, food products, habits.......look at all this first and make meaningful changes before even bothering to go to a doctor (unless its critical of course).

      January 28, 2011 at 18:37 | Report abuse |
  23. Michael

    ALL wheat is NOT created equal! If you are not part of the 1% who actually HAS Celiac disease... eating wheat should not be an issue for you (like it hasn't been for a gazillion people since time began) as long as you don't consume highly processed white flour. To reference my earlier comment... eat Sprouted Wheat bread and you will be doing yourself... and your body a world of good. Switching to Sprouted Wheat breads has changed my life for the better... and I hope it can change yours as well. (it's certainly worth a try!) My favorite Sprouted Wheat bread comes from Alvarado Street Bakery in California. They've been making these same recipes for over 30 years... and do a really nice job (solar powered too!)

    To your health...

    michael

    January 28, 2011 at 18:20 | Report abuse | Reply
    • dan

      lol.......gluten is gluten. If your allergic, interolant, or worse then.....gluten is gluten. Sorry to say, I take it from your post that your business is sprouted wheat bread. I understand. And yes, the fact is that people should try different foods before making a final decision.

      but, your point that people have been eating wheat since time began is misleading and exposes your special interest. We've only been eating industrialized wheat for about the last 50-100 yrs, and our bodies are not doing well on processed foods. Its time to force the food industry to make meaninful change.............STOP BUYING PROCESSED FOODS and corporations around the worl d will stop selling it. Simple supply/demand.

      January 28, 2011 at 18:29 | Report abuse |
  24. Lisa

    My guess is incorrect diagnosis. I'd see another doctor.

    January 28, 2011 at 18:29 | Report abuse | Reply
  25. Reid Winick

    Hi Dan,

    Your story of what you went through when you where sick and when you where recovering sounds very similiar to mine.
    Keep up the good work and your words of wisdom. You are on the right track and anyone who listens to you when you try to guide them is very lucky yo have your suport.

    January 28, 2011 at 21:55 | Report abuse | Reply
  26. Rick A Hyatt

    For shoyu, try La Choy. For mustards, read if it says "Distilled vinegar," not just "Vinegar." For beer, either try to brew your own, or go for Budweiser's "Red Bridge," (or "Sapporo" )when they remember to put the hops in it. I've been looking for a supplier of "Die Grist," which is supposed to taste better.
    Stick to Rhine wine, or Chablis. Don't believe that gin is safe.
    Keep a detailed food log. It is my experience that the second day I get a horrible "Crown of Thorns" rash, followed the next of shot-gun shot like dots all over my shins, also very itchy.
    You'd bee surprised just how many "Organic" vitamins & things not only have gluten – They don't list the allergens, either.
    Keep to pure coffee & tea, and keep away from blends and instants.
    Make your own home-made sauerkraut and take turmeric to help the intestinal healing process & protect against that higher risk of cancer that celiac's presents.
    Self-given (Cheap) Vitamin B shots help me immensely with the horrendous "Neuropathy, " both the pins & needles effect in my hands & feet, but also with the "Absent minded professor" feeling from the endomorphines from the brain being released. Not to mention, a TRUE relief from the associated arthritus.

    January 28, 2011 at 23:34 | Report abuse | Reply
    • shauna

      Re: distilled vinegar – frankly, that is such a misleading label it makes me grind my teeth in frustration at the food industry and our labeling laws. The vinegar isn't distilled – it's made from distilled alcohol. Which the companies then add crap to and never distill it again. Usually it's only yeast that they add, but a lot of yeast these days has starch added to it at the end of processing, just before drying. Typically, corn starch or corn meal, actually.

      If you're very sensitive to the starch used in the yeast, even distilled vinegar can make you sick.

      January 31, 2011 at 00:30 | Report abuse |
  27. lindanancy29

    Oh wow, I have gotten about 3 or 4 different samples from major brands. It is not difficult to find them. Search online for "123 Get Samples" you can find them easily.

    January 29, 2011 at 01:54 | Report abuse | Reply
  28. PB

    When I found out it was in my family I started looking back to see if I had been affected due to fatigue that had grown worse. In retrospect, around 20-21 yrs of age I noticed something not right and it continued until around 25 until I went on the gluten free diet. Everyday for a week I woke up feeling awake and not groggy, I felt like my body was sweating out toxins for about a week and have felt better every since. I noticed immediate affects if that helps anyone else.

    February 2, 2011 at 13:51 | Report abuse | Reply
  29. Stephanie

    There are some great food blogs offering support for people with celiac disease and gluten intolerance. I especially like Gluten Free Girl and the Chef (www.glutenfreegirl.com) and Gluten-free Goddess (which is also vegan, http://www.glutenfreegoddess). And, I take requests on my blog if you have favorite recipes you need renovated to make them gluten-free (www.reciperenovator.com). Hope this helps!

    February 2, 2011 at 16:35 | Report abuse | Reply
  30. JB

    Elizabeth,
    I think it was you looking for someone in the Atlanta metro area? Dr. Cynthia Rudert is a gastro who I THINK practices out of ATL. She is a nationally respected celiac expert.

    Good luck!

    February 16, 2011 at 02:14 | Report abuse | Reply
  31. Celine Bowdwick

    Eating gluten free is even good for those who don't have celiacs disease, although I say if you don't have it you should eat a little bit of wheat every now and then!

    http://www.greattobegluten.com/

    September 30, 2011 at 01:59 | Report abuse | Reply
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    January 5, 2012 at 09:10 | Report abuse | Reply
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  34. rprasad12

    At least 4 recent studies (with a large number of subjects) have found that a gluten-free diet doesn't help a significant number of celiac patients:

    http://blog.scdrecipe.com/2012/12/07/gluten-free-not-working-for-celiac-disease-youre-not-alone/

    December 7, 2012 at 15:40 | Report abuse | Reply
  35. Tawana Appelbaum

    i always take organic vitamins because they do not contain dangerous solvents and chemicals.';,:

    My current internet page
    <http://healthmedicine.co/index.php/

    June 30, 2013 at 11:29 | Report abuse | Reply

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