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  1. Yes, I had mouth ulcers, too, as a symptom of vitamin deficiencies. But the sores got much less numerous and frequent after adding Bronson's Super B's along with the Therapeutic Formula of vitamins and minerals...and then, totally went away after we discovered the celiac disease -- except, of course, if/when I get accidently glutened.

    It is essential that we Celiacs take added vitamins and minerals to offset any nutritional deficiencies either because of malabsorption or because of a compromised diet. So, adding a Super B vitamin to you regime could be very helpful. It's nice to know that B vitamins are water soluble and so are not toxic in large amounts - in excess they just wash through your system.

    By the way, Bronson vitamin and minerals are sold in many USA medical schools. I buy them over the internet at: www.bronsonvitamins.com But, I am sure there are lots of other equally good companies out there.

    This particular company was recommended to me when I was a research subject for many years with the Clayton Foundation Nutritional Research Project at the U of TX, Austin. Unfortunately, the foundation has lost it's funding and are no longer operating. But, they were a fabulous help to me all those years when the medical community was ignorant about celiac disease. In fact, they are the ones who told me I was very vitamin deficient and also discovered the fructose intolerance.


  2. Yes, there have been times when I was angry, too. I have had digestive problems since birth [1942] with classic-textbook like celiac disease symptoms and still no doctor ever suggested celiac - even 3 gastro's I saw over the years. It is maddening! Because of my experience, I don't fully trust doctors concerning this disease, even now. The only way to protect yourself is to keep up with the latest medical research and share the articles with any doctor who seems at all interested. Anyway, we didn't figure out the connection for me until about 6 yrs ago, following a couple of emergency room visits with intestines almost swollen shut. Both episodes were very painful + really scary. Since starting the gluten-free diet there has been remarkable reversal of symptoms. Of course, since no one caught it earlier, there probably will always be some residual problems...like significant osteoporosis. I am just so thankful for the internet and this + other celiac sites so that we can keep informed, educate those who need to know, and support one another. It's so nice to know we are not alone!


  3. I'm one of those with Celiac, Sojgrens, and Hasi-hypothyroid - all AI diseases. I also have some mild joint achiness from time to time, but have yet to figure out what triggers it at those times when I'm pretty sure I haven't been accidently glutened. Anyway, I had one episode a couple of years ago of some joint swelling with an elevated Rheumatoid Factor and another test that was positive for inflammation. [Not sure which one it was]. So, my GP sent me to a rhemy who ran all the Rheumatoid Arthritis tests and decided that, luckily whatever it was, it wasn't RA. So, I'm guessing that those tests can be positive just because of the celiac disease and Sojgrens? [Fortunately, haven't had another joint swelling episode]


  4. I had a similar experience as WhenDee. I had seen 3 gastros over the years + and many other doctors who were all clueless. They would treat a symptom and never see the big picture. So, I was told IBS, lactose intolerance, etc, etc...like many others. About 8 yrs ago, I was visiting a son and daughter-in-law and had one of my usual digestive disorder episodes [i spent 3 days in the bathroom and in bed sleeping off the extreme fatigue]. She has her PhD in molecular biology and after researching possibilities on the internet, she began asking me questions. It then became SO obvious that I have a "textbook case" of celiac disease as I can pretty well check off all the symptoms on the list: underweight, frequent nausea following meals, episodes of vomiting and D, intestinal cramps and pain, mouth ulcers, vitamin deficiencies + anemia, neurological problems [carpel tunnel surgery on both hands + migraine-like auras, now a few brain lesions], joint pain, depression when episodes hit, even been in the emergency room with my intestines almost swollen shut and the doctors threatening to take out part of my intestines. I always tell doctors that I have digestive problems. I have had this since I was a baby, but now I'm in my 60's! Why no doctor ever even suggested celiac disease to me or tested for it, I have no idea? By this point, I was so fed-up with doctors who continually either brushed me off or ignored my symptoms as "something else" that I decided to try the gluten-free diet on my own. WOW! What a difference the diet made!!!! I will NEVER go back to eating gluten again! Not surprisingly, 8 years ago I told my GP about my new diet. {His way of dealing with my "episodes" up to that time was to give me prescriptions for Lomotil with Phenobarbitol every so often for when it was "really bad".} THEN, he insisted on doing a blood test after 3+ months on a gluten free diet. Of course, it was negative! So, he said, "You obviously don't have celiac disease. Go back to eating wheat." Needless to say, I have since changed doctors. And, considering how horribly sick I get, I will never agree, at this point, to do the gluten challenge for the biopsies. The bottom line is: if the diet eliminates all the symptoms, you KNOW what the diagnosis is!


  5. ANYONE ELSE GET A FLAT CURVE GLUCOSE TOLERANCE TEST RESULT? Over many years I have had three 6-hour GLUCOSE TOLERANCE TESTS because when I mention that sugar makes me sick to my stomach, that is the first thing a new doctor wants to do. They always think it might be Diabetes. And every time I get a FLAT CURVE result. I have been told it is a failed test, even that I didn't really drink the sugar drink when the tech watched me drink it! I have even been accused of vomiting it up in secret! Recently while researching, I ran across a lab manual that states that Malabsorption can be one of the many causes, and even mentions Celiac. Now, I'm just curious if anyone else has had this experience? I suppose it could be considered just one more "symptom" of celiac disease.


  6. MANY OF US WITH celiac disease/GLUTEN INTOLERANCE HAVE BONE DENSITY ISSUES. I THOUGHT THIS ARTICLE WAS SOMETHING OTHERS MIGHT WANT TO BE AWARE OF TOO. I HAVE CERTAINLY CUT WAY DOWN ON THE FREQUENCY I DRINK SODAS THESE DAYS AFTER READING THIS.

    CARBONATED COLA DRINKS DROP BONE DENSITY IN WOMEN

    By Judith Groch, Senior Writer, MedPage Today

    Published: October 06, 2006

    Reviewed by Zalman S. Agus, MD; Emeritus Professor at the University of Pennsylvania School of Medicine .

    Primary source: American Journal of Clinical Nutrition

    Source reference: Tucker, KL, et al "Colas, but not other carbonated beverages, are associated with low bone mineral density in older women: The Framingham Osteoporosis Study" Am J Clinical Nutrition 2006; 84: 936-942.

    The findings from the Framingham Osteoporosis Study did not extend to men or to non-cola carbonated beverages, and the reasons for bone loss remain uncertain, according to a report in the October issue of the American Journal of Clinical Nutrition.

    Several studies have examined the association between carbonated beverages and fractures in children and adolescent girls, but few have studied adults, said Katherine Tucker, Ph.D., of Tufts University here, and colleagues.

    Because bone mineral density is strongly linked with fracture risk, and because cola is a popular beverage, these findings are of considerable public health importance, Dr. Tucker and colleagues wrote. Although occasional use of carbonate cola beverages is unlikely to be harmful, she said, "women who are concerned about osteoporosis may want to avoid the regular use of cola beverages."

    In the Framingham study, which included 1,413 women (ages 29 to 83) and 1,125 men (ages 35 to 86), bone mineral density was measured by dual-energy x-ray absorptiometry at the spine and three hip sites.

    Both men and women tended to be overweight, former smokers, and to consume alcohol moderately. Mean calcium intake for men and women was lower than the current recommendations. Of the women, 80% were postmenopausal, and 29% of these used estrogen.

    Mean intake of carbonated beverages was six servings a week (one glass, bottle, or can) for the men and five servings for the women. Cola was the most common choice at almost five servings for men and four for women. Women were equally likely to consume caffeinated and non-caffeinated cola, but were more likely to drink diet cola (2.7 diet compared with 0.9 non-diet servings a week), although intakes were variable. Non-cola soft drinks were either sugared or diet products.

    Non-cola carbonated-beverage intake did not decrease BMD in either men or women, the researchers reported.

    However, cola intake had a significant effect on BMD. Cola drinks were associated with significantly lower (P<0.001-0.05) bone mineral density at each hip site, but not the spine, in women but not in men, the researchers reported.

    The mean BMD for women with daily cola intake was 3.7% lower at the femoral neck and 5.4% lower at Ward's area than the BMDs for those who consumed less than one cola beverage a month.

    Similar results were seen for diet cola and, although weaker, for decaffeinated cola, approaching significance (P<0.1) at total hip and femoral neck. Compared with decaf cola, total caffeinated cola was more strongly associated with hip BMD (P<0.01-0.001) and Ward's area (P<0.05).

    Additional analysis of cola subgroups for the women showed that the trends were not unique to the sugared, caffeinated colas, but were evident for all subgroups tested, with the exception of sugared decaf soda, women's least popular drink favored by fewer than 16%.

    Compared with the recommended daily intake of 1,200 mg, women's calcium intake (1,000 mg/d) was lower, and although total phosphorus intake was not significantly higher in daily cola consumers than in non-consumers, the cola-drinkers' calcium-to-phosphorus ratios were lower, a possible significant finding, according to the researchers.

    Reviewing the possible causes for these associations, Dr. Tucker turned first to calcium intake and the possible displacement of milk and other beneficial foods by the sodas. Although cola consumers drank less fruit juice, adjustment for total juice intake (or total fruit and vegetable intake) did not significantly change the results, she said.

    The consistency of bone density findings across cola types, including calcium intake, suggests that the results are not due to elimination of milk or other healthy beverages in the diet, the researchers said. Nevertheless, they added, total calcium intake was lower among women who consumed the most cola drinks and may affect bone density.

    The caffeine content of the drinks may also contribute to lower BMD, the researchers said. The results were consistently stronger for caffeinated cola versus the decaf version. However, the caffeine factor remained in play. Although adjustment for caffeine from other sources attenuated the association with decaf drinks, it did not entirely eliminate caffeine. The remaining significance, the investigators said, may be due to yet unexplained actions of phosphoric acid.

    Although adjustment for overall daily calcium-to-phosphoric acid, did not significantly change the results, it is less clear how regular use of a beverage containing a dose of phosphoric acid with no calcium and no other basic forming or neutralizing components, may affect BMD over long-term exposure, the researchers said.

    Phosphoric acid in the gut may form a complex with dietary calcium to block absorption. Although high phosphorus and low calcium may lead to changes that cause bone resorption, the amount of phosphoric acid in cola may be insufficient to cause these changes, they said.

    It remains unclear whether regular exposure to phosphoric acid without exposure to calcium or other beneficial nutrients causes bone loss over time. More research on the potential mechanisms by which phosphoric acid may affect bone is needed, the investigators said.

    Commenting on the lack of association between cola drinks and BMD in men, the researchers suggested several possibilities. Girls' and women's smaller bones would make them more sensitive to nutritional insult, whereas the higher levels of physical activity in boys and men might be protective. Hormonal interactions may also contribute to these differing results by sex, but here, too, additional research is needed, they said.

    Summing up, Dr. Tucker's team first noted that further studies are needed to confirm these findings.

    A greater intake of cola was not associated with a significantly lower intake of milk, the researchers said. As for caffeine, it can take some, but not all, of the blame. Results were consistently stronger for intake of caffeinated cola. However, low BMD remained even after adjustment for caffeine intake, and some associations with decaffeinated cola remained.


  7. Here is what I do when traveling and will need to visit restaurants with fellow travelers. I always carry small pull-tab cans of tuna fish. Then, I order a plain veggie salad [for example: Subways are found everywhere, frequently even in airports] and order it with a simple dressing [oil+vinegar or just squeezed fresh lemon]. I carry gluten-free crackers/pretzels or buy basic potato or corn chips. Sometimes restaurants have simple grilled chicken breasts and steamed veggies which are another choice. Otherwise, I make my own safe trail mix of nuts and dried fruits, a bag of prepared carrot sticks and/or celery sticks, Kind or Laura bars and anything else "snacky" you like. Hope this helps.


  8. I am an American living in Panama with celiac disease. There is a new organization here that is from South America. Search "Fundacion de Celiacos de Columbia" and see what you can find out. I wouldn't be surprised if there is a branch of this international group there in your country.


  9. BLOOD TESTS for FOOD ALLERGY FOUND INACCURATE

    Primary source: Journal of Allergy and Clinical Immunology

    Source reference:

    Spears G, et al "Over-reliance on serum testing for IgE to food allergens results in inappropriate food elimination diets" J Allergy Clin Immunol 2009; 123: S179.

    By John Gever, Senior Editor, MedPage Today

    Published: March 16, 2009

    Reviewed by Zalman S. Agus, MD; Emeritus Professor

    University of Pennsylvania School of Medicine.

    WASHINGTON, March 16 -- Common blood tests for food-specific serum immunoglobulins are often wrong about allergies and aren't a good basis for restricting youngsters' diets, researchers said here.

    Results of supervised oral food challenges in 125 children failed to support most diagnoses of food allergies made on the basis of serum IgE testing, David Fleischer, M.D., of National Jewish Health in Denver, told the American Academy of Allergy, Asthma, and Immunology. These challenges -- in which children observed by professionals are fed increasing amounts of suspect foods over time to gauge their reactions -- were performed on 63 foods being withheld from the children. Of those, 57 were negative. Dr. Fleischer and colleagues concluded that, in the absence of anaphylaxis, oral food challenges should be used to confirm food allergy status. Unfortunately, physicians say, these tests are expensive, time consuming, and may require the facilities of a specialized center.

    The Denver study included one boy who had 32 different foods removed from his diet, leaving him unable to eat any ordinary foods. He has passed all 25 food challenge tests performed so far, and is now eating relatively normal meals with his family, Dr Fleisher said. Dr. Fleischer said the boy will undergo additional challenges on more foods. He said the child probably has some genuine food allergies and will require some dietary restrictions.

    The investigators did not perform food challenges in children with diagnosed tree-nut allergies. Nor did they conduct challenges for other foods when the children had "convincing" previous evidence of reaction or extremely high food-specific serum IgE levels. Consequently, few children with diagnoses of peanut allergies and none with soy allergies underwent food challenges. However, in five challenges that were performed on children with putative peanut allergy, all had negative results.

    Food challenges were most likely to confirm serum IgE-based diagnoses of wheat allergy. Of six oral food challenges performed, three were positive and three were negative.

    In most other cases, the oral-challenge produced negative results, and children were able to resume eating those foods. Dr. Fleischer said the chief problem with moving toward the more accurate food challenge is the wide commercial availability of IgE-based food allergy diagnostic panels. Melanie Gleason, P.A., of National Jewish Health, who also worked on the study, said parents and community physicians are often too quick to remove food from a child's diet after a positive result from these tests.

    Dr. Fleischer said serum IgE is only partially reflective of actual allergy, and that children often have high serum IgE levels across the board. That can lead to positive results for a given allergen even though the child can, in fact, tolerate the food. As a result, food allergies should be confirmed with supervised food challenges, he said, particularly when children are being subjected to life-changing dietary restrictions.

    Hugh Sampson, M.D., an allergist at Mount Sinai School of Medicine in New York, agreed that food challenges are needed to confirm initial diagnoses. "Too many people are relying on a blood test or a skin test, which do not have a high level of specificity," he said. "They [only] tell you what to suspect." However, Dr. Fleischer said medically supervised food challenges are beyond the capabilities of most community allergists or primary care physicians. He recommended that patients be referred to specialized centers, he said. Dr. Sampson noted that there is a small amount of risk in such testing, and it can be expensive and time-consuming.


  10. Wow, you can loose weight on this diet? Since going gluten free, I have gained weight and have a normal weight for the first time in my life. I was always underweight before - I weighed only about 98-102 lbs for many years at 5'3'' [except when pregnant]. Always had problems with being anemic, spells of D and vomiting, nausea, apthus mouth ulcers, vitamin deficiencies, under-active thyroid, and neurological problems + later osteoporosis. Now I weigh 123-126 lbs and am active, swimming laps everyday, and in great health at 68 yrs young. Also, for the first time in my life I have to watch what I eat so I don't gain weight!


  11. In the early 1960's I stayed with a family in Georgia and they told me, "Honey, ya'all can eat yo grits anyway ya'all like em...their jus' de-licious any ol' waaay!" We had them every morning with eggs and "side bacon". Being from the west coast of the US, it was like being in a foreign country staying them. We had fried chicken every Sunday, and either went "a-callin" with gloves and hat after church or folks came "a-callin'" us. In mid-afternoon, we had a late lunch [lunch was called "dinner", dinner called "supper"] The daughter and I being teenagers at the time, played our part as "tea girls", serving the ladies who came "a-callin'" tea, coffee and sweets. We were to remain quietly in the background, unless spoken to, and always were to answer with "Yes Maam"..."No, Sir". This was completely foreign to me being from the laid-back west coast. It all seemed so quaint and old-time'y -- like turning back the clock to the 1800's. It was quite charming and a real education!


  12. THIS IS A PROFOUND STUDY OF SPECIAL INTEREST TO THOSE WHO FALL INTO THAT SHADY AREA OF THOSE WITHOUT PROVEN INTESTINAL VILLINOUS ATROPHY, YET THRIVE ON A GLUETEN FREE DIET. IT CERTAINLY GIVES CREDENCE TO STAYING TRUE TO THE gluten-free DIET AND NOT CHEATING. IT ALSO ARGUES AGAINST DOCTORS WHO INSIST ON TELLING GLUTEN INTOLERANT FOLKS THAT THEY DON'T NEED TO EAT gluten-free BECAUSE THEY REALLY DON'T HAVE CELIAC DISEASE SINCE THEY DID NOT DETECT ANY INTESTINAL SIGNS IN A BIOPSY.

    POTENTIAL CELIAC PATIENTS SHOW SIGNS OF DISEASE

    Primary source: Journal of Proteome Research

    Source reference:

    Bernini P, et al "Are patients with potential celiac disease really potential? The answer of metabonomics" J Proteome Res 2010; DOI: 10.1021/pr100896s.

    By Kristina Fiore, Staff Writer, MedPage Today

    Published: December 17, 2010

    Reviewed by Zalman S. Agus, MD; Emeritus Professor

    University of Pennsylvania School of Medicine and

    Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

    Action Points

    ________________________________________


  13. Digestion starts in the mouth when saliva is mixed with food. Minute food particles begin to pass through the mucous membrane in the oral cavity even before it's swallowed. For an example of this type of absorption, think of the heart patient who has to take nitroglycerine for emergency chest pain. The nitro pill is placed under the tongue for rapid absorption directly into the blood stream. So no, it is not safe to taste and spit out bites of food. Some bakery folks with celiac have even had to change careers because of the wheat flour that becomes air-born when it is added or mixed into batters. Even though the wheat is not ingested directly, it still finds it's way into the blood stream. [Mucous membranes cover all the orifices of the body...mouth, nose, eyes, etc..] Perhaps you could consider becoming a specialist chief, cooking only gluten free food. Sorry to have to relate this sad bit of news, as wish we could tell you differently. But on the other hand...it would be wonderful to have you cook for us! Best of luck as you work through this.


  14. When going to anyone's house where food is involved, I follow two possibilities:

    (1) I eat before I go (if it's only for a few hours)and sometimes take a snack or desert to share with something to drink at the party.

    (2) I TELL (not ASK) the hostess that I am bringing food to share with everyone. If they say, "You don't need to do that", I just say, "Well, I really want to bring something as I am on a very restricted diet and don't want to be a problem for the cook. Plus, I would like to make enough to share with everyone." Don't make a big deal out of it, especially going into detail, unless they ask. And, if they ask, be brief and to the point. Always INSIST on bring food to share. I then make a one-dish casserole type thing and/or a gluten-free-DF desert. I frequently make brown rice + quinoa pilaf with veggies, dried fruit, nuts, and chicken cubes. Everyone always says it's really tasty and fancy. Now, they are even requesting that I make it for all get-togethers! Best of all, I have a full meal dish that's safe and filling for me to eat and one that others enjoy too.

    My feeling is, why be a burden for the cook? As much as people want to cook for you, it is almost impossible for a non-celiac/dairy free person to really KNOW what is safe and what isn't. It is just too easy to be accidentaly glutened by well meaning family and friends. It is so enjoyable to be socially involved, but it's also extremely important to be safe too.


  15. I found this on my local celiac group site and thought the topic of the possible connection between celiac disease and dyslexia so interesting that it needed to be shared with a wider audience. Since we tend to develop neurological problems...I can see where there could be a connection. For example, it was difficult for me to learn to read when young; and then in college had to drop the idea of majoring in English, because I found I couldn't handle more than 1-2 heavy reading classes at a time. They thought it was dyslexia each time...but then I was an undiagnosed Celiac with lots of brain fog. Now on a strict gluten and dairy free diet, the brain fog has lifted and I'm thinking that the dyslexia has improved. So, I am wondering if anyone else had a similar situation and never associated it with the discovery of celiac disease?

    Urine patterns, peptide levels and IgA/IgG antibodies to food proteins in children with dyslexia.

    Pediatr Rehabil. 1997 Jan-Mar;1(1):25-33.

    Knivsberg AM., Center for Reading Research, Stavanger College, Norway.

    Comment in: Pediatr Rehabil. 1997 Oct-Dec;1(4):245.

    Abstract

    There is an association between psychiatric disorders and dyslexia. In some psychiatric disorders abnormal urinary peptide patterns and peptide levels, and elevated levels of IgA antibodies to food proteins have been detected. These abnormalities are probably due to insufficient breakdown of the proteins gluten and casein. The aim of this study was to discover whether such abnormalities could be found in urine samples and serum of children with dyslexia. After screening 291 pupils in the fourth grade, 15 dyslexics and 15 controls were

    pairwise matched by gender, age, and cognitive level. Word decoding, spelling, and short-term memory tests were carried out, and information on handedness, immune and other disorders was obtained. Analyses of 24-h urine samples and of serum were performed. The reading abilities significantly differentiated the groups, and

    significant differences were found in frequency of left-handedness, immune disorders and other disorders. Three dyslexic children had elevated IgA antibodies. Two of these had positive endomycium tests, and coeliac disease was confirmed by biopsy. One had antibodies to proteins in milk. Our findings may suggest weak urinary peptide

    abnormalities in the dyslexic children, and they show significant differences in levels of IgA of antibodies to food proteins.


  16. This very situation happened to me last night when we were invited over for the first time to have dinner in the home of my son's girlfriend. When she emailed me to confirm, I emailed her back the following reply:

    We are really looking forward to seeing everyone later this afternoon! I know cooking for me is such a pain since I can't eat any gluten or dairy. So, I was thinking I would bring something to add to our dinner. I 'm planning on bringing fried rice to share with everyone. I make it with natural brown rice, veggies, and frequently meat. That way it will make planning a lot easier on the cook, plus it's always fun to have something extra to share. See you at 4:00! Linda

    My fried rice is really a meal unto itself. First, cook the rice. Cut up the chicken breast {or other meat of choice] into cubes and marinate while preparing and cooking the veggies. For the marinate, I like a gluten-free soy sauce [bragg Liquid Aminnos is my favorite], a little dried ginger powder, and pepper. Then, in a wok or frying pan saute onion in a bit of olive oil. Add a bag of chopped, fresh mixed stir-fry veggies [or any of your favorite veggies for that matter] to the wok. When the veggie mixture is cooked, but just slightly still crisp, remove veggie mix to another bowl. To the chicken + marinate to the wok with a bit more olive oil and stir-fry. When the chicken is done, add veggies and cooked rice back into the wok and heat through.


  17. Here's something else to think about if you are continuing to have problems even though you are religious about staying on a gluten free diet. Celiac disease falls under the heading of a "Malabsorption Syndrome". It is not unusual for people with celiac disease to also have malabsorption issues with one or more of the following: dairy [all factions of milk] and fructose [found as fruit sugars + long starchy chains of fructose molecules called "Fructans"...found in wheat, plus some other foods. Sorbital, and HFCS are particularly problematic. Look up "Fructose Malabsorption" on the internet for a complete list of offending foods to avoid - be careful not to mix it up with a very serious disease with a similar name, called "Hereditary Fructose Intolerance".]. Two other frequent problem-makers for celiac disease patients are soy and corn. [There's probably others that I am not familiar with.] An elimination diet is probably your best bet for discovering what else it could be besides gluten in wheat, rye, barley...and for some of us, oats. At first, it is best to make a short list of safe foods and stick to it. Then, gradually try adding other individual offending possibilities, one at a time, every 3-5 days, or longer if you tend to have symptoms which are a delayed reaction rather than immediate. It should become very evident what is causing your continuing symptoms. Remember..."a patient can have as many diseases as he/she pleases"...so it could be more than one food causing symptoms. So, continue the elimination diet until you run through all the possibilities. Good luck...this takes some time to do on your own. Unfortunately, not many doctors are very helpful with this or knowledgeable about malabsorption syndromes in general. [i am familiar with Dairy Intolerance and Fructose Malabsorption because I have both as well as Celiac Disease. Luckily so far, corn and soy are not problematic for me.] Sure hope this helps - your situation can be sooooo frustrating! Best of luck, Linda


  18. Here's something else to think about if you are continuing to have problems even though you are religious about staying on a gluten free diet. Celiac disease falls under the heading of a "Malabsorption Syndrome". It is not unusual for people with celiac disease to also have malabsorption issues with one or more of the following: dairy [all factions of milk] and fructose [found as fruit sugars + long starchy chains of fructose molecules called "Fructans"...found in wheat, plus some other foods. Sorbital, and HFCS are particularly problematic. Look up "Fructose Malabsorption" on the internet for a complete list of offending foods to avoid - be careful not to mix it up with a very serious disease with a similar name, called "Hereditary Fructose Intolerance".]. Two other frequent problem-makers for celiac disease patients are soy and corn. [There's probably others that I am not familiar with.] An elimination diet is probably your best bet for discovering what else it could be besides gluten in wheat, rye, barley...and for some of us, oats. At first, it is best to make a short list of safe foods and stick to it. Then, gradually try adding other individual offending possibilities, one at a time, every 3-5 days, or longer if you tend to have symptoms which are a delayed reaction rather than immediate. It should become very evident what is causing your continuing symptoms. Remember..."a patient can have as many diseases as he/she pleases"...so it could be more than one food causing symptoms. So, continue the elimination diet until you run through all the possibilities. Good luck...this takes some time to do on your own. Unfortunately, not many doctors are very helpful with this or knowledgeable about malabsorption syndromes in general. [i am familiar with Dairy Intolerance and Fructose Malabsorption because I have both as well as Celiac Disease. Luckily so far, corn and soy are not problematic for me.] Sure hope this helps - your situation can be sooooo frustrating! Best of luck, Linda


  19. Here's an article from a medical source on the subject of bloating. It sounds like no one knows for sure what causes it. Since celiac disease is an inflammatory disease, it must be an allergic swelling response. Before going gluten free, I have had to go to the ER because my intestines were almost swollen shut [which is a very serious medical situation]. I still experience mild bloating at times, but never again anything like before going gluten-free.

    ARTICLE FOUND AT: http://www.ncbi.nlm.nih.gov/pubmed/12390095

    Aliment Pharmacol Ther. 2002 Nov;16(11):1867-76.

    Review article: bloating in functional bowel disorders.

    Zar S, Benson MJ, Kumar D.

    OGEM Department, St George's Hospital Medical School, London, UK.

    Abstract

    Bloating is a frequently reported symptom in functional bowel disorders. It usually occurs in combination with other symptoms, but may also occur in isolation. The severity of bloating tends to worsen during the course of the day and improves overnight. Although frequently considered to be a subjective phenomenon, recent studies have shown that bloating is associated with a measurable increase in abdominal girth. The pathophysiology of bloating remains elusive, but the evidence supports a sensorimotor dysfunction of the bowel. The possible mechanisms include abnormal gas trapping, fluid retention, food intolerance and altered gut microbial flora. Further studies are needed to define the sensorimotor abnormalities associated with bloating, which might be segmental and transient rather than generalized and persistent. The lack of understanding of this symptom is paralleled by a limited availability of therapeutic options. Conventional medications used in functional bowel disorders are not helpful and may indeed worsen the symptoms. In future, new drugs with activity against serotonin and kappa receptors, or novel approaches such as the use of exclusion diets, probiotics and hypnotherapy, may prove to be useful.

    PMID: 12390095 [PubMed - indexed for MEDLINE]Free Article