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  1. I found what you wrote to be very interesting as I had not thought about the continuum concept in those terms. But, the article seemed to be more about the diagnostic decisions made about what is wrong with a patient. Doctors do seem to see things in black and white when it comes to diagnosis. When in fact, there are degrees of illness which doctors do not always acknowledge. Also, labs like to draw lines in the sand, saying that the patient has a certain disease if numbers go over the line, but don't if numbers fall below it. I think celiac disease is like this. It presents as more of a continuum of signs, symptoms and degrees of illness. We aren't all totally similar in our reaction to gluten, yet we all have a disease state where the consumption of gluten causes illness. Anyway, it's just another perspective from which to try and understand the differences that we see where gluten intolerance is concerned. I hadn't thought about it all in these terms before and found this article enlightening, so thought I'd share.


  2. I ran across an article by Mark Hyman, M.D. practicing physician a pioneer in functional medicine, which was about another autoimmune disorder, diabetes. Since there is some correlation between celiac disease and Diabetes,as both are autoimmune disorders, I thought what he had to say gave some insight to what we are expierencing with celiac disease. At least, it gave me a different perspective on what we are all experiencing.

    The Continuum Concept

    Most medicine is based on clear-cut, on-or-off, yes-or-no diagnoses. Most conventional doctors are taught that you have a disease or you don't, you have diabetes or you don't. There are no gray areas. This approach is not only misguided, it is dangerous, because it misses the underlying causes and more subtle manifestations of illness. Practicing medicine this way completely ignores one of the most fundamental laws of physiology, biology, and disease: The continuum concept. There is a continuum from optimal health to hidden imbalance to serious dysfunction to disease. Anywhere along that continuum, we can intervene and reverse the process. The sooner we address it, the better.

    Are not the manifestations and differences in degrees of symptoms of Gluten Intolerance part of the continuum of celiac disease? In fact, it seems so obvious that it is so, and yet many doctors miss this concept altogether. For example, many doctors dismiss you as NOT having celiac disease if there is no villinus atrophy, not even suggesting a trail run of a gluten free diet.


  3. If you are finding the doctor you go to is frequently refusing to run tests you feel are necessary or not listening to you fully, it might be a good idea to change [primary care] doctors. It is a little known fact that doctors are rewarded by insurance companies for not ordering too many labs or other procedures for their patients. Some doctors are more influenced by this than others, which can cause a conflict of interests as far as you are concerned. Or, it could be that your doctor is not as up-to-date as he/she could be in a particular area. Also, in many parts of the US, specialists will not see you without a primary care doctor's referral. So, if your doctor refuses to refer you..that is another occasion which should ring the alarm that it might be time to seek out a new primary care doctor. For whatever reason, if you feel you are not getting what you are paying for...ask and look around... there are lots of other choices out there. Request a doctor recommendation from the local celiac and/or thyroid group in your area for someone knowledgeable and sympathetic.


  4. I can relate to the extreme pain your husband was in with swollen intestines and visits to the emergency room. No one ever thought of Celiac all those years, so finally had to figure it out for myself. If we had been born European it is far more likely that we would have been diagnosed much earlier, since celiac disease has been commonly treated there, especially the Scandinavian countries, for many, many years -- oh well, we have to live with what is. Sometimes, US medicine is not as great as it is hyped to be. As for the creamy soups....do you have a slow cooker? If not it will be of great help to you by making food prep soooooo much easier. I frequently make soups in mine. I put everything into the slow cooker in the AM and set it to cook on low all day. It's ready after 6-10 hrs, depending on the recipe. There are many easy to put together slow cooker recipes available on the internet. Also, I make 1 cup natural brown rice, 1/4 cup quinoa and 1/4 cup amaranth in the rice cooker [though this may not be on your husbands diet right away] to eat along with the soup. It makes a wonderfully easy and very nutritious meal. If you aren't familiar with quinoa and amaranth yet...you need to get aquainted with these fabulous gluten-free grains, which are two of the most nutritious grains known to man. They are a god-send for those of us with celiac disease. If your husband can tolerate dairy, don't forget custards and puddings, which can be nutritious too. Good luck!


  5. I particularly like BRONSON vitamins and minerals products. They are frequently found in medical school supply stores [where medical and dental students buy their supplies on campus], Whole Foods and like places, besides credible pharmacies. I have been taking their Therapeudic Formula and Super B's for many years. Take a look at their formula called "GLUTEN FREE" and see what you think, it's relatively new and I have just recently ordered it. I plan to take it on those rare occasions when I accidentely get glutened.

    I have them mail-ordered to me from this site: BRONSON


  6. There is such a thing as Fructose Malabsorption [the sugar most frequently found in fruit], which is a digestive disorder of the small intestine in which the fructose carrier in enterocytes is deficient. But, do not confuse FM with Hereditary Fructose Intolerance if you look it up on the internet, cause that's a genetic inborn error that shows up in newborns and concerns a different pathway. FM is sometimes seen along with Celiac and Lactose Intolerance. FM medical tests are similar to the test for lactose intolerance, requiring a hydrogen breath test for a clinical diagnosis. The breath test is simple - you ingest a measured amount of the offending sugar and then breath samples are taken in a laboratory. Sometimes stool tests are done too. In fact, they can check all types of sugars this way and it is simple to do. A big offender in the diet and found everywhere is High Fructose Corn Syrup, which must be removed from your diet. By the way, the symptoms of FM are very similar to the digestive disorder part of Celiac - which could be a possibility for those of us who have continuing problems on a gluten free diet. Hope this helps.

    Check out this site:

    Foods Highest in Fructose


  7. Yes, I sometimes get esophagus spasms too, in the area around the adam's apple. It feels like a charley-horse in my neck and hurts like the devil for a few seconds. I can't swallow, have pain, difficulty breathing, and my eyes water. It make me feel like I want to sit up and stretch my neck, tilting my head back. I don't imagine it lasts even 1 minute, but it sure seems like longer when it happens. Fortunately, these rarely occur. Mostly, doctors have just shrugged their shoulders when I mentioned it, and said they had no idea what the cause was; then bushed me off and ignore it. But, one doctor sent me for a barium swallow. Of course, it didn't show anything as I can't do it on cue...so no medical person ever saw it happen. I think that they think I am making it up.

    I also have a instantaneous spasm in my neck when I take the first swallow of coke cola - very rarely with other soda drinks. But, this kind of spasm doesn't last near as long and involves no pain. I have been accused of burping...but it isn't a burp! I figure that my body is telling me not to drink coke as there is something in it my body doesn't want to accept. Maybe coke has wheat or barley in it - who knows? Soft drink makers are so secretive about their recipes.


  8. How many years have you been trying to live a gluten-free life? 4 yrs gluten-free, but 35 yrs Dairy Free. Had gastro issues since baby.

    How often or many times do you think you've been hit with wheat? Since going gluten-free 3-5 times a year.

    Anyone been diagnosed with cancer, kidney or liver problems? No, but I have had surgery on both hands 3 times for peripheral neuropathy, have brain ossifications in MRI, visual aura without migraine, osteoporosis, joint and bone aching, mild macrocytic anemia off and on, and vitamine deficiencies at times.

    Have you ever said "what the hell" and just ate something you aren't supposed to? No, I just get so sick that it is not worth it.

    What is your age? 66 years young


  9. Jason what an awful experience! I can really relate after the hard time I had in France trying to find enough safe food too, since I have both gluten and dairy intolerance. They put dairy in everything! Discovered that the large markets had deli's with Middle Eastern choices + they had some items that had multi-language ingredient labels as many do here in the US. So, I ate often from what I could find in the markets. Otherwise, it was salads, cans of fish, and raw fruits and veggies + apple juice. I lost weight too, but some of it was from all the walking. None of the other countries we visited were as bad as France. Sure do wish you lots of luck with your job and having to travel with it. Hopefully, someone on the board will be able to guide you if you need to return to France anytime soon.


  10. I just don't see this kind of differentiation in the literature coming out of Europe between Celiac and GI. European doctors and researchers have been on the Coeliac band wagon a lot longer than it has even been on the radar in the US. Personally, I am not so sure that there is really that much of a difference between all the symptoms that make up what European's refer to as the Gluten Intolerance Syndrome. And, it really seems to be a syndrome, not a collection of independent diseases.

    These endoscopy tests are not all that reliable folks - although I know you would like them to be - it's only as good as who does it [did they take sufficient samples and were they lucky enough to find the spotty evidence ?] and who reads it [how experienced and thorough is the lab who read your slides?]. They don't have all the answers yet. So, it seems like you are putting a lot of faith in someone and something that is far from 100%. If you are gluten intolerant, then you are Gluten Intolerant with or without lab varified villi blunting. Remember that nothing is absolute in medicine. That's why doctors PRACTICE medicine. :)


  11. I have a question about the symptom differences between Gluten Intolerance without villi damage, and Celiac, which is Gluten Intolerance WITH villi damage. Are the symptoms the same for both? For example, do both have intestinal inflammation [swelling] as a symptom? What about some of the more unusual symptoms like peripheral neuro problems, seizures, anemia , or others? I have seen a couple of things on the internet that make me wonder IF there actually are any difference besides the fact that the intestinal villi in one are attacked and not in the other. Perhaps those of you with GI [who have been told that there is no obvious villi damage] can clarify IF there is any real difference between the two types of gluten intolerances.


  12. Is what we have really "Gluten Intolerance Syndrome"? When looking at the definition of the medical term "syndrome" it sure seems a perfect fit. One person may have the villi blunting, another may not, someone else may have Dermatitis Herpetiformis (DH), some have neurological issues, anemia, etc. There is a whole range of symptoms possibilities and associated diseases that frequently accompany it ...but in the end we all have gluten intolerance in common.

    Here are some definitions:

    [http://www.yourdictionary.com/medical/syndrome ] "syn


  13. All of you have some interesting comments and web sites. I really appreciate the feedback. But, still can't help thinking GI is really just a wrinkle of celiac disease, and that it will become obvious after more research is done and more accurate screening tests are developed. [Remember that doctors only "practice" medicine, they still haven't perfected it yet! :lol: ] It seems like so many times it is said that the blood work is negative or inconclusive, the biopsies negative [affected by number and luck of taking samples from diseased sites, and/or ability and thoroughness of the lab reading the samples], yet the diet is very obviously positive. So, the patient is still considered to have celiac disease. It seems like I particularly see this coming from other countries. Is it my imagination or is the idea of GI more a US thing and not so recognized, for instance, like in Europe? Meanwhile, I am still wondering what symptom differences, if there are any, GI patients have in comparison to celiac disease patients. I'm betting there aren't any differences at all, with both groups showing a similar gamut of differing reactions to gluten. The medical literature also says that the extent of damage seen by biopsy does not correlate with the severity of the symptoms. That, in and of itself, says a lot. Much of what I read also says that after all is said and done, the final test is the gluten-free diet itself. So, the patient's improvement on the diet is the final proof of celiac disease. To me that seems to negate the idea of GI altogether. Anyway, it will be interesting to see how this all pans out over time.


  14. Been gluten-free for 3 1/2 yrs [and DF for 25yrs] except for rare accidents. I went on the diet on my own out of pure desperation and frustration with doctors after years of their neglect and lack of knowledge about digestive disorders. The final motivation to hunt for an answer on my own was an ER visit with intestines almost totally swollen closed -- fortunately, I talked the surgeon out of removing part of my intestine at the time. Before starting the gluten-free diet, I could check off nearly all the Celiac symptoms listed, including seizures and peripheral nueropathy. I feel very certain that it is Celiac, and not just Gluten Intolerance, because my symptoms were so dramatic and varied. But, sometimes I think it would be nice to have medical verification. Enterolab looks like a possible alternative to having to go back on gluten for 4-6 weeks so that an endoscopy can be done...but which test do you all recommend in a situation like mine?


  15. Anyone else with Celiac have sever Colic as a baby? I sure did! I just ran across an article that suggested that Infant Colic "could possibly lead to other gastrointestinal conditions in later life, such as irritable bowel syndrome and celiac disease".

    Bacteria May Be Connected to Colic

    http://news.yahoo.com/s/hsn/20090807/hl_hs...onnectedtocolic

    Thu Aug 6, 11:48 pm ET

    THURSDAY, Aug. 6 (HealthDay News) -- A bacterium normally found in the mouth, skin and intestines might play a role in the still-mysterious cause of colic in babies, a new study says.

    Researchers found the bacterium Klebsiella along with gut inflammation in the intestines of all babies in their study who had colic, a condition characterized by uncontrollable crying.

    "We believe that the bacterium may be sparking an inflammatory reaction, causing the gut inflammation," Dr. J. Marc Rhoads, a pediatrics professor at the University of Texas Medical

    School at Houston and the study's lead investigator, said in a news release from the school. "Inflammation in the gut of colicky infants closely compared to levels in patients with inflammatory bowel disease."

    He said colic could possibly lead to other gastrointestinal conditions in later life, such as irritable bowel syndrome and celiac disease.

    Colic, which causes an otherwise healthy baby to cry and scream often and for long periods without any noticeable reason, has no medically grounded treatment or known cause, although bottle-fed babies seem to get it more often than breast-fed infants, according to background information in the news release. The condition often disappears as suddenly as it presents itself.

    "Colic can be a dangerous situation for a baby," Rhoads said. "The parents' frustration over the crying can lead to maternal frustration, post-partum depression and even thoughts of harming the baby." Half of all infanticides are colic-related, he noted.

    The study, published online in the Journal of Pediatrics, included 36 babies, both breast- and bottle-fed. About half had colic. The researchers found that babies without colic had more types of bacteria in their intestines, a sign that certain types of bacteria are beneficial to people, Rhoads said.

    He said the researchers plan further study, involving adults as well as infants, on Klebsiella and on whether probiotics, a dietary supplement of so-called good bacteria, could control the gut inflammation in colicky babies.


  16. I have two additions not mentioned above: Quinoa [a gluten-free grain] and Bragg Liquid Aminoes [helps with digestion, made from soy, used in place of soy sauce as tastes very similar to it]. If quinoa is new to you, as an initiation, try adding it to rice. For example, 1 cup of brown (or white) rice + 1/4 cup of quinoa in your rice cooker. It adds a nutty taste to the rice and LOTS of extra nutrition. Be sure to look for pre-washed quinoa, like Ancient Grains brand - it makes cooking it a lot easier. Another favorite is quinoa and black beans cooked with celery, onion, green pepper, and spices. In fact, I add a bit of quinoa to all my homemade soups and chili's. The nutrition value is very much like whole wheat, but even better...and NO GLUTEN.


  17. Here is a good definition and discussion on what Peripheral Neuropathy is all about:

    Wikipedia - Peripheral Neuropathy

    Fortunately, not everyone experiences PN with connection to celiac disease - when it does occur, it is usually with long standing, untreated and undiagnosed celiac disease. Personally, as far as PN is concerned, I have had Carpel Tunnel surgery on both hands, plus nerve entrapment surgery on one thumb. There have also been times when I have had tingling and pain sensations in my feet.

    Hope this helps.


  18. For years my GP, and then a Gastro, both gave me a prescription for Lomotil with Phenobarbitol to keep on hand, saying that it was IBS. Eventually, I discovered that I needed to quit eating and just live on liquids for 2-3 days. then 1-2 days of white rice and applesauce, followed by gently starting back on a regular diet. It was the only thing that kept me out of the ER when I was having excessive diarrhea and projectile vomiting episodes. Now we know it's Celiac, and the very infrequent glutening episodes are usually far milder because I am sooooo careful what goes into my mouth. So, I also recommend lots of rest, green or mint tea, chicken broth, and ginger ale. Also, eat papaya fruit. It really helps as it has natural digestive enzymes and it usually takes away the dull achy pain for a while. Really, the bottom line besides a bland diet, is that you have to just wait it out. Unfortunately, there is no magic cure. It takes time for the gut to heal and for the swelling to go down.


  19. We discovered the Dairy Intolerance long before realizing the Celiac. I had problems as an infant shortly after coming home from the hospital. Evidently, it never went away and came back with a vengeance in my twenties; it appears to be both dairy factions, sugar and protein. I also have a sugar problem in general. Candies or other sweets cause tingling and make my mouth and throat sore, plus cause intestinal spasms sometimes. Coca Cola, and some other sodas make the muscles in my throat spasm too [i do not mean "burp"!], just with the first sip or two. It is really weird! I have never met anyone else that has that reaction to colas.

    I have read that Lactose and Fructose Malabsorption are both common with Celiac. Interestingly, Fructose Malabsorption folks also are sensitive to wheat (but not rye or barley). FM causes similiar gastrointestinal symptoms to Celiac. A gluten-free diet is recommended for FM folks. Doctors do not know much about it, so it is very hard to get them to even look at it as a possibility. If you look up FM on the internet, be careful that you do not read the Hereditary Fructose Intolerance, as the names are so similar. This is a totally different "puppy-dog". Also, it is interesting to know that other food intolerances can cause intestinal blunting similar to what is seen by endoscopy in Celiac.


  20. Contemplating a possible career change because of a health issue is a REALLY HARD decision to make, especially if you love your career. I had to make that decision years ago after having carpel tunnel surgery on both hands as a Dental Hygienist. It probably was related to Celiac and Hypothyroid, though no medical person at the time associated it with either of those, since no one thought of either disease as a diagnosis. Anyway, I did eventually change to teaching. As for the gluten and casein combination...yes, symptoms can overlap. I have found that I need to eliminate all dairy [it seems to be more than just lactose intolerance] in everything I eat along with the gluten. I seldom get sick from mistakes anymore. But when I do, it can be anywhere from mild symptoms, only lasting a day or two, to a sever reaction, lasting over a week or more. At it's worst, I find the best thing to do is to stop eating solid food for a couple of days, and only consume liquids. The liquids seem to give the intestines a chance to rest and heal. I follow this for a day or two with white rice and applesauce. Then, I gently go back to a regular diet. Hope this helps you.


  21. At the very beginning it helps to remember "KISS" [Keep It Simple Stupid]. Don't panic, just don't eat any preprocessed food until you learn more what is safe and where to go that you can trust not to get glutened. To start off, buy every thing fresh and make it yourself with the simplest of seasoning. For instance, fry/grill/bake meat or fish with olive oil, salt and pepper, bake a potato or rice, steamed or baked veggies, make a salad with just olive oil and lemon juice as a dressing, then cut up some fresh fruit for desert. For breakfast there is always rice and egg [it's still one of my favorites!] or buy one of the new Chex gluten-free cereals with milk, if you are a partaker of dairy. After a while you can branch out to gluten-free breads, pancakes, waffles or many fancy concoctions, like apple crepes [yummo!]. Early on, when out with friends, if I didn't feel sure, I ordered a plain veggie salad and ask for the olive oil and lemon juice, then filled in with food once I got home. Just keep in mind that the simpler you make it the better. Soon, you will be indulging in all sorts of great gluten-free things and realize that this isn't so hard after-all. I started a special file on the computer where I compile gluten-free-DF recipes which I continually add to. There's a folder for each catagory...even a folder that I put all the notes from folks about good places to eat, what to order there, addresses, who to talk to, and email links. It has really been a great help! It is really over whelming at first, but it does get to be second nature with time. Good luck and remember all the members here are VERY helpful and full of great advice. You are not alone!


  22. I should have posted this here instead of under another topic. So, please excuse my adding it again, if you saw it before.

    QUOTE (bittykitty @ Jul 12 2009, 02:43 PM)

    Why should I trust the medical community when they had so many chances in the past to catch it,but couldn't?

    Oh! Right on!!! I feel the same way. I am so frustrated with the medical community and the way I have been treated [or more correctly "ignored"] concerning my digestive problems since I was an infant... for over 60+ yrs. Many, many doctors had a chance to catch it...but NOT ONE of them ever so much as mentioned the possibility of celiac. Oh, I have heard "pyschosomatic illness", "nervous stomach", "IBS"- a number of times, and "lactose intolerance"...mind you, all without any testing! So, out of necessity, I am self diagnosed, too -- not because I didn't want a medical diagnosis or try to seek one, but because I never found a doctor that knew anything about digestive disorders [that included 3 gastroenterologist] or one that was interested enough to try and help me figure out what was causing my problems. Now, that the medical establishment is waking up to Celiac, I just can't justify to myself why I would want to submit to the torture I would have to go though by going back on a gluten inclusion diet, just so some doctor "might" see something on an endoscopy test or in blood work. Since beginning the gluten and dairy free diet, for the first time in my life: I have gained a normal weight, have no more mouth ulcers, no more nausea from meals, no more diarrhea and projectile vomiting episodes, and especially, no more ER visits doubled up in pain because my intestines are so swollen they are almost totally closed, etc..... [The only thing I ever found that ended one of these dramatic episodes was to quit eating for 3 days and live only on liquids...followed by 2 days of rice and applesauce...then, gently start back on "normal" food..that is, until the next episode hit. I never did have symptoms continuously. It was episodic and seemed to be more of a delayed reaction that would build up over days. So, it was really difficult to pinpoint the exact cause.] I really could have used some help with professional medical intervention...instead I suffered for years until I decided to try the diet on my own after discovering Celiac on the internet. What a dramatic difference the diet has made in my life!


  23. Why should I trust the medical community when they had so many chances in the past to catch it,but couldn't?

    Oh! Right on!!! I feel the same way. I am so frustrated with the medical community and the way I have been treated [or more correctly "ignored"] concerning my digestive problems since I was an infant... for over 60+ yrs. Many, many doctors had a chance to catch it...but NOT ONE of them ever so much as mentioned the possibility of celiac. Oh, I have heard "pyschosomatic illness", "nervous stomach", "IBS"- a number of times, and "lactose intolerance"...mind you, all without any testing! So, out of necessity, I am self diagnosed, too -- not because I didn't want a medical diagnosis or try to seek one, but because I never found a doctor that knew anything about digestive disorders [that included 3 gastroenterologist] or one that was interested enough to try and help me figure out what was causing my problems. Now, that the medical establishment is waking up to Celiac, I just can't justify to myself why I would want to submit to the torture I would have to go though by going back on a gluten inclusion diet, just so some doctor "might" see something on an endoscopy test or in blood work. Since beginning the gluten and dairy free diet, for the first time in my life: I have gained a normal weight, have no more mouth ulcers, no more nausea from meals, no more diarrhea and projectile vomiting episodes, and especially, no more ER visits doubled up in pain because my intestines are so swollen they are almost totally closed, etc..... [The only thing I ever found that ended one of these dramatic episodes was to quit eating for 3 days and live only on liquids...followed by 2 days of rice and applesauce...then, gently start back on "normal" food..that is, until the next episode hit. I never did have symptoms continuously. It was episodic and seemed to be more of a delayed reaction that would build up over days. So, it was really difficult to pinpoint the exact cause.] I really could have used some help with professional medical intervention...instead I suffered for years until I decided to try the diet on my own after discovering Celiac on the internet. What a dramatic difference the diet has made in my life!