This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Let me correct one thing you said about Pataprozole as this is a medication I also am on and have been for a long time to treat acid reflux. It's a proton pump inhibitor type acid reducer and doesn't need to be taken before meals. It's not an acid neutalizer. I take 40 mg in the morning after breakfast and it works quite well for controlling my GERD. It is also used to treat peptic ulcers.
I sympathize with you in your frustration about the inattentiiveness of your physician. Changes in the medical delivery system here in the USA have caused primary care physician patient care loads to increase dramtiacally. Now, the doctor has his hand on the door knob as he talks to you, trying to hurry the interaction along in order to get to the next patient.
What you describe sounds like it could be a nutrient deficiency like low magnesium or one of the B vitamins. Celiac disease results in the mal absorbing of nutrients because of damage to the micro villi that line the small bowel. There is also something called restless body syndrome that is rather a mystery (similar to restless leg syndrome). My wife takes ropinirole for restless leg. It helps.
Hello, Joy. I know it must be frustrating to have so going wrong with you and never seeming to climb out of the hole.
I work in a healthcare setting and I can tell you many medical professionals suspect you may never really get rid of MRSA once you have it. You an beat it back so that it goes into hiding ("colonizes") but it's hanging around waiting for an opportune time to make a comeback.
Keep your immune system strong through healthy eating and regular exercise. Sounds like you're immune system may be on edge as well with the high ANA and sometimes short-term immuno-suppressant therapy can help with that.
Okay then, its the ELISA test. When you get the results, don't take it as absolute gospel. There are a number of problems with ELISA testing that can produce inaccurate, misleading results. You should do some research on this issue on the internet. What is really telltale in this regard is if you were to have your blood sample sent to several different labs. What you find is that the results from each lab can vary considerably. The other big issue withe ElISA testing is that the lab results often don't correlate well with what you actually experience in real life symptomatically. For instance, the ELISA test results may indicate you have a strong allergy to peanuts. But when you eat peanuts you suffer not ill effects. Or it may indicate that your are not allergic to soy but you know that every time you use soy you get a gut ache, diarrhea or nasal congestion. So with ELISA testing there can be and usually are some false positives and some false negatives.
Having said all that, there is value in ELISA testing. It's a place to start. It gives you things to look for and to challenge or test in your actual day to day eating habits. ELISA testing is more valuable if you can afford to have blood samples drawn and sent more than one lab so you have results from more than one source to compare and contrast.
Basically, Celiac Disease is an "auto immune" condition, meaning the body attacks its own tissues. In this case, we know that gluten triggers the body's immune system to attack the lining of the small bowel. The lining of the small bowel, when looked at under a microscope, is normally a highly textured surface with lots of little finger-like projections sticking up into the open area of the bowel similar to how stalactites and stalagmites line the walls of an underground cave. This creates a lot of surface area for the absorption of nutrients from the digested food as it passes from the stomach on its way to the large intestine. The immune system's attacks when gluten is ingested by a person with Celiac Disease destroy this texture over time and wear down the finger-like projections, thus greatly reducing the surface area where nutrients are absorbed. Instead, they pass on to the large intestine and are eliminated from the body in stool.
Theoretically, once you eliminate gluten from the diet the lining (i.e, "mucosa") of the small bowel heals and symptoms disappear. In real life this doesn't always happen as neatly and completely as we would like. There can be and often are several reasons for this:
1. Age. Celiac disease research has shown that going gluten free brings healing much more reliably in young people. After about age 35 the rebound of the SB mucosa doesn't happen as well. Age also has an adverse effect on healing in many or most diseases so this is not surprising.
2. Permanent damage to other physiological systems because of the length of time it takes to diagnose Celiac disease. It takes on the average 10+ years to diagnose celiac disease. Thus, nutrient deficiencies and other spinoffs of celiac disease damage organs and nerves over time and this may not be entirely reversible. The best example of this is bone density loss.
3. The great challenge of eliminating gluten from the diet. Most of us, despite all our efforts, still get "glutened" now and then. It is said that it only takes an amount of gluten the size of a quarter of a grain of rice to precipitate an auto immune Celiac attack in some people. These attacks can last for days or weeks. Gluten is not only in foods but in personal hygiene products and medicines, things that go into our mouths that you would never suspect as containing wheat products.
4. And then there is something called "refractory sprue" or Celiac disease that does not go into remission when gluten is eliminated. It does not respond to the usual anecdote of going gluten free. A certain percentage of Celiacs have this form. Its a mystery and doctors don't know why.
Having said all that, it's easy to get discouraged and just give up on going gluten free. But its really the only choice you have if you're a Celiac. Even if it only brings partial improvement we all have an obligation to do what we can do. If we will do that perhaps we can head off some of the problems that would accrue if we just ignore it. And, there is a lot of research being done on cures for celiac disease these days. Sooner or later someone will come up with something that's pretty effective I think.
Shortly after being diagnosed with celiac disease and going gluten-free almost 10 years ago now, I began to notice that whenever I ate a large serving of eggs I would get a bad belly ache. I can eat up to one egg with no problem but not two or more. The odd thing is I had eaten eggs all my life to that point and never had a problem.