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
Villous atrophy confirmed by biopsy is the "gold standard" when it comes to a diagnosis of Celiac Disease. And as someone else already mentioned, the only other thing that could cause it would be dairy, soy or corn intolerance. Lack of improvement on a gluten-free diet would only point to the need to remove more foods from your diet.
I also agree that normal Vitamin B-12 and Vitamin D levels are not a contradiction of the diagnosis. Vitamin D is mainly obtained through sunlight. Intestinal absorption has nothing to do with it. And Vitamin B-12 is readily available through meat and many other foods.
The fact that all other tests confirm the diagnosis pretty much negates the need for further testing. There really are no "zebras" to continue looking for. Or rather, you have a positive dx of Celiac. Any other diagnosis would be IN ADDITION to Celiac.
And I am unsure as to what you mean when you say you "don't feel sick like other people do". Exactly what prompted all of the testing? Was it screening prompted by someone else in the family being diagnosed? (In which case, a genetic predisposition would already be established). It is very rare that doctors test for Celiac without an initial visit and symptoms to indicate the tests are warranted. The diagnosis of Celiac usually takes a patient seeing 5-6 different doctors and about 9-11 YEARS of testing. You're actually one of the lucky ones.
Celiac is a clinical chameleon. Symptoms are widely varied (200+ possible symptoms). Some people have diarrhea, others are chronically constipated. And I believe that over half do not have the GI issues at all.
Reflux can be a symptom of celiac disease, but it can also be an indicator of other food intolerances or of too much/little stomach acid. The persistance of reflux just indicates that you need to continue investigating this portion of your symptoms outside of the celiac disease diagnosis. It by no means nullifies the diagnosis. You have Celiac Disease.
One of the best resources that can help you in figuring out the reflux portion would probably be the Related Disorders section on this site.
I am sorry that you are in denial. And I do understand the denial you are in. This diet is very difficult to get behind in the beginning. It will take about a year before it becomes second nature. There are many here who would love to have the positive dx you have received to reaffirm their decision to be gluten-free. It can be even harder to be on this diet when the tests don't point to the dx, but the resolution of symptoms on the diet do.
I think that in this instance, you just need to take it a day at a time. Life without gluten is challenging...but it does get easier. And keep in mind that some folks are asymptomatic...until they get diagnosed with stage IV cancer induced by undiagnosed/uncompliant celiac disease. And then, it is often too late to do anything about it. I've yet to meet a pancake that was worth that.
ADHD can often also be helped by avoiding certain chemicals (preservatives, food colorings, food additives). There also is often a problem with dairy. I've known of a few people who tried adding omegas and enzymes to the mix with really good results...including getting off the medications. For more info, you can check out this link and the subsequent supporting links. http://www.enzymestuff.com/conditionadhd.htm
Glad to hear that things are getting better already!
Considering the family history, it is likely that gluten is the culprit behind all that you've been experiencing with your children. Though they may not be thrilled with the prospect of going gluten-free, they may be surprised at how well they do on the diet. I'd definitely give it a shot.
As a side note, I would recommend also supplementing with D-Mannose for the child that is getting frequent bladder infections. It quite often stops the infection in its tracks. Generally it takes about 10 minutes to start working. http://www.associatedcontent.com/article/3461/dmannose_the_natural_cure_for_bladder.html
My daughter is sensitive to a lot of foods and chemicals/medications. The D-Mannose has been wonderful to have when we've dealt with bladder infections. Our doctor was seriously impressed that the bladder infection cleared up so quickly (the first infection we had him dx the infection and then went back in to make sure it was gone). And our daughter was just happy the pain went away almost immediately.
If you're looking for food allergies, then yes, the most reliable thing to do is the scratch testing combined with the CapRAST. The combined result of those two tests usually are fairly accurate.
However, if you are suspecting food intolerances, then the ELISA could be useful. But you do have to keep in mind that if there's a problem with leaky gut, the ELISA may find antibodies to certain foods simply because you're eating a lot of that item and not due to a true intolerance.
Please be aware that these tests are not 100% accurate. There is risk for both false negatives as well as false positives. You may need to follow up with an elimination diet to get a better grasp on what you're dealing with.
LOL! The "mood" must be catchy because my first thought was "And this affects you HOW???".
Some people really are ignorant. And those same ignorant people have no problem stuffing their faces with non-foods (things made with petroleum, coal tar, car wax) while having the nerve to judge others who are eating real food. Items that are manufactured, processed, artifically flavored, colored, sweetened and chemically "created" are now the "normal" diet. Anything else is considered "extreme". A whole food diet? You must be crazy to deprive yourself in such a way!
Ultimately, you have to be comfortable with yourself and with your choices. If you're feeling better and seeing positive results, than the people who care about you should rejoice for you and with you. If they don't, they have a pretty messed up view on what it is to be a caring and considerate human being.
The problem is theirs, not yours. Don't try to justify your life. You have every right to live it as you deem fit.
I think that you have to take medical information like this with a grain of salt. One study is hardly conclusive and Reader's Digest is not supplying any of the details involving the study. You're basically getting their version of what the abstract is and not the methodology.
I find it strange that the study put healthy adults on the gluten-free diet to see how it affected them. In reality, the diet is difficult to the point where no one would commit to it unless they were having serious health issues. (Does anyone else wonder if these people truly adhered to the diet? For us, that first month was one where many mistakes were made.) And I think that most have the sense to realize if the diet is making a positive difference or not. So I find the "fad diet danger" label to be suspect. Maybe I'm wrong, but it has always struck me that these articles stressing the importance of testing (in reality biopsy) and downplaying the benefits of gluten free for gluten sensitive non-Celiacs, is simply a ploy to keep people in the doctor's office and at the mercy of doctors who may or may not understand this disease. I'd much rather see an article covering the medical myths surrounding this disease so that patients could understand the pitfalls in obtaining a diagnosis.
But that's probably just me.
Anyway, our daughter is not officially dx'd with Celiac but her doctors are in agreement that she most likely does have it. Her reactions are extreme. We also have a gluten, dairy, soy and egg-free house. And my husband and I feel better than we did pre-diet days. I also avoid these foods outside of the home.
I think that the previous posters are correct in their statements that a whole food diet can be much more healthful than trying to replace bad carbs with more bad carbs. From an evolutionary perspective, humans really don't need to eat a lot of grains. So I wouldn't worry too much about what Reader's Digest has to say. You are going to be much better at assessing your family's health than they are.
This is the scenario that is absolutely dreadful to deal with. Postive blood work and negative biopsy. What to do?
I don't know how much you're willing to spend on a genetic test, but you can get the home kits from both University of Chicago as well as through Enterolab. The results may be the "tipping" factor in getting your GI to confirm the diagnosis without more biopsies.
It's hard to give advice in a situation like this. For me, the most important thing was to get my daughter well. We had negative bloodwork and no biopsy. We did enlist the assistance of the pedi GI and our family doctor and monitored the changes a gluten-free diet had on a weekly basis. The results were overwhelmingly positive and we got a diagnosis of gluten enteropathy (which can be Celiac or non-Celiac but basically changes nothing in terms of treatment). There is no doubt that my daughter is extremely sensitive to gluten. And now, more and more family members are being diagnosed through bloodwork and biopsy. So I take that as my daughter being the "canary in the coal mine".
That being said, I can tell you that in the beginnings of the diet, I naively thought that we could always put our daughter back on a gluten diet in order to confirm the disease later on in life. After seeing the difference the diet has made, I no longer think that. In truth, I think that I cried for a week when I realized I had been unwittingly poisoning my daughter with those foods. We will NOT be going back on the road to "gold standard" diagnosis unless my daughter decides it's necessary. And I really don't see that ever happening as she has horrific reactions to even a crumb of gluten.
You need to really take an inventory of what your beliefs are as well as who you are when deciding which route to take. This is your child. And you need to KNOW that what you're doing is in her best interest. Your decision should reflect that because either way, the decisions you make now will come back to challenge you through the next few years. Know your strengths and know your weaknesses. It will all come together in the end and you'll be a better mom for it.
I think that the only appropriate response to this GI would be "Over my dead body". What in the world could this doctor be thinking? No wonder insurance rates are soaring! I can understand checking levels with blood tests, but there is no medical justification of doing an annual biopsy. Recovered cancer patients aren't screened with this kind of intensity.
Not to mention that there are still doctors out there who dx celiac via biopsy, perform another biopsy 2-3 years down the road. If the villi are completely healed, they then determine the patient "cured" of Celiac Disease and tell them they can "go back to eating gluten".
I think that the doctor needs to explain himself further and also should be reminded that you are in charge of your child's medical needs. You choose what and when medical procedures are done.
I agree with the other posters who have said this is a personal choice. But I do believe that a strongly positive TTG should be enough to confirm the diagnosis.
I do not agree with the new and growing trend of putting a new patient on a gluten-free diet after positive bloodwork but before a biopsy. That is just begging for a false negative biopsy result and the practice should be discontinued. Please ask your GI to talk to the pediatrician about this as it prolongs the suffering of many children by skewing test results. Patients should be made aware of the options and requirements of the tests so that they can make a choice as to how they want to proceed.
That being said, we did not go to biopsy with my daughter. I don't really regret it. There have been times when I've thought it would help out with the school (in terms of "official" dx), but in all honesty, it hasn't been required. Our doctor writes up any notes we need as he saw our daughter throughout this process. The only "problem" we've run into is with an aunt who cannot bring herself to acknowledge that this is a real disease. And I really don't care that she has issues with what we're doing. It is working for my daughter and that matters most to me. My daughter's reactions to gluten are very extreme and she's very sensitive to miniscule exposures. There are no doubts for us.
I totally can relate to you wanting to just heal your daughter. The stress of seeing your child suffer while running all of these tests is just incredible. And not following through on an answer doesn't feel right when you're looking at prolonging suffering for months for a test that may, or may not confirm.
Good luck with your decision. It is a tough one to grapple with in the beginning of this journey. Just stay true to yourself and it will all work out best.
My daughter is super-sensitive to gluten and also very sensitive to dairy, soy and egg. It became apparent to us very early on that we couldn't have a "mixed" household. And so, we do not allow offending foods in the home. Period. The only exception we have made is with coffee creamer and regular milk for guests.
In which case, wiping things down is just a regular household chore, not one aimed at decontaminating things which could bring on a reaction.
It has taken some time to develop recipes and menus that cater to the diet as well as being guest-friendly. But so far, it hasn't been a problem. In fact, I've had several people ask for recipes and they've also responded with a bit of shock at the fact that the food offered was "normal". We also recently had a large family get-together where everything offered was safe for my daughter. We had tons of food and no one even realized they were eating from an allergen-friendly menu. We got rave reviews.
I don't think you're "overdoing" things by cleaning up after having offending foods in the house. If your child got CC'd after such an event and you hadn't put forth the effort to clean up, you'd kick yourself for not having done better. But it can be tiring putting forth that effort before AND after a party. So it may interest you to find some safer alternatives so that you can relax and have fun a bit too.
If you're going to meet with the principal and teacher about this, you may as well start proceedings for a 504. That way, you can agree to certain standards and the documentation will be there if a teacher decides to deviate.
I do agree with others that thermoses and cooler packs work well for lunches. I send a hot lunch in for my daughter 3+ times a week (the rest are cold). I just boil some water in a teapot while preparing her lunch, pour the hot water into a metal thermos (the plastic ones suck). Then heat the food in the microwave, dump the water out and dry, then add the hot meal.
However, with that being said, I still think that this issue needs to be brought forth in the schools. Hot meals are provided free or at a reduced cost for those with financial difficulties. In all honesty, I don't see why a child with a medically diagnosed food issue should not have a hot lunch available to them as well. It is a form of discrimination because your child is not allowed equal access to services provided at the school.
That being said, it seems simpler to allow access to a microwave than to fund the cost of providing an allergen-friendly meal.
The only thing that will get them to take this more seriously is the constant reminder that their current attitudes and actions are noticed and deemed not trustworthy. Unfortunately some people just don't "get it" simply because they do not want to. And these same people will not take it seriously unless they repeatedly see just how seriously you take it. So it may mean staying away for a while or seriously limiting contact. If they care enough, they'll soon realize that they are jeopardizing relationships with their nonchalance and temper their initial impulse to roll those eyes. When that happens, be sure to praise them for their compassion to reinforce the "concession" they have supposedly made.
It takes a while. But it is imperative that you set very clear boundaries. They may not like it at first, but that's the only way you'll be able to eventually have a "normal" visit and not resent them in the long run.
Just so you know, you will need to be tested every 3 years or so unless you've had the genetic tests done which show you don't have the genes pre-disposing Celiac. The simple fact is, this disease can be triggered at any point in life. And the tests aren't 100% definitive. They can rule Celiac in, but they can't rule it out. This goes double for tests done on young children. Many of them come back with false negative results. My daughter was one of those. We took her off gluten anyway and she has thrived since.
If it's possible, try to pack gluten-free snacks and meals for the times your daughter is at your mom's. Young children are built to explore their world by putting everything in their mouth. And this is especially difficult in regards to cross-contaminating a Celiac. My own daughter has gotten sick at both my sister's and my sister-in-laws home because of sharing toys with their kids. It's a very difficult thing to control unless everyone makes it a habit to wash their hands after each meal and snack.
I agree with all of the posts so far on cross-contamination issues. It may seem over the top, but the fact is, all these minor things can delay a Celiac from improving. Also, I don't know if your mom has a computer at her desk, but if she shares any office equipment, that also may be a source of cross-contamination. She may want to keep some wet wipes at her desk to save some trips on hand washing. I've been cross-contaminated twice by sharing a touch screen register at work. People are always eating and playing on the computer!
Cosmetics and hairspray are two other culprits which should be looked into. Dish soap and laundry detergent, spray starch (if your mom irons her work clothes) as well.
It takes a while, but eventually you cover all the bases and things normalize. Hopefully she'll recovery fully soon.
Here's a link which outlines the bills in question: http://food-allergies.suite101.com/article.cfm/food_allergy_and_anaphylaxis_management_act
From what I am reading, the bills still are not out of Committee so they haven't been discussed on the floor. Probably would be a good idea for everyone here to contact their local Congressman to push this along.
I live in a small town as well. We do grow some tomatoes and peppers. However, there are a couple of garden centers in the area that let you pick fruit as is available throughout the year. We can pick our own strawberries, blueberries, raspberries, blackberries, apples, peaches and cherries. It takes little time (about 15 minutes per trip) and we have plenty of fruit to eat and or freeze. Some places also have veggies available to buy at a better price than the supermarket. Some towns even have community gardens where all you need to do is show up to pick the produce when it is ready for harvest. My sister does this and the cost is at about 1/3 of what she'd pay at the store.