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
Thanks so much for all of the helpful information. Seth, I REALLY appreciate all of the information you have provided. It is so wonderful to hear that there are other Celiacs who are trying to join the Peace Corps. I printed your post and will keep it for future reference. I will cross my fingers that everything works out well for you and your wife...please keep us posted!
I understand where you're coming from regarding the nutritionist...the first dietician I saw was affiliated with my GI doctor and just printed a few sheets of paper from the Internet...as if I couldn't have done that myself and saved a heck of a lot of money !
However, through the support group in my area I met a dietician who has Celiac disease himself. As I said in my response to your support group post, I'm not sure where Greenville, PA is or how close it is to Pittsburgh. If you can make it into Pittsburgh, though, I would really recommend making an appointment with him if the nutritionist you see isn't helpful. He spent 2 hours going over the gluten-free diet with me and then gave me a huge packet of information listing meal/snack ideas and providing the names of mainstream products that are gluten-free. Since he is both a dietician and a Celiac, I personally place full trust in the accuracy of the information he provides. If you're interested, just e-mail me and I'll give you his name and contact info. In any case, good luck in your quest to learn more about the gluten-free diet!
Oh my gosh...I'm sorry you have had to go through so much trying to get a diagnosis. You're absolutely right about constipation being a celiac disease symptom...reflux and constipation were my primary symptoms before diagnosis, never diarrhea. Out of fairness to doctors, I do have to say that it must be nearly impossible to keep up with the latest information about every single possible disease/affliction. However, I also think it's inexcusable for a doctor to ignore a patient who is trying to give him information on a disease that he obviously doesn't know much about. I hope he reads that NIH consensus statement thoroughly and starts taking your Celiac suspicions more seriously!
I had to laugh when I read your post b/c you're absolutely right...natural/artificial flavoring is such a vague term for an ingredient that its presence on the label tells you absolutely nothing. You're right when you say that it's pretty obvious that there is either going to be a natural or an artificial ingredient that flavors the product...it would be so nice to know the exact identity of the ingredient(s)! Another ingredient I love is modified food starch. Why even bother putting the "food" in there...if the company wants to be that vague, it might as well just list "modified starch." I think most people would infer that it comes from food. Oh well...at least the future looks brighter. Once the food labeling bill goes into effect in January 2006, all companies will be required to reveal any sources of wheat (or any of the 7 other major food allergens) that are present in its products...no more hiding wheat behind fuzzy wording. Of course, barley and rye will still be an issue then, but at least it's a step in the right direction. To answer your question, until the day when all sources of gluten have to be identified clearly on a label, we definitely do need to further investigate any product that has natural/artificial flavors listed as an ingredient.
I am a college student and I was thinking of joining the Peace Corps when I graduate (this will not be for several more years, but because of the Celiac disease I want to have everything well planned out in advance). A lot of the areas the Peace Corps works in (southeast Asia, Latin America, etc.) do not have wheat-based diets, so it doesn't seem like this is an unrealistic goal. However, I was wondering if there is anyone out there who has actually been in the Peace Corps and can tell me if it was possible to maintain a strict gluten-free diet while abroad. If so, where did you go and what steps did you take to ensure that that the gluten-free diet wouldn't cause problems? Any input would be greatly appreciated .
I have never personally used a gluten test kit, but another Celiac I know has and we have discussed them. The kits are manufactured by ELISA technologies and cost $80. Each kit contains materials for 5 individual tests. You can find out a lot more at the ELISA website (http://www.elisa-tek.com/).
My opinion on the test kits (and others may disagree) is that they are best for telling you which foods DO contain gluten--that is, if you get any degree of positive result, you know not to consume that food. However, negative results do not necessarily indicate that a food is safe because there is always the chance that you will be testing a candy bar/scoop of ice cream/etc. from a batch made during the shift of more careful workers...it could still be the case that there is contamination in other batches of the same product even though the one sample you tested came back negative. Of course, you can always test the same product repeatedly over the course of time and become more certain of the result, but that gets pretty pricey. This is just my opinion, though...if you think the peace of mind is worth the high cost, then go for it!
There are tons of good, gluten-free sources of carbs. There are breads made from gluten-free grains (Food for Life, EnerG Foods, and Kinnikinnick are popular manufacturers.). There are also gluten-free energy bars (Aunt Candice Foods makes some--see www.auntcandicefoods.com), gluten-free cookies, gluten-free pastas, etc. And then there are fruits and veggies that are naturally rich in carbs, such as bananas, corn, sweet potatoes, etc. I hope this helps!
I'm another 21 year-old female and was just diagnosed about 1 year ago, so it is definitely possible to be healthy your entire childhood and only begin experiencing symptoms as an adult. To answer your other questions:
-The amount of time it takes for fatigue to disappear on the gluten-free diet varies a lot from person to person. Some people say they feel like a whole new person in just a couple of days, while other people do not begin feeling better for a few weeks or maybe even a few months. For me it took about three weeks for my GI symptoms (reflux, bloating, constipation) to subside and around 2-3 months for the fatigue to go away. One way to make the fatigue go away sooner is to make sure you are eating a balanced diet. You may even want to look into taking a multivitamin because most gluten-free foods are not fortified, and you want to make sure you don't end up with any vitamin/mineral deficiencies that could lead to sleepiness.
-I was totally not myself prior to diagnosis. I was tired all the time (very unusual for me), irritable, and depressed. As I said before, it was a few months before the tiredness went away. However, the irritability and depression went away as soon as I was diagnosed b/c I was so happy that I finally knew what was causing all of my symptoms (and that my symptoms were NOT just all in my head).
-I had my symptoms about 1 year before I was diagnosed with Celiac disease. The symptoms started while I was doing a study abroad program in Germany, which was a ton of fun and very worthwhile, but also quite stressful b/c I was living in a small town that didn't otherwise see a lot of foreigners, so I always felt like people were making judgements about America based on how I acted. When I came back, I experienced some brief symptom relief, but then my symptoms began to come back and were at their worst during finals week of my Fall and Spring terms. So it definitely seems like stress can be a factor!
Okay, I think I answered all of your questions. Please feel free to e-mail me if you have any more. I'm so glad to hear that the gluten-free diet is helping !
First, I just wanted to say that I'm sorry for all of the suffering you've been through these past 4 years. No one deserves to spend that much time in misery. Based on your symptoms, it would definitely be logical to suspect Celiac disease. I'm not sure if you have read this yet or not, but it is believed that in genetically susceptible individuals, the onset of Celiac disease can be triggered by pregnancy (I'm not sure exactly why...it may be the stresses that pregnancy places on the body, or hormone fluctuations...in any case, pregnancy is recognized as a common time for celiac disease onset). So your story really is consistant with what is referred to as "classic" Celiac disease.
As far as the tests go, I don't have a medical degree or anything, but I did attend a recent consensus conference at the National Institute of Health aimed at developing a uniform public health policy regarding screening, testing, diagosis, and treatment of Celiac disease. One of the topics covered was the various serological tests used for diagonsis. There were actually 5 blood tests that were mentioned, including:
AGA-IgG (antigliadin antibodies, IgG class)
AGA-IgA (antigliadin antibodies, IgA class)
EMA-IgA (endomysium antibody, IgA class)
TTG-IgA (tissue transglutaminase antibody, IgA class)
ARA (antireticulin antibody, IgA class)
The researcher who presented on the blood tests concluded that the two tests of the five mentioned above with the best sensitivity and specificity are the EMA-IgA and TTG-IgA. So if you are going to tell your doctor which test to perform, the current research indicates that you should pick one of these two. Regardless of which you pick, you should also tell him to check your total IgA levels because 1 in 300-400 people are IgA deficient. In IgA deficient individuals, both of these tests can produce a false negative (since they measure levels of Ig-A class antibodies).
If the bloodwork does come back positive, it is necessary for you to have an endoscopy performed by a GI doctor so that biopsies of your small intestine can be taken to check for abnormalities consistant with celiac disease. The description of the procedure frightened me when I read it, but doctors typically give an anesthetic that induces a "twilight sleep," so I didn't experience anything more than a slight sore throat.
Anyway, I'm on my way out so I've got to wrap up this post now, but I hope this information helped. Feel free to e-mail me if you have any more questions. I wish you the best of luck in your search for the source of your symptoms.
I noticed this, too! I only had my period twice during the year that I had notable GI symptoms, but both times I was in total agony...to be quite honest the pain made me a big fan of amenorrhea! Since diagnosis I have had several periods that have been much less painful, so based on my experiences I can't help but think that there is a connection between sex hormone levels and the severity of the immune response.
There are definitely some great non-dairy beverages on the market. My favorite ones are made by Pacific Foods and are actually marked gluten free on the front of the box. I have tried the Original almond, vanilla almond, hazelnut, and vanilla rice milks. The hazelnut milk is my absolute favorite. It's flavorful and sweet, but not sickeningly sweet. The vanilla almond milk is also very good...just not quite as good as the hazelnut (in my opinion). The vanilla rice milk is a bit too sweet, in my opinion, and the original almond milk is not sweet enough (although it tastes fine if you add it to a sweetened cereal or mix it with fruit to make a smoothie). I know that Pacific foods also makes soy milks, but I have never tried them because soy tends to cause problems for me. I have found Pacific foods beverages at WholeFoods and Giant Eagle (I don't know if you have stores from these chains near you) and also at health food stores. Oh...and the Pacific products are all fortified w/vitamins A and D and calcium, so nutritionally they are fairly similar to cow's milk. I hope this helps!
Thanks so much for posting this! I go to the University of Pittsburgh, which uses Sudexho, and my personal experience has been that they follow through with what they said in your letter--they are very willing to try to accomodate the dietary needs of Celiacs.
Wow! I have been experiencing sleep paralysis off and on for around 9 years. I don't typically feel the presence of someone else--I just know that I'm awake and I can't move! The sleep paralysis has gotten better since I've gone gluten-free, but it definitely still happens from time to time. Although it seems terrifying when it occurs, the general consensus seems to be that it is benign. It's nice to know that I'm not the only one out there that experiences this--although I wouldn't wish the terror on anyone!
I contacted Horizon regarding the gluten-free status of their flavored milks and yogurts and received the following response---great news!
Thank you for your recent inquiry into Horizon Organic products.
> were asking if any of our products
> contains gluten. The flavorings are extracted with corn alcohol and
> best of our knowledge, all of our
> products are gluten free.
> Our top priority at Horizon Organic Dairy is to ensure that we always
> provide you with the highest-quality
> organic products possible.We believe that organic agricultural
> result in foods that are not only tasty,
> safe, healthy and wholesome but that are produced without
> pollution or resource degradation.
> Your interest is of utmost importance to us, and we take your
> seriously. Please visit the many
> pages of our website at www.horizonorganic.com for great information
> our products and company. Thank
> you again for taking the time to contact us.
> Consumer Services