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
I, too, found out via Enterolab that I have a casein intolerance. I did their test 10 months after going gluten-free but still suffering from joint pain, bloating and gas, and brain fog. Cutting out dairy cleared my head right up and the stomach and joint issues soon followed. Lactose intolerance supplements did zilch. (Side note: My doc suggested Beano - the pills contain wheat!)
I am a total cheese freak and have found some delicious sheep's (or ewe's) milk cheeses that may interest you. I found goat milk cheeses just too, well, 'goaty', but the sheep's milk cheeses tend to be milder. Marzolino is a great soft, mild flavored cheese, like mozarella, and melts perfectly for pizza and nachos. I buy it from iGourmet.com and justify the shipping costs by ordering several at a time. It works well this way since it is sold in its original packaging and not cut and repackaged - which is a problem with a lot of the other cheeses. It still is expensive, but totally worth it for my cheese fix. I have also found a couple of sheep's milk cheeses at Costco that are yummy and much better priced than online or at a fancy-pants store.
I thought I might be able to start to reintroduce bovine dairy after 18 months gluten-free and 8 months DF, the Enterolab test said that I was borderline on cheese casein but bad on milk casein, so I figured the fermentation process breaks down the casein molecule and I could start on fermented milk products. I had immediate problems with kefir yogurt, so that wasn't fermented enough, but can eat a nice stinky blue cheese. Can't handle provolone, so I think it is just a matter of degree of fermentation. Right now I am sticking to the sheep's milk cheeses and a stinky blue now and then (btw, there are delicious sheep blues, but they sell out fast and are really expensive). The problems I have experienced are significant enough to make me shy of too many adventures.
One very good thing, though. Since going Gluten-free Casein-free, I can drink wine again. I cut myself off many years ago because of the horrible sinus repercussions, but now find that they are insignificant. Wooha! And don't forget to take calcium supplements that include plenty of vitamin D!!
You're right about the over eating, I must admit that. It seemed that once I knew I couldn't have any cookies and crackers and cake I was devastated, even though I never ate them to begin with. When I figured out the Gluten-free snacks, then I began to eat them, so I ate a lot of simple carbs that I would not have eaten before Gluten-free. I bake my own cookies now, using the Pure Oats oatmeal and that helps a lot with the fiber issue. I tried adding FiberSure to all of my foods, but it made me feel like I was going to have diarrhea at any given moment - all day long, so I've cut that out.
Just did my latin dance workout. Really fun, but every joint in my body is yelling at me. Started with the 5 lb weights for a little shoulder work as well. Fingers crossed I keep it up and don't wimp out.....
My Mom has tried to gluten me every time I visit. She just says "Eat around it!" It is very frustrating but I held my tongue the last time and ate only the baked sweet potato. She was insulted, but oh well, that was a lot better than what I wanted to say to her. I called my husband afterwards, all steamed, and he said to just calm down, that my mom lived through the Depression and ate chicken feet for dinner, so give her a break. I can understand her confusion since she did raise me and fed me every day until I left home, but I think she is slowly coming around.
I really wish my face would blow up and turn blue with orange spots when I ate gluten. It would help with unbelievers so much........
Yep, I've put on 17 lbs since I went Gluten-free Jan '06. My gastro guy says it is normal since I am now properly absorbing my food, but it is very frustrating since I've battled my weight all of my life and was not in any obvious nutritional distress when I was untreated. I have hovered between 10-30 lbs overweight forever. Fortunately, or unfortunately, I was down a few pounds when I went to Gluten-free, so I still have some 'fat' clothes to begrudgingly don. Don't go to gluten to try to remedy the situation. Believe me, I am most likely just as unhappy as you are about it, my wardrobe is truly malfunctioning and I am obsessing over my belly, posterior, and jowls daily - hourly. I just decided this past week that I cannot sit by and put on another pound. I have always had success with Jenny Craig and NutriSystem, but they are not made for us, so it is just a matter of cutting back on what I eat, I started a latin dance workout yesterday (boy, am I creaky), and I am starting to lift light weights today. I am 50 and just want to be healthy and strong versus stick thin like I used to wish I was for so many years. But, I must admit, I would love to get back into my size 8s. If you can handle dairy (I am allergic to casein), you may be able to take advantage of the good whey protein shakes out there. Good luck.
Sorry, no skin condition like that here. Hope you find some help with it.
Actually, I felt a lot better after going gluten-free for the first month, but just the stomach stuff. Then I got really sick for about a month, all of my previous symptoms were back with a vengeance. I figured out that it was SIBO (Small Intestinal Bacterial Overgrowth). I think it happened because I had lost a lot of my fiber in the Gluten-free process. You can get it treated with antibitotics, but I found a diet online (sorry, can't remember where I found it, google SIBO) that worked well. Basically, it is the Atkins diet except you eat fresh fruit as well. It is meant to eliminate any refined carbs and sugars to deprive the wrong bacteria from growing in your gut and the high fat portion makes everything slip through your gut at a higher rate. I did it for 2 weeks and felt really good afterwards. It then took me about 2 months before I noticed the fatigue and arthritis symptoms to have really subsided. Just hang in there and research everything that happens to you. I wouldn't have known about the SIBO except I searched the internet with the question as to why I was still sick if I had gone gluten-free. I forget the exact search phrase I used, but it was pretty close to just WHY AM I STILL SICK?!? My gastro guy and my Family MD had no idea. You have to pursue this and not give up.
Hope this helps and that you feel better soon,
Oh yeah, DEFINITELY take probiotics. They will help immensely. I can point you in the right direction on those if you need help.
I am also on Aciphex twice a day, although lately, I forget the second dose unless my stomach is acting 'iffy'. I also found that taking probitics every day helps immensely, and is most likely why I am forgetting my second dose of Aciphex. Plus George's Aloe Juice, it settles a sour stomach. It tastes like water, not bitter dirt like the other Aloe juices.
A great drink is ice cold water with g inger drops sweetened with Stevia. The ginger has the bite of alcohol, so it satisfies what I like so much about vodka, that initial burn as you sip, really peppery, but it also does wonders for your belly. The best ginger is "New Chapter Daily Ginger" extract. I use "Sweet Leaf Stevia Clear" liquid stevia.
I have had all sorts of wierd symptoms as well, including a hot face, and just realized yesterday that a few more have gone to the wayside. I have been gluten free since January 2006, but have still been getting some hidden gluten as evidenced by a positve IgA a month ago, but it is a lot better than it was. One of my symptoms was the inability to have a proper conversation on any given day - I just could not remember the name of anything! It was so frustrating. I'd wind up pointing to the object that I could not name - say the kitchen countertop - and getting so mad at the person I was talking to because they could not get what I was trying to say. Sheesh!!! Anyway, I realized yesterday that I have been having perfectly clear conversations for a while. YeeHaa!! This healing may also have been helped by all of the logic puzzles I have been forcing myself to do daily. They really are hateful things and very difficult for me to do, I guess it is because I am an artist and don't think particularly logically, but I have improved on my success rate from 1 out of 5 right to 3 out of 5 right. (I am bored with the Sudoku and regular crosswords)
The second healing I have noticed is that I do not want to take my Ritalin anymore. I was diagnosed about 6 years ago with Adult ADD. The Ritalin really helped when I needed to pay particular attention. I had a lot of business meetings to attend and would find mindself drifting off and unable to follow the conversation. I was getting lost a lot when I was driving. I also tried to burn down the house a couple of times by boiling the pan dry. I hadn't taken it very much over the past 6 months because I have been hoping the gluten was the culprit and was holding out for my brain to settle down after going gluten free, but the thought of never getting a refill again was really scary. I realized just over the past few days that I don't care about it anymore, at all. I haven't had any since I don't know when and feel perfectly capable of handling life without it. Both of these improvements are huge events as far as I am concerned.
I still get a hot face now and then, but it is rarer and rarer. It does take a while for things to settle down after going gluten free. Hang in there and look forward to happy days when you, too, realize that something good has happened.
Very interesting. I went to the link on the fecal testing and there is a 'reply' tab on that page to read Dr. Fine's reply. My husband and I were just tested by Enterolab and believe the test is valid. Thanks for the investigative work, it is very helpful to hear as much as possible in this ever evolving issue.
That's how I react to gluten, I barf all night long. It always starts with belching, sometimes days before, then it progesses to food regurgitation, painful belly gas, and then I blow chow to wee in the early morning. Sure hope you have a good gastro. Good luck on Wednesday. -
I just sent my Enterolab 'stuff' yesterday. So I am hopeful that I see something within 3 weeks. My GI pooh poohed me on Celiac as well and the biopsy was normal, but I had gene testing via Kimball Labs last February and I have the Celiac gene. I also feel tons better after going gluten-free. I am going to Enterolab to corroborate allergy testing I did via OHS (17 1/2 weeks of waiting and a complete pain to deal with) and to also get my husband tested. I did not get tested by Kimball for all of the gluten sensitivity genes, so I want to check those just in case I need to tell my family more *good* news. I also want to know if I am still eating hidden gluten. I had a major barf session the other night so I am worried about that.
Oh, and there is plenty of stuff to eat that is gluten-free. You just have to educate yourself and look for it. It was a bit difficult at first, but now I have plenty to eat. The real tricky part is on travel, the coffee hutches certainly don't carry gluten-free stuff, so I always have plenty of snack backup. I can eat peanuts, so at the airports I buy a bag of the carmelized peanuts at the newstand-store for my travel treat. The bag lasts me both to and from my destination. I wind up eating a plain hamburger patty and if I am lucky, french fries, when we stop at a diner while away. Almost everything else is suspicious.
But, when all is said and done, it doesn't matter what I cannot eat when I compare how I feel today to how I felt a year ago. It is worth it.
OHR refunded my money. I turned around and ordered a complete panel from Enterolab. I was only going to retest for the dairy and egg responses, but I spent last night heaving my guts out, so I am ordering the gluten tests as well to see if I have been glutened. I am so careful with what I eat, but today I am looking into other things that I did yesterday as well, like I used a lot of lip gloss because I had appointments and also used a teeth bleaching solution. Perhaps I am poisoning myself there and don't know it. Anybody have issues with lipstick/gloss with Vitamin E added? I think they may derive it from wheat germ oil. Man, I am beat this morning.
Thanks for the link, I looked into US Biotek and from what I can tell from their website they only do tests via physicians. I went ahead and ordered tests through Enterolab. I read all of your family's intolerances, boy, you sure can't go out for a meal. I am getting my husband tested with me this time, so it should be interesting to find out what we are limited to as a pair. As I read this bulletin board, I find it amazing that food intolerance testing isn't a required test for everybody - part of their first school physical.
This question is probably answered somewhere else, but after reading through a few threads, I'll just ask again. My IGG allergy test came back to say I am allergic to milk, yogurt, cottage cheese, whey and mozarella, but not to cheddar cheese. Since cheddar seems to me to be the same ingredients but with added rennet and then aged, does it mean that the lactose is used up in the process and that casein is OK for me? The reason I am asking you all and not the testing lab (Optimum Health Resource - very bad choice, see my thread under Pre-testing for that saga) is because I am not getting the information I need from them to complete the picture. I am also retesting with another lab this week just to make sure of these results.
So, what do you think?
I also tested allergic to eggs - now that has thrown me for a loop and I am mulling that over today. I made pumpkin pie without the crust yesterday using ground flaxseed and water as the egg replacement, it's OK, I guess. Certainly not as smooth.
I filed my complaint with the BBB on Wednesday last week, received an acknowledgment from them on Thursday that they had started to work on the case against OHR Labs and by Friday evening I had received an urgent email from OHR with my results attached. The document shows they received my test kit on June 28 and processed it Sep 5. They advertised it would take up to 6 weeks to process, they processed it in 10 weeks and then sat on the results for 5 1/2 weeks longer until the BBB knocked on their door, ignoring any correspondence on my part. I don't think they recorded the test kit as received on the proper day either, since my records show they received it on June 12.
All in all, what a disappointing experience and I do not think it would have been resolved if I hadn't have pushed the issue all the way to the BBB. From the thread in this message group, I can see that it is basically business as usual. I wanted to send in a test for my husband as well, but thankfully I decided to wait to see if the results seemed worth the money before I submitted another. Very glad I held off. Is Enterolab my next best choice, do you think?
I am retesting with another lab to corroborate their results as well, I just don't feel like I can trust them. I am going to another topic - Other intolerances - from the main board to ask about my new found allergies, specifically eggs and dairy - milks and yogurt but not cheddar cheese, what's that all about and what is broken on that food chain to allow me cheddar? Let me repeat something that I read over and over in all of these message boards - THAT'S CONFUSING!!
My Mom made dinner for me last week and hid the empty can for the gravy and the Swanson's chicken broth at the bottom of the garbage so that I wouldn't know.... I, of course, did some garbage diving and wound up eating a yam. You are very lucky to have a family that is trying hard to help you. Just take a breath and know that they will ease off once they figure out that going gluten-free isn't as hard as first thought. It is easier to start from this point of extreme than the other Have fun at the wedding. Champagne is gluten-free!!!