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
It means that you think you're gluten-free, but you're not. You're gluten-light. Look for sources of contamination you might be missing. I tend to get hit with barley because labelling laws ignore it. Check BBQ sauces, cereals, and chocolates for malt.
Along that line, my fiance picked up two containers of dry roasted peanuts from the same manufacturer, and noticed that the larger container (even through it was the same brand, flavor, etc) had wheat starch in it, while the smaller did not. Read every label, every time. Lipton started putting barley in their French Onion soup mix, and I figured it out the hard way. :/
Also, do you eat out? It doesn't matter how careful you are and how particularly people handle your food, restaurants will get you sometimes. If someone handles a sandwich and then handles your food without changing their gloves, that can be enough. The amount needed to have a reaction is smaller than is visible to the naked eye.
I'm not a stomach celiac. My big issues were psychiatric, cognitive, and neurological. I will say a couple of things.
1. A positive on *anything* on the test is a positive test. It doesn't matter if it's by a narrow margin or it's only one of the markers. Positive is positive. Current medical guidelines support treating even so-called 'silent' Celiacs (people without any symptoms).
2. It does get worse for a few months before it gets better. I was having anxiety attacks in public, and all sorts of crazy things. Your body is adjusting to a big change. The fact that it is getting worse is actually a sign that the diet's having an effect.
3. The brilliant thing about being a celiac is that you don't really need all those crazy specialists. If they can't figure out what's going wrong, you can just stick to your diet and you'll know one way or the other after a few-six months...no crazy tests needed, and no drugs needed. At the end of the day, having a piece of paper isn't important -- feeling better is.
Redbridge is a great gluten-free beer. I once heard a professional beer critic say that it was the only 'good' beer Anheuser-Busch has ever made. lol
Take this as an opportunity to get everyone eating better things. My gent eats the same things as me, and he has gotten much healthier since I went gluten-free. Carbs and pizza and beer are tasty, but they are fattening and not very nutritious. The added time, effort and price of gluten-free versions should add to the motivation to have them less. If there is anything this adventure has taught me, it's that "You are what you eat" really means something.
Don't feel bad if you have to designate things as 'yours'. Food is a great place to start when teaching children respect for others' belongings.
Imagine for a minute that you have the flu. There are millions of little viruses in your body, all smaller than anything you can imagine. Your immune system systematically finds and wipes them out. It can locate a single virus or organism in your body and irradicate it. Now, think about this by logical extension: you are turning the most powerful part of your body on your own tissues, intentionally. Even if you don't feel it happening, you are causing terrible amounts of damage and not allowing them to heal.
My uncle has MS. He has been in a wheel-chair for the past 30 years, from a single MS event. He got tired while at work, sat down, and never stood up again. His immune system did that to him, without pain or warning. Auto-immune diseases are not something to screw with. We have people on here with the celiac cancer, people with failing kidneys, people who lost all their hair.
One of my coworkers was a Celiac who cheated from time to time. He was 45 and looked 65. I say was, because he died last year. This stuff can kill you.
I'd cut out all of the dairy products. That's what really gives me reflux. If you can't go cold turkey, you could switch to all almond-based products. Also: green vegetables are your friend. Try eating a cup of green vegetables at lunch and dinner for awhile.
I go with Tums for acute reflux, but you may want to ask your regular doctor for a daily pill as well, if it's that terrible for you. You don't take NSAIDs (aspirin, ibuprofin) on a regular basis, do you?
Coffee is very acidic and high in caffeine, which can be hard on your stomach -- especially an empty stomach. Both me and the non-celiac gent get a little stomach upset with coffee. (I am not a stomach celiac.)
This is actually a more complicated issue than you might think at first glance. I've had problems with drinking lots of fluids and urinating every 20 minutes for several years now. I've had all the crazy work-ups. I've been scoped and poked and prodded. There are a dozen possible causes of the issues you've been having, and I started to compile a list with explanations, but realized that it would be several pages long. Here is the short version:
1. You could have chronic UTIs that your body is failing to clear. I've experienced this one personally.
2. You could have actual diabetes.
3. You could have reactive hypoglycemia.
4. You could have a structural abnormality in your kidneys, or cancer.
5. You could have an auto-immune related irritation in your urinary tract. (If I eat gluten, I have to pee every five minutes, get terribly thirsty, and sometimes start passing blood and tissue in my urine for the next few days.)
6. You could have DI.
7. If you're a caffeine drinker, could be hypersensitive to caffeine.
Some other things to think about: It's the winter. If you live in a climate where it is below freezing outside, you need to have a cool-air humidifier running in your home, either in-line with the furnace or as a unit in your living room/bed room. If you don't, your body will force you to drink a metric ton of water to compensate. To give you an idea, this winter before we brought out the humidifier, I would go to bed and wake up 3-4 lbs lighter, just from water lost to breathing.
Also, you're an athlete. You are pushing your body to it's limits, and it's not unusual to hear from runners, etc. that they drink 3x the water that the average Joe does.
My guess is that it is a combination of things. You need to see a doctor to really know.
I've heard of people who have quit their jobs waitressing because being that close to the food was making them ill, and they weren't even physically touching it. I can't imagine that handling a wheat-based product for hours every day is a good idea. I even switched to gluten-free hand lotion. The quantities that can make us sick are so small they are not visible by the human eye. Think on that awhile.
They know that a certain percentage of people will take it anyway, if they don't know any better, since it takes so long to get ahold of pharm. companies for info. I was on hold several times for multiple hours over a medication and finally said "Well, I'll just go with their more expensive competitor. Screw them."
I would imagine that they also don't want it in writing anywhere, incase the origin of their ingredients changes - plausible deniability if they tell someone it's gluten-free and then the ingredients change in 6 mos. and get people sick.
Worrying about schizophrenia (which is extremely unlikely) is just going to make things worse. Relax, and realize that this stuff takes a lot of time. You can check for hidden sources of gluten, like in your raw chicken (sad but true..some companies inject their raw chicken with mystery broth for 'added juicyness' or whatever they want to claim to sell it at a higher weight).
There are also a lot of other factors. For instance, do you consume anything that contains caffeine? I used to think caffeine had no effect on me until I stopped drinking it, then started again. Also, hormonal changes (even in men) from the improvement in diet, and weather have an effect. I get a little loopy every january to march from being cooped up without exercise and light. Your body is adjusting to something hugely different. It took me 6 months to feel better. You'll get there.
As a tip: try to stick to 25% whole grains, 25% protein, 50% vegetables(with the occasional piece of fruit in there) by mass for awhile, and see how you feel. Skip corn and go for things like brown rice, and quinoa. Make sure some of your vegetables are dark green, every day. Nutrition is all about ratios.
The one thing I've learned about the flu is that it is not predictable in any way. It doesn't seem to correlate with anything I can think of. I know 'healthy' people that get the flu and feel like junk for a month, and I've taken care of / lived with them and not gotten the flu, even pre-diagnosis. I've also had flus that knocked me out for a month when everyone else has long since recovered. I think it's a really complicated issue, with a lot of factors.
I seem to get sicker if I get the flu while on my period or under stress from work. The quality of my diet and the amount of sleep I get matters as well. Also, the first year after diagnosis, any little thing would knock me down because my body was focused on healing. If I *were* to try to generalize, I would say I have a better immune system, on average, than a non-celiac, both before and after the diet. The only time that was not the case was the year before and the year after diagnosis. (Obviously, the year before I was really hurting from the celiac, and the year after I was healing like mad.)