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
She needs to find some other thing to obsess over. Saving people in communist countries is hardly the ONLY charitable thing available. Surely there are people in her home country that could use humanitarian aid and Christian saving.
It sounds like she has got hold of this idea in her head and won't consider alternatives. It might work out for her but if she is a positively diagnosed Celiac and knowingly goes into a country where she will have little control over the quality of her food (in or out of prison) then her ambition to do this thing is bordering on pathological because she is discarding her own health in favor of the idea.
Wow you are right, I see it now!!! DARN... I've been taking them. No wonder my stomach is still all screwed up. (Plus I haven't been able to scrub out my cabinets yet, or go through all my lotions and toothpastes and whatnot. I have a whole large box of supplements I'm going to have to probably throw out.)
I have a bottle of Dr. Mercola Complete Probiotics and it says it is gluten free, also free from dairy, corn, soy, yeast and eggs.
Dr. Mercola's Whole Food Multivitamin Plus is a wonderful, complete vitamin, but does NOT say gluten free on my bottle. However, I thought I read somewhere on his website that it is gluten free, it just doesn't have the official label yet, but I am not sure.
I am having a lot of frustration with supplements too. At first, I read a book that said the preservative magnesium stearate is bad for you, and it seems to be in every supplement. That's why I went to the Mercola brand, he doesn't use magnesium stearate.
Also his Digestive Enzymes list only gelatin, cellulose and silica as ingredients besides the enzymes, but the bottle doesn't say gluten free so I don't know. I am taking all these though and they seem to be helping.
I have a bottle of Nature's Way multivitamin, and it says that it contains no "wheat grain" but does not say no gluten. Also, it does contain wheat grass but I have read that the grass is not the part with gluten. So is there cross contamination there? I don't know.
I just bought a Rainbow Light brand calcium supplement. It says it contains no gluten, but it does have magnesium stearate.
I am so completely lost with the supplements, and so frustrated. I can't keep much of anything on my stomach and I just got my bone scan results, not good. I gotta do something.
Oh.... here is something to investigate.... http://lifelinefoods.com/pdaily.htm
Again, I can't find on that page where it says gluten free, but one of their other ones does. That liquid, if gluten free, might be the best choice, it may be easier to absorb and not have the preservatives.
I don't know if OP is still reading this thread. There are a lot of good responses.
You are correct, if you go gluten free with him, and you marry, things will be a lot easier. But he has an emotional issue with this and I think it has something to do with boundaries. If you go gluten free "for him", this is not a position he can trust. He wants you to be you. If you make this major life change he needs to know it is real and will be permanent. The only way that will happen is if you want to be gluten free for your own selfish reasons. (EDIT: this sounded bad when I reread it, I don't mean bad selfish, I mean good selfish, as in reasons that are genuinely for your own benefit, not his.)
As far as I am concerned, your potential future children are selfish reasons enough. I am not of the belief that it's okay to eat gluten "until" you get Celiac Disease. From my own life, I suspect gluten has been making me sick since I was a small child, but very insidiously. Not necessarily ways that will be caught in your child. It made my own children sick in ways that were never caught as Celiac or gluten related but in retrospect, clearly were.
Man was not really meant to eat grains, and you could do worse than having a low-grain, gluten free lifestyle to give your children the best nutritional start. Do some researching on these matters and come to this conclusion on your own, completely aside from him. Disconnect your gluten free diet from him. Make it so even if you broke up, you will remain gluten free for the sake of your future children whomever you have them with. And of course if you stay with him, your kids automatically have a good chance of getting his celiac gene. YES, it certainly does benefit someone with that genetic tendency to be gluten free from birth!
If you eating gluten free along with him makes him feel "weak", he needs to get over that. He feels he is rare and sick but he needs to learn up a little on gluten and the human race. He is only the tip of the iceberg. All the obesity around him in young people, the early onset diabetes, it's all connected to wheat and carbs. It makes him feel like you are treating him like a "sick" person, and catering to him, when he does not want to be treated that way. I can understand that. You need to quit doing it "for him" altogether. And he needs to quit viewing himself as sick or inferior as a man. He is actually quite normal. It is the last 10,000 years of us eating grains that is abnormal.
He probably thinks he has been heroically good and it's like the movie when the air traffic controller says, "Millions of safe flights and nobody says a thing but one little plane crash and they're all over you about it."
People don't get the 100% OCD requirement. And that Celiac Disease is a FAMILY disease. If you have the genetic tendency, then you could at any time come down with frank digestive symptoms, but more insidiously, decades of untypical damage. Destroyed thyroid, TYPE 1 DIABETES for the love of God. That alone is reason enough to take no chances and keep your kids completely gluten free.
Maybe that will get his attention. Silent Celiac disease can cause a child's pancreas to quit, dead in its tracks, we're talking giving insulin shots to a 5 year old, pricking his finger several times a day. I've seen a family go through this. You do not want to go there.
Thyroid failure, bone fractures, intestinal cancer, all of it linked to Celiac. It's not about tummy aches and the trots. You are saving your children from hellish results. The negative blood test is completely meaningless. It is one point in time. A snapshot. All it means is the person might not have active villi destruction at this point in time.
I don't know, maybe summarize this in a 30 second statement and give it to him, with apologies for not appreciating the extent to which he already complies, then let him stew in it awhile.
To be clear, I'm not saying you don't appreciate what he already does, I'm saying if you say that to him, at the same time you give him the nasty facts, it'll be like a conduit to open his brain to hearing you. At least my husband seems to respond to that. He needs to hear the actual words, "I notice what you do and appreciate it." After that he seems open to listening to new information and my point of view, for about 30 seconds. LOL.
Do you have a separate toaster? Are you SURE nobody sneakily uses it? How about microwave, wooden spoons? Pots that have small pits or scratches, that even washed could hide gluten? Separate cabinets? Have you considered airborne particles? Crumbs dropping in your silverware drawer? Cosmetics, shampoos, lotions, hair dye, etc?
I agree about the antibiotics also, it may have messed up your gut bacteria. I also agree cuts taking a long time to heal is not normal. Also the tingling and other symptoms you mention could be signs of certain nutrient deficiencies that may be continuing to affect you even if your villi are healing. But I worry that you still have diarrhea once a week. It is not really normal at all, unless you can account for it by eating a ton of watermelon at once or something.
YES and YES. You have neurological symptoms, fatigue and digestive symptoms, Celiac Disease is definitely in the differential diagnosis. I recommend finding a good gastro intestinal doctor as soon as possible.
Welcome! I think you nailed it. You probably understand how the healthcare system works with diagnosis codes. Insurance reimbursements, disability claims, decisions about risk vs benefit for treatments and drugs, etc. They want black and white, nothing vague.
Everything needs to be scientific and if it is not, they fake it as best they can, so they can declare something on paper. Fibromyalgia is the classic example. We know you are sick with something, but we cannot identify a virus or bacteria that is the definite cause so we come up with a list of things to help us decide whether or not you fall into this definition. ("Diagnostic criteria"). Most chronic or autoimmune diseases have this sort of diagnostic criteria. If you meet x number out of y things, you are officially diagnosed.
You've probably read about the intestinal biopsy being the "gold standard" for diagnosing Celiac Disease. There are two other ways. One way is positive Dermatitis Herpetiformis. The other is to meet 3 of 4 criteria, being positive blood tests, positive biopsy for certain changes but might not be the complete classic flattening, positive response to a gluten-free diet and having HLA-DQ2 or DQ8 genes. (As far as I know, I'm not a doctor and I don't know if all doctors use this new diagnostic method, it is more updated than requiring the completely flattened villi.)
Right now you feel the solution of being gluten free is working, so why get a definite diagnosis? One thing I worry about is unplanned hospital stays, and even worse, old age care. Right now the Meals on Wheels program my mother uses does not even have a gluten free option. Institutional food for the elderly seems to be suffering budget cuts. Gluten free eating can be expensive, so later in your life if you are dependent on a facility of some kind to feed you, you might need doctor's orders to qualify for the gluten-free diet.
To answer your question, no you can not be diagnosed (at least in the official sense) on symptoms alone. That meets only 1 of the 4 criteria. (Your symptoms went away when you went off gluten.) If you are already eating gluten free, you may not be able to get a positive on either the blood test or the biopsy. The doctor is right, the blood tests are not reliable, and there are many different ones, some more sensitive, some more specific, but in general, the celiac tests are very specific, meaning if it is positive, it is reliable, if it is negative, it could be a false negative.
Yes, I too feel the need to have something concrete. You may not realize why you want it, but subconsciously maybe you've already wondered what would happen if you were to be hospitalized for an accident for example, and lost control of your food. YES, you want something in your "chart". But it does not have to be confirmed Celiac. Talk to your doctor about what she is putting in your record. It should be something like "gluten sensitivity" either celiac or non-celiac. At this point they have not proven you one way or the other. But talk to your doctor about making sure whatever concrete diagnostic code she is using will get you qualified for gluten free food.
This may vary depending on where you live. I don't know if there are places and people who take "Celiac" more seriously than "Gluten Sensitivity", but they shouldn't. The non-celiac version can make you just as sick. The firm diagnosis for Celiac would mean you have completely flattened villi of the small intestine. Even if you do not have that, you may in the future. Your sensitivity may be a precursor to the intestinal damage. If you want more answers without the risk of an endoscopy, you can get the gene test, but if positive will still only give you 2 out of 4.
But the important thing is what your doctor puts in your record to ensure that any future doctor, or the insurance companies, or institutions, will comply with your gluten free diet. AND if you are like me, will give you something authoritative to tell your family, if you think any of them might have gluten issues but you have trouble getting them to believe your "theories".
I am in the same position as you are. I do not want a biopsy because I have had horrible reactions to most procedures and surgeries. It is not worth the risk for me at this point. But I am very aware that the longer I go the less chance I have of getting a positive biopsy if I don't go for it - I cannot consider doing a gluten challenge, I think it would kill me.
This is a decision point many if not most of us have had to go through - ideally we would have had blood testing and biopsy BEFORE going gluten free, but for many of us, we figured out for ourselves what was going on and tried the gluten free diet just to see, and were blown away by the results.
It will be nice when the doctors get on board and start thinking of celiac before the patient does, and order the testing before we get the idea. That is how it is supposed to work with doctors, right? You go to them with a problem and they come up with a few possible answers and test them out. Right now I think everyone with a "fibromyalgia" diagnosis should be tested for Celiac. Neurological manifestations of gluten sensitivity are very common and fibromyalgia is more and more understood as a CNS/nerve fiber disorder.
EDIT: Good links, posters, you got them in while I was writing my tome.
Like you I was sick for years. The doctors seem so clueless. I think you should talk to the GI doctor with an open mind and if he thinks you should do the endoscopy, go for it. If you get a positive diagnosis it will probably lead to you putting all the pieces together and understanding all your health problems. But it does take time. There is so much information to absorb and you have to go find it yourself, it seems like for some reason doctors just have very little awareness of how to handle this. They will give you the diagnosis and say go gluten free, but you will be on your own to figure out your nutrient deficiencies and how to correct them and how to find gluten-free food and so on. But the info is there. This is probably the best general website, you have come to the right place!
There is a book called something like "Celiac the first year" written by Jules something my memory is so bad today and I'm in too much a hurry to look it up. She gives a month by month plan to absorb all this. Some things are not applicable to me like she tells you how to handle hosting dinner parties, HA HA HA, I haven't had a "dinner party" in 35 years. But anyway, if nothing else the book helps calm you down and slow you down so you can take things one step at a time.
Everything you are feeling is normal. It will take time, the people in your life will slowly come around. They too are totally clueless but as you gain knowledge and confidence they will learn to appreciate your new eating restrictions, hopefully. Best of luck and welcome!
Well, I WAS going to recommend "Buried Treasure" liquid vitamin C but I cannot confirm that it is certified gluten free. I used that a few months ago and I loved it. It tastes like orange juice (you just mix a spoonful into water) but without all the sugar, and it did not upset my stomach like whole fruit does.
Right now I need to get a lot of good vitamins and I want to order more but their website is hard for me to understand for some reason.
Another thing I liked about the liquid C was that it was complexed, not just ascorbic acid like a lot of C products.
OP could be me, I got my ears pierced at age 16 and had a terrible time healing, Looking back, a friend did it with a sewing needle and put plain cheap posts in. Eventually I bought gold posts and they healed a bit. But over the years I could never wear any earring but gold or sterling silver.
I also have the dysidrosis. I have read that it is connected to nickle allergy but it is not a direct contact. I get it in both hands and feet and I know I'm not touching nickle with my feet when they are in socks and shoes.
According to the studies it is an association, not a cause/effect. So not that I know about gluten sensitivity, I feel certain the dysidrosis is related to the gluten and the gluten is related to the nickle allergy.
Now, I can't even wear gold or silver. I've tried the plastic earrlings and they don't work either. I think my system is so sensitive now that it is the contact alone it rejects. I get rashes with clothes that are supposedly clean and detergent free rubbing in areas where I think it is just the touching I'm reacting to. I hope gluten-free helps all this stuff.
I just found out I've been walking around on a broken foot for two months. I'm in a lot of pain. The doctor is sending me for a bone scan. Seriously, is extreme exercise worth the risk? I realize some people have a devotion to it, but if your motivation is health and fitness, there is some research that puts doubt that hard exercise is really that healthy for you. Running causes damage to feet and joints. Walking is much safer. The artery damage that causes heart attacks is not really connected to exercise but there is a widely held myth that it is. We are bombarded with messages that exercise equals heart health, more is better, but if you dig into the scientific studies, the truth is that only hold to a point. If you are a complete couch potato, you will benefit from exercise, but it is not a linear relationship. The benefit declines the more intense the exercise until it gets to the point you are at very high risk of injury with little or not extra heart health benefit. Far more important is to heal your digestion and consume the right nurtrients to prevent cardiovascular damage. However, if you want the buff look, training is necessary. There is swimming, rebounding, braces for weak joints, and so forth, to try to prevent injury.
Forgive my rant, I am not really objective right now because of my foot, I feel like I need to warn everybody else because of what I did. I only hit it and had a bruise, and didn't even think to go get it x-rayed. Now the damage is much worse because I didn't get it treated immediately. It's possible celiac has weakened my bones, I think all celiac/gluten sensitive people need to be very aware of sport injury risk.
"End Stage Celiac" is not like end stage cancer. Don't let the term scare you. It means your small intestine villi are completely eroded flat and your digestion is all screwed up. It's the "end" of your villi, but not THE end. Your villi can heal and re-grow. In fact so easily and fast that just a few months on a gluten free diet can screw up your tests for the disease.
Fat is digested by bile from your liver and stored and concentrated in your gallbladder. If you have floating stools, and you've had your gallbladder out, you can try taking a bile salt capsule with every fat containing meal. When I stated the bile salts, my poop sank, and smelled better! This also means the nutrients are being absorbed better.
The hunger and cravings might be carb cravings. First, I agree with the others, she should be tested for Celiac as soon as possible.
For hunger, good fats are the answer, along with deleting sugar and carbs.
When I was on a carb roller coaster, and I switched off the carbs, at first, I was not able to get a lot of healthy foods, but over time I learned to find sources. But at first, here is what I did. Within 2 days I had a complete turnaround. For me this was like an emergency treatment and it worked.
FIRST AID FOR CARB VICIOUS CYCLE
1. Eat no sugar, no juice, no fruit except berries. No honey, no maple syrup.
2. No grains at all, no potatoes, no starchy vegetables.
3. No milk because even whole milk has too many carbs
4. No vegetable shortening, or regular vegetable oils, no mayonnaise made with soybean oil
5. No bread, no pastry of any kind, no cookies, cake, etc.
Eat small meals over the day of these sorts of things:
Full fat cream cheese
small servings of NOT LEAN beef, chicken or pork, the fattier the better
Organ meats (beef liver, liverwurst, chicken heart - chicken giblets minced fine and briefly sauteed in butter with salt and pepper)
Butter (no margarines or butter substitute products)
Heavy cream (no half and half)
Dark greens like spinach or mixed baby greens with cold pressed olive oil and vinegar only (no bottled dressing)
Raw nuts (not roasted in oiils)
Hamburger with no bun, no condiments (ketchup has sugar)
Fish oils, like bottled cod liver oil
maybe some fibrous vegetables, in small amounts but for me my stomach would not tolerate much fiber
Ideally, all the animal meats should be grass fed, wild, caught, organic.
The cream and the cheese ideally should be goat and the eggs should be duck, quail, anything but chicken, and free range, etc.
But for now if you can't get grass fed and strange eggs, go with the usual for the short term to break the carb addiction cycle.
This should be a short time only diet. The meats if standard feedlot meats will be unhealthy, and she may have sensitivities to cow's milk and chicken egg, however, this program for a few days will break the carb craving cycle and give her some motivation and energy to work on solving these problems.
If she has had her gallbladder out she should take bile salts (Ox Bile is a good brand).
The issue at her age is that she (if gluten sensitive) is suffering the end result of many years of nutrient deficiencies. Has brain fog and physical pain and can't find her way out of it.
Do some research in these areas on your own and get her in with the doctor for celiac testing, thyroid too. Blood sugar, very important. Could be many things going on. Don't expect the doctor to be thrilled with my suggested diet, but research it for yourself and your mom, it is her choice of course, but from personal experience, this is a very fast way out of carb Hell.
It would be a good idea to buy blood sugar test kits even if she is not diabetic, she could be headed that way, and you can check her blood sugar without waiting to get in to the doctor.