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
Sounds weird, I know, but it's actually rather tasty - they have good texture and flavour right out of the fridge. Lots of people use a mix, but they can be rather sweet. The best set I've had came from a recipe on this site - 1c flour, 1c milk, 1 egg, 2 tbsp sugar, 2 tbsp oil, and 1 tsp baking powder. Mix everything together and cook in a hot dry skillet. They fluff up about a quarter inch (just like the old non-gluten-free pancakes!) and make a nice dense half to a sandwich. I'd cut back the sugar to about 2 tsp if you want to use them with savoury or spicy fillings instead of sweets (being a pb&j girl, I never worry about the sweetness).
I've not used that particular recipe, but I'm betting that the problem was the halving - shortbreads are tricky recipes to tinker with, and halving rarely works well with them. (I mentioned your problem to my nan, who makes to-die-for shortbreads. . .sadly not gluten-free. . .and she suggested this as well). If you must halve them, you need to slightly-more-than-halve the fat, and slightly-less-than-halve the flour. Alternatively, you can make flourless cookies with almond butter (1c almond butter, 1c sugar, 1 egg and 1 tsp baking powder) which have the right flavour and texture but without the dairy and the hassle.
Start with your doctor - make an appointment, take a copy of your private results with you and explain that you have been diagnosed privately as celiac, and ask your doctor what, if anything, you need to do to get the celiac diagnosis into your medical records. Personally, I didn't even have to show my doctor anything (though she has since requested my complete medical records from when I was living abroad for other reasons), I explained that I was diagnosed as celiac, and on a strict gluten-free diet and that was that.
If your doctor refuses to do anything (either to test 'you' or to accept the external results), you need to ask him or her to put their refusal in writing. Once you have this, call your primary care trust (you can get the number from the NHS website) and ask about the procedure for making a complaint against a doctor. Make a formal complaint about the doctor's refusal to treat/test you for a recognised medical condition which has the potential to be life-threatening if untreated (and which you have proof you have). Once you do this, your PCT has a legal obligation to provide you with a physician who will treat you or run the necessary tests to obtain treatment for you.
A word of warning - if you are students and registered with a university GP, you most likely need a new GP (again, call your PCT for suggestions). . .my university GP was such crap that when I went in to get antibiotics for a sinus infection he asked if I was allergic to any drugs, and I said yes, Penicillin. Three guesses what he prescribed.
Don't give up! There are excellent GPs out there. . .(though to be honest, the 'financial support' is virtually nonexistent, and you'll probably learn more from this site than you will from a dietician on the NHS. . .they just don't see enough of them.) BTW, it is perfectly possible to eat gluten-free in the UK on a tight budget without NHS support. . .I did it. Think lots of fresh veggies; and rice is an awesome staple. . .cheap cheap cheap (skip the boil-in-bag stuff. . .I promise you'll get the hang of cooking it really quickly) - put milk and sugar on it and eat for breakfast! Pad Thai noodles are usually gluten-free and almost as cheap as real pasta, and check your local pharmacy - some of them double as 'health food' shops and sell the same stuff they give out on prescription, but for not much money. Dove's Farm does an excellent flour mix (the gluten-free bread flour is better than the baking flour), and usually cheaper than buying bread (I make a dozen muffins most weeks - the bag of flour costs
What do I eat for breakfast? Anything in the fridge.
As far as I'm concerned, if it's in the fridge, it's food and it's appropriate for breakfast. Because I work insanely unpredictable hours, I need my meals to last - sometimes up to eight hours (though I try to keep it to four or five). This week, for example, I had pork stir fry on Monday, leftover rice with milk (plus nuts, raisins and dried fruit. . .high protein, high carb, long lasting) on Tuesday, leftover roast lamb with boiled potatoes on Wednesday, plain dry pancakes with apple and peanut butter on Thursday, Friday was cranberry pecan muffins, and this morning I had cereal with dried fruit and milk.
Ever since I lived in Austria, I've been addicted to rice flakes - they're rolled rice (think rolled oats). . .they look a bit like flaked cardboard, but they taste yummy, particularly with dried fruit and milk (though NOT raisins, for some reason. . .). A very good gluten-free substitute for all those ex-granola junkies out there. Only problem is they can be a bit tricky to locate. . .I'm in heaven since my little local health food shop started carrying them all the time.
as there will be people there who can. . .they are the experts when it comes to celiac disease and its neurological side effects.
Best of luck, (and please, I know how hard it is to do this, but please keep your daughter on gluten until you see the GI. . .if you're lucky, the doc can test for celiac disease then and there, and then you can take your daughter gluten free)
The standard is to do blood work at 6 months, 12 months and 24 months following diagnosis - with more frequent tests at your physicians discretion if dietary difficulties are encountered. If your daughter panics at these (I do too. . .) you might consider talking to your doctor about getting a pediatric specialist to draw your daughter's blood (your local children's hospital or children's ward should have one on staff).
Regarding Camryn's constipation. . .I might venture to suggest there's too much fiber in your daughter's diet. Personally, too little fibre means soft stools, too much fiber means constipation. Perhaps ease up on the celery for a bit, see if it makes a difference?
On the subject of horses, I've not ridden since my diagnosis (I live in a big city now and at $100+ an hour, it's a bit expensive!) but I would say that my only area of concern would be feeding (as horses have a much more efficient digestive system than we do and the grain proteins should not be excreted). Make sure she wears long sleeves and trousers at the stables, as well as gloves when she's around the horses (and make it very clear that she needs to not touch her face until she's washed up). If she grooms them, talk to your stable about having her groom in an area away from feed bins (ie, outside stalls). If you are very concerned, you could look into finding a stable with a grass ring (rare and expensive) but my instinct would be that she is okay. My grandfather is not celiac, but is seriously allergic to wheat - so much so that he left the farm because harvest was toxic and ends up in hospital if he eats it - but he's fine around horses as long as he doesn't handle their feed. And, of course, keep her horse clothes separate from the rest of her stuff, and talk to your stable about the possibility of her showering after her ride/chores.
Of course, if you're brave enough, you could also keep her away from horses for five weeks (and be extra-vigilant about her diet) and have her blood work re-run as a baseline, and then let her ride for five weeks (still being extra-vigilant about her diet) and have blood work run again. . .if her numbers spike, you know why.
I think I've already posted in one of your other posts, but just in case I'm mistaken: yup. I was asymptomatic (reasonably well adjusted socially, physically active, and a growth chart straight out of a medical textbook). And VERY positive on the blood tests. Enterolab wasn't around yet, so I don't know what my results would have been.
I know how hard it is to put your little one through all of those tests but maybe look at it this way - more information is always good, and celiac disease really isn't as scary as it looks right now (he could, for instance, have diabetes and need an injection every day. . .). And if you are seriously concerned about the blood test being a traumatic event, talk to your pediatrician about having a pediatric serologist draw the blood (your local children's hospital or pediatric ward probably has at least one on staff). . .this can make a huge difference to the trauma of the event. I've seen two year olds have blood drawn in this way without so much as a whimper.
And remember that you are his mom - you see him every day, all day. If you think something is wrong, it's probably worth checking out. . .and if you don't do it and he turns out to be celiac, you may regret it. Better a simple blood test now than discomfort and a biopsy later.
I would venture to suggest that the best thing you can do to comfort your girlfriend during the aftermath of an accidental glutening is just to be there - Baer used to rent one of my favourite movies (I'm never clear-headed enough to follow a new one), keep my juice glass full, and a blanket close to hand for the chills, and then we'd cuddle. Distracting her with light talk is also good (though be prepared to do most of the talking. . .). . .I love to read, but get horrible vision problems and light sensitivity when I'm glutened, so if a movie wasn't an option (or we'd finished it) Baer would read to me. . . .
If she has longish hair, you might learn to braid it for her (it can be really nice to have someone else pull it out of the way. . .and having someone else brush your hair can be very relaxing). Other big-scoring gestures are to change the sheets when the worst is over (I hate sleeping in sheets that I've just spent hours lying around in sick); a foot rub (maybe take a reflexology class together. . .you can use it to ease upset tummies and headaches, and in my experience, it works. . .); giving her a bath (if you are lucky enough to have a tub); or doing the dishes (I know it sounds weird, but I there is inevitably a stack of dishes that need doing, and it's really nice to not have to do them when I'm feeling crappy).
The tough part about celiac disease is that there's not really anything anyone can do. . .except keep you company.
Having read the links people have left here, I'm skeptical about the idea of a pill that could do for celiac disease what lactaid does for lactose intolerance. For one thing, the researchers seem to be concentrating on the intestinal attributes of the disease. . .what about those of us for whom the digestive system is not a problem? If it won't help me, even if it does mean others can eat gluten without symptoms, I think it would make my life more difficult, because people would assume that it was no big deal, because there's a pill for it. (I already have tons of trouble explaining to people that I'm not most celiacs, and I have celiac reactions to corn, soy, millet, buckwheat and oats.)
I'm also skeptical about whether it would work at all - autoimmune reactions are tricky (witness the trouble we've had with AIDS and cancer) and genetics are even more complicated (there's a reason why researchers stick to tinkering with plants, bacteria and viruses. . .it's easier, but even that still has unintended consequences). There are hundreds of ways in which you might be able to stop an autoimmune disease from occurring or progressing, but no guarantee that any of these ways would work - take AIDS for an example. The best minds in the business have been looking for twenty-odd years; eight drugs (to my knowledge) have made it into Phase 2 human trials and none of them actually work. A few of them even do the opposite of what they were intended to. Then there's also the case of the British drug company who did phase 1 trials of a drug designed to block the immune system (to help deal with autoimmune diseases and cancers) which showed no negative side-effects in apes, but nearly killed six of the seven healthy volunteers (elephantosis, kidney, liver, heart, lung and pancreatic damage, and ended up in comas!!) - three of whom now (six months later) have late-stage cancer as a direct side-effect of the trial. We know much less about the human body, immune system and genetic code than we like to think we do.
And if a pill worked against all the odds. . .would I take it? Probably not, except as a one-time dose to ease symptoms of an accidental glutening (though knowing my luck, they'd probably put cornstarch in the pill. . . ). Do you realise just how cheap that pill would have to be for it to be cheaper to take three or four a day instead of buying gluten free food? My weekly spending on specifically gluten free food (ie, foods I would not eat if I were on the celiac pill) is about $10 (being generous). If I take a pill before each and every meal, that would be three pills a day, seven days a week. That would mean that the pharmaceuticals company would have to be able to make, market, and sell this wonder drug for less than 47 cents a dose. . .To give you an idea of the enormity of that demand, the birth control pill, when purchased as a generic, at cost, runs about 85 cents a dose. Singulair (to which the celiac pill has been compared) is about $3.17 a dose; and a drug designed to interfere with the immune system (similar to what a celiac pill would have to do), such as interferon is, at cost, about $150 a dose. And then you STILL have to pay for gluteny food. Is life as a celiac really that horrible?
So last weekend, my neighbours (really friendly couple) knocked on my door with a steaming bowl. We've just had breakfast, she said, and I made this oatmeal. We've got tons left. . .would you like a bowl? Sure, I said.
Would you believe I finished the bowl? After nearly seven years!
God, I felt soooooo stupid the rest of the day (as well as sick!)
I know it's hard, but try cutting corn out as well. . .my neuro issues settled down initially, and then spiked up again when I put corn back into my diet. I've been corn and soy free (as well as gluten-free) for four months now and the neuro symptoms are completely gone.
Also make sure that your workspace is gluten-free (clean your desk, telephon and mouse, and change your keyboard and don't let anyone use it!). . .I notice that whenever I change jobs, there is a period where I'm educating my coworkers where the neuro issues come back in milder form until my environment gets properly under control.
I'd like to comment, although I was diagnosed long before enterolab came on the scene. I'd like to point out that fecal fat content is only a reliable measure of celiac disease in people who are experiencing substantial intestinal damage, and is thus not necessarily a reliable method of testing in asymptomatic (or very young) celiacs. Under 3 years old, the blood test is not as reliable as it is in adults (I'm not sure of exact numbers). The current research, however, indicates that it is entirely possible to have celiac disease (ie a systemic autoimmune reaction to the presence of gluten in the diet or environment) WITHOUT intestinal damage. Granted, this is rare but I am one.
When I was diagnosed with celiac disease, there were no outward symptoms. I was healthy, a good body weight (even a little overweight), physically active, the tallest one in my family. My growth chart was so perfect it might have been an illustration from a textbook. I had regular bowel movements (though at 10 I had problems for a year or so predicting my bowel movements), no abdominal discomfort or bloating, no nausea or vomiting. There were just a few things that suggested something might be wrong: I slept, when allowed to, ten or twelve hours a day (doctors put it down to intermittent insommnia... sleep deficit). I had a stutter (which hardly anyone noticed because I hardly ever spoke without lining up the words and their constituant sounds in my head first). And I had acquired at fourteen the self-destructive habit of scratching myself until my skin bled. (Stress, said doctor after doctor after doctor. Take her to a shrink.). Thankfully, the last doctor to put me down as a highly stressed individual also decided to run every blood test he could think of to "stop you going to the naturopath, the faith healer, the chiropractor, and every other quack out there instead of the psychiatrist".
A week later his office called. Could they run one of the tests again? "We think the lab has made a mistake." So we go back, have more blood drawn, they run the test again, priority, and we go in the next day to find out the results. My IgA proteins have come back higher than they've ever seen before - a normal ratio is less than 25 to 1, the average celiac is diagnosed with a ratio less than 100 to 1. Mine was 2,500 to 1.
My advice is this - put your son through the blood test (I know it's traumatic, but if he IS celiac, and you catch it now, he won't suffer all his life from undiagnosed celiac disease) and do the allergy testing as well (it MIGHT be an allergy, instead of celiac.) Put your son back on gluten for AT LEAST three weeks before you do the test. . .it WILL make a difference. (The first test they ran, my numbers were as above, the second test happened after I had minor surgery when I hadn't eaten (gluten) for a week. . .my numbers on the second test were 2,450 to 1. . .enough difference, in smaller numbers, to change the diagnosis!). I suspect that if you do this, the test will come back positive.
The bottom line is this: if your son has genes for celiac disease, he probably has it. The fact that he is asymptomatic is neither here nor there. . .in fact, it is cause for greater concern because celiacs who are asymptomatic are much more likely to suffer neurological complications down the road. And trust me, you do NOT want to go through that. I had absolutely no idea how sick I was until I wasn't sick. . .it was just the way my body felt. Oh, and please make sure that your naturopath and your ped each know what you've been telling them and what they've said. . .it is important that all of the medical professionals in your son's life know about the others. Good doctors shouldn't care that you have second (or third or sixth) opinions.
Let me say this again: a Naturopathic Doctor is a MEDICAL doctor (someone who went to an accredited medical school. . .like Bastyr) who is trained to use traditional homeopathic remedies in tandem with or as a substitute for pharmaceutical remedies. A naturopath is not a doctor, nor is a chiropractor, except is the same way that my cousin is, who is a "doctor" of computer science. The gold standard is to ask what they can prescribe. If they cannot prescribe antibiotics or grade three pain remedies (prescription pain relief), they are NOT a doctor (as a side note, you'll notice that your MD, your NMD, and your dentist can prescribe these, while your naturopath, along with your chiropractor, your hairdresser and your mechanic, cannot). Bastyr is one of the few colleges in North America which provides students with medical training that is elsewhere considered to lead to a degree as an NMD.
I am not saying that there are no good naturopaths (ie, providers of homeopathic remedies who are NOT doctors), nor am I saying that there are no bad MDs (trust me. . .I've met my fair share). What I am saying is that there is a difference (a substantial one) between a Naturopath and a Naturopathic Doctor, just as there is a difference between a nurse and a brain surgeon and that the differences are important (would you really trust a nurse to do brain surgery? what about an EMT?. . .who, by the way, takes a three week course, unlike many naturopaths who "qualified" after a weekend online seminar).
I am the first to admit that it was my NMD dermatologist who finally sorted out my disfiguring skin condition (in five minutes, no less). . .while no fewer than eight conventional dermatologists threw up their hands in despair. And I see an NMD GP whenever I can get my hands on one. . .simply because he makes his remedies right in front of me (and they work), unlike my MD who has them made anonymously in China somewhere.
And you don't need a science degree to go to medical school, just a selection of the right courses. I have a friend who is now an MD, but her undergraduate degree is in music.
I can't really say for sure, because I've not used Glutino's pancake mix and I don't know what pancake recipe you're using. My suggestion, however, would be to use the pancake mix as a substitute (1 for 1) for the flour in a waffle recipe. That should work.