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
Did the doctor specifically say there was damage to the villi on your son's biopsy? "Evidence of a food allergy" isn't quite as clear ...
You have been seeing such good results on the gluten-free diet that that is already a strong indication that being gluten free is a good plan. There are tables available that show the probability of having celiac disease with various results on the various tests. Also, if the blood tests are positive now, you can have then redone after a period of being gluten free to see if the values have fallen back to normal range. That would be an additional indication.
As for apparent gluten reactions to an apparently gluten-free diet ... I'm still wondering about a similar incident a number of weeks back when my son and I also both reacted with our respective set of symptoms with no obvious change in diet. No idea what happened. I checked absolutely everything, as far as I can see (e.g., called back companies I'd already called to confirm continued gluten-free status of a product, etc). One of the vagaries of life I could do without, but at least not very frequent!
No, I would never dream of saying "no birthday cake for you" - that's exactly the point! On monday there was a birthday party and my son had his little (gluten-free) green frog cupcake like everone else. The thing I'm thinking about is more about the transition from my controlling the diet altogether to his taking over and really "getting" it. As Nini mentioned, things appear to be clear, then suddenly they're not, and I guess I just think about what that means ... maybe too much thinking, I don't know. The thinking comes from the fact that there have been almost no exceptions with his seeming so easy-going with the diet.
I eat gluten free too, but man oh man they certainly don't at daycare. Looking at the menu I see that there could be ONE lunch in the month he could have, that is, one that doesn't naturally contain gluten.
Nini, I'm just thinking about the transition you and your daughter had to make - going gluten-free at 3! I can imagine that wasn't so easy. My son went gluten-free before he had any real hard and fast habits with gluten foods, certainly nothing he would now remember. By the way, I copied out a recipe for gluten-free oreo cookies from somewhere during one of my regular jaunts into gluten-free kids' treats equivalents. I haven't tried it yet, so have no idea what it's worth. Probably a whole lot of work!
ANyway, I'm starting to go off in too many directions. Day off work today and I'm basking in the luxury of being able to ramble on paper.
how old is your daughter? I'm interested to know how the learning process went about staying away from gluten things. I have been explaining to my 2 1/2 year old basically from the start (as of 18 months) that certain things make him feel sick but others don't. He seemed to understand from a very early age as he just about never asked for anything that gave him such bad pain. It has been hard, and I'm sure you know this from first hand experience, to see him puzzle over not having the same things as everyone else (especially when I wasn't prepared enough for the spontaneous treats that seem to happen very often at daycare - I will never forget arriving to pick him up and discovering there had been an unannounced birthday party with cake. Perfectly calmly but in a little voice he announced as we were leaving "no happy birthday cake for me, no, rice cake for me". I fought tears all the way home. He actually brought it up sporadically a number of times over the following weeks).
ANyway, that topic obviously has an impact on me still! And I thought I was doing so well!
I guess it really is going to be a process, less obvious than I was thinking for a while. Maybe the grabbing the oreo comes from the same place as the sadness about "no happy birthday cake for me." I have heard enough about kids who just become matter-of-fact about the whole business, so I think it will work itself out with time, as long as I can be sure he doesn't feel particularly deprived, or standing out, compared to his friends. The gluten-pain connection is so evident to me, but there are different kinds of pain. Here's to hoping the emotional pain is a short phase!
Here's the weird thing: it turned out he had virtually no reaction. I am still scratching my head as it is the first time ever this has happened. He has reacted to gluten like clockwork always, up until Friday. He had the worst reaction he's ever had about 10 days ago, which is precisely why I was feeling SO anxious in anticipation of Friday's. So now I'm wondering a) did he actually not get anything or has he suddenly been catapulted into a new kind of reaction? He seemed only to have a gurgling stomach and headache - none of the screaming and writhing about. It's a mystery. Any ideas?
The other thing I did want to say is that I feel I need to stand up for the daycare workers who have really been fabulous. They have watched him very carefully for 8 months with virtually no accidents. This is no mean feat with 2-year-olds, who drop food everywhere (when they're not throwing it!). I've seen what the room can look like following lunch or snack, so I know it's amazing there haven't been more accidents!
Sitting here reading these posts is bringing my own experience with my son (now 2 1/2, and gluten-free for over a year now - wow, time flies!) back with a vengeance. I felt so alone at the time (no help from the pediatrician, unfortunately), and can remember so vividly those feelings of being beside myself with worry, knowing something was very wrong but having so much trouble pinpointing it... until I started the food diary and things got clearer and clearer. Cheerios figured big as a deciding factor, I recall. One Cheerios episode is forever branded in my memory, and there has been no intentional wheat since that day! By the way, I also hadn't yet become an expert at reading labels and had taken the "100% whole oats" on the front of the package to mean that that was all they contained. Oops. Plus, I had only started by eliminating wheat at that point, never actually having heard of celiac disease and the whole gluten gang.
Get me on this subject and I feel I could go on and on and on and ...
But one point, as you are starting out: If your son is anything like mine, you may discover that he becomes increasingly sensitive to smaller and smaller amounts of gluten the longer he is gluten free. This is when you become VERY good at not only reading labels but also calling companies and posting "do any of you know if such and such a product or medication contains even trace amounts of gluten?" messages.
In terms of pain location, my son hasn't ever been more specific than "tummy", and I am lucky enough not to have abdominal pain as a symptom.
I'm going to send my mother the links you provided. Also thanks Kaiti for the heads-up about the other thread. Lots of people are obviously dealing with symptom issues not to mention doctor issues. The two are clearly linked. Having a doctor who is uninformed can make it very hard for the patient to feel committed to the only available treatment when symptoms are (ambiguous (a little knowledge is a very dangerous thing ...). More info may do the trick in my mom's case, but I think there's also some kind of strong urge on her part to discount the whole thing that's running pretty deep, for a reason I just can't quite grasp. Anyway, as many have already said, it's a personal journey and a personal choice.
I just had a call from the daycare. Apparently my son has just eaten an entire mini croissant. I am trying to evacuate my feelings of anxiety before I go to pick him up. The reactionm should start in 1-3 hours from now. He hasn't eaten anything of the sort since he started the gluten-free diet over a year ago. Last time he had a gluten accident it was to medication that continued such tiny trace amounts that nothing was indicated on the bottle. That time he screamed hysterically for 2 hours. The time before the reaction was to one apparently gluten-free potato chip that was produced on a non-dedicated production line. I'm feeling stressed at the idea of what this comparatively enormous quntity of gluten is going to do.
I guess I'm also feeling surprised. I really thought he had understood for a long time already the connection between eating bread-like things and the severe pain he experiences. I'm feeling baffled.
Also - knowing full well that we are about to have a very difficult afternoon to say the least, does anyone have any suggestions about calming the gluten induced cramps? Everything I have read to date says there's nothing to do but wait til it's over. Still, hope springs eternal ....
after a period of refusing to get tested because she "knew" she didn't have celiac disease, my mother has just been diagnosed. Her doctor has made the suggestion to her that since she has no symptoms (only osteoporosis, hypothyroidism, arthritis, chronic allergies and sinusitis, balance problems and chronic fatigue), she doesn't have to go gluten free. She agrees. Obviously in the long term it will be her decision, but I would like to give her something to read on the subject, since my telling her what I have learned about this issue clearly isn't persuasive enough.
So, could anyone point me in the direction of a medical journal article that covers the subject of what people with no classic celiac symptoms should do regarding the gluten free diet? Any input will be most appreciated. Thanks,
my son has incredibly severe reactions to even the smallest traces of gluten and he has never had a reaction to any of the flours we buy regularly in Asian shops. Lucky you to have found potato starch there, I still haven't found a reasonably priced one (I don't have a clue why potato starch is so expensive - just because of low demand? Is there some difficulty in the process of making it??). We do buy tapioca, sweet rice flour and regular rice flour as well as various rice noodles in Asian shops for significantly less money than in the health food shops.
figuring out exactly what to eat so you feel your best AND have enjoyment is not necessarily and easy thing to do!
Apart from the other suggestions, I'll just mention that dairy products in general appear frequently to be not well tolerated by people with celiac disease, especially in the early stages of the new gluten-free diet when the intestines are in a process of healing. Some people find they can go back on dairy with no problem 6 or 12 months later, others discover they're just better off without it. In terms of my own experience, taking gluten out of my son's diet made an initial very positive impact, but full recovery occurred only after we also removed all dairy products. I'll also repeat what others have already said: really feeling your best may simply take time, even if there are no other real problems. Being followed by a good doctor is obviously important (knowing what to test for, given whatever your set of symptoms is), but seeing a dietician (again, someone who has experience with your 2 conditions) can also be pretty helpful not only in terms of making sure you're getting the vitamins and whatnot you need, but also to make suggestions of ingredients to use that you may not have thought of. You'll also find lots of food suggestions in the cooking section here and you'll figure out what works for you in terms of ingredient substitions over time (we have had to learn to do lots of substituting due to a wide array of intolerance!). One foot in front of the nest will get you on a pretty good road!
taweavmo3 - crying and clinging, not being able to go out ... that is exactly what we went through!
Also, in terms of gluten accidents, I think that the longer my son is gluten free the worse his reactions to even the smallest amounts of gluten are getting. He reacts to a trace amount in the same way he used to react to a full serving (e.g. we had a terrible bout following his taking one (one!) gluten-free potato chip at a daycare birthday party that was made on a production line that makes other gluten-containing items - where the company puts a warning on the package "this product does not contain gluten but sensitive indiviudals may react ..."). I am really hoping for his sake that his reactions will get less severe with age, but a lot of adults unfortunately seem to describe the same thing.
The other thing I just wanted to underline was, Debbie, I know how hard it can be, doing this on your own. My husband also just got back after a month away. But, at least in my case he's not headed right back off again and we basically have things under control (one gluten and one dairy accident, though, during that month). I hope you have good other sources of support!
you are definitely not alone! The relation between acting out (mainly screaming) and physical state has been clearcut since my son was about 6 months old. He's now 2 1/2 and has been on the diet for just over a year. Jekyll and Hyde was exactly how I described his different sides to the gastroenterologist on our first visit. I am still amazed by how radically he changes when he is feeling off in general, whether it is gluten related, and in his case particularly if he has had even small amounts of any dairy product, but also if he is sick with something like the flu. He is probably reacting to the discomfort (with gluten it is severe pain), but I really think there is some other, I don't know, chemical imbalance reaction going on in the brain. I have seen the mood changes often enough now to be pretty clear that when they're food induced he doesn't have a whole lot of control over his behaviour. THe last time he had dairy by mistake and reacted with a severe and prolonged tantrum about 6 hours later, he became lucid for a few seconds at one point and said "I want to stop screaming!" It's hard to express adequately my feelings about that, but it breaks my heart thinking about what he must be going through in those moments...
Anyway, given that for us it took removing both gluten and dairy before the screaming cleared up, have either of you checked out reactions to dairy? Just a thought. Another thought is this: my husband in particular was very concerned about discipline for the apparent bad behaviour during tantrums (especially because they usually seemed either to come out of the blue or were triggered for the most trivial (in our opinion!) reasons). Our new pediatrician said "Get his health figured out first. Once he's not suffering any more, or at least not as a way of life, then you will be able to go ahead and teach him to control his behaviour, to move past instant gratification, etc etc as much as you want." With this thought we really just put all our energies (and man oh man did we need a lot!) into giving him the best diet possible and being as patient and present as we could. Support for the parents is very, very helpful during this time! Coming out on the other side and seeing the transformation in our son, I'm glad of the road we took no matter how trying it was for a while. Now I can really tell the difference between a normal tantrum (never lasts for more than 10 minutes, which is still a lot, but they're infrequent thank goodness) and a food-induced one (can last up to 2 hours), and I react to them totally differently, teaching and refusal to give in to demands for the first, holding and love for the second.
Best wishes to both of you. Your obvious caring and concern will make the difference in the long run.
I had never heard of the fever/pain link, but it would certainly fit my son's situation. Thanks for the info.
Aili - have you tried taking your daughter off dairy? With the extra details, her situation actually sounds quite different in several ways from my son's, but for what it's worth, we only saw a complete improvement once all dairy products were completely removed from his diet. That seems to be the case for a certain proportion of people with celiac disease, not just kids. Some say they can go back to dairy once their insides have had a chance to heal.
In terms of others' opinions about your care of your daughter: I can fully relate to your description, and it's kind of nice at some level to hear someone else has been there, even if I'm not GLAD you have had to go through that too. My biggest trouble, unfortunately, was with my husband who doggedly assured me that my trying to soothe the screaming rather than disciplining our son for his outbursts was going to create a monster. Without going into the breadth and width of our arguments on the subject (they were intense to say the least!), I will just say that I am very glad I stuck to my sense that he (our son!) was in extreme distress and was not acting out. To his credit, my husband recognized he was mistaken once all the screaming and irritability disappeared with the gluten- and dairy-free diet.
are you referring to stomach/intestinal pain? If so, although I have not had it myself, ever really, my young son has severe pain with ingestion of even trace amounts of gluten. The first time he ever put two words together was following a gluten accident, when he said "tummy hurt." Needless to say, that broke my heart. He literally writhes in pain and screams uncontrollably for 1-2 hours, and then the worst is over. It is very hard to watch, knowing we just have to wait it out. I am expecting that as he gets older things will either settle down a bit painwise, or he will be able to try doing things actively to distract or soothe himself. For the moment I just hold him and try to connect. With all due respect to your doctor, I think you will find that pain is not that uncommon!