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shayesmom

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shayesmom last won the day on April 27 2010

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  1. The bottom line I want to know is whether there is ANY other problem I could be having that might cause the results (detailed below) that led them to label my problem as celiac. Based on what I've read, all signs point to celiac, but I don't want it to be that!! (And I'd suspect that most of you won't have expertise to declare it possibly something else, but any direction to search would be appreciated.

    Villous atrophy confirmed by biopsy is the "gold standard" when it comes to a diagnosis of Celiac Disease. And as someone else already mentioned, the only other thing that could cause it would be dairy, soy or corn intolerance. Lack of improvement on a gluten-free diet would only point to the need to remove more foods from your diet.

    I also agree that normal Vitamin B-12 and Vitamin D levels are not a contradiction of the diagnosis. Vitamin D is mainly obtained through sunlight. Intestinal absorption has nothing to do with it. And Vitamin B-12 is readily available through meat and many other foods.

    The fact that all other tests confirm the diagnosis pretty much negates the need for further testing. There really are no "zebras" to continue looking for. Or rather, you have a positive dx of Celiac. Any other diagnosis would be IN ADDITION to Celiac.

    And I am unsure as to what you mean when you say you "don't feel sick like other people do". Exactly what prompted all of the testing? Was it screening prompted by someone else in the family being diagnosed? (In which case, a genetic predisposition would already be established). It is very rare that doctors test for Celiac without an initial visit and symptoms to indicate the tests are warranted. The diagnosis of Celiac usually takes a patient seeing 5-6 different doctors and about 9-11 YEARS of testing. You're actually one of the lucky ones.

    Celiac is a clinical chameleon. Symptoms are widely varied (200+ possible symptoms). Some people have diarrhea, others are chronically constipated. And I believe that over half do not have the GI issues at all.

    Reflux can be a symptom of celiac disease, but it can also be an indicator of other food intolerances or of too much/little stomach acid. The persistance of reflux just indicates that you need to continue investigating this portion of your symptoms outside of the celiac disease diagnosis. It by no means nullifies the diagnosis. You have Celiac Disease.

    One of the best resources that can help you in figuring out the reflux portion would probably be the Related Disorders section on this site.

    I am sorry that you are in denial. And I do understand the denial you are in. This diet is very difficult to get behind in the beginning. It will take about a year before it becomes second nature. There are many here who would love to have the positive dx you have received to reaffirm their decision to be gluten-free. It can be even harder to be on this diet when the tests don't point to the dx, but the resolution of symptoms on the diet do.

    I think that in this instance, you just need to take it a day at a time. Life without gluten is challenging...but it does get easier. And keep in mind that some folks are asymptomatic...until they get diagnosed with stage IV cancer induced by undiagnosed/uncompliant celiac disease. And then, it is often too late to do anything about it. I've yet to meet a pancake that was worth that. :)


  2. Thank you. We have changed meds and dosages several times. He's now taking Ritalin SR 40 mg in the am and a boost of regular Ritalin 10mg in the afternoon to get him through homework. He's actually doing beautifully on this combo. I just still really hate the idea of giving him drugs every day. I have some friends who have kids with Autism. They kept telling me that the need for meds would go away with the diet. I think they are full of beans now, LOL.

    Both of my boys have ADHD, and a really bad case. The good news is that the meds work for them. I guess I just need to resign myself to the fact that they will probably be on it for a long time.

    The diet has eliminated all of their tummy aches, vomiting and headaches, so in the grand scheme of things, we're all good. Thanks for your comments:)

    janie

    ADHD can often also be helped by avoiding certain chemicals (preservatives, food colorings, food additives). There also is often a problem with dairy. I've known of a few people who tried adding omegas and enzymes to the mix with really good results...including getting off the medications. For more info, you can check out this link and the subsequent supporting links. http://www.enzymestuff.com/conditionadhd.htm

    Glad to hear that things are getting better already!


  3. Considering the family history, it is likely that gluten is the culprit behind all that you've been experiencing with your children. Though they may not be thrilled with the prospect of going gluten-free, they may be surprised at how well they do on the diet. I'd definitely give it a shot.

    As a side note, I would recommend also supplementing with D-Mannose for the child that is getting frequent bladder infections. It quite often stops the infection in its tracks. Generally it takes about 10 minutes to start working. http://www.associatedcontent.com/article/3461/dmannose_the_natural_cure_for_bladder.html

    My daughter is sensitive to a lot of foods and chemicals/medications. The D-Mannose has been wonderful to have when we've dealt with bladder infections. Our doctor was seriously impressed that the bladder infection cleared up so quickly (the first infection we had him dx the infection and then went back in to make sure it was gone). And our daughter was just happy the pain went away almost immediately.


  4. Hi I want to have our son tested for other food allergies as well. Any opinions on which is the most reliable. I was considering the Elisa test (blood test). Does anyone have any ideas on the best way to test?

    If you're looking for food allergies, then yes, the most reliable thing to do is the scratch testing combined with the CapRAST. The combined result of those two tests usually are fairly accurate.

    However, if you are suspecting food intolerances, then the ELISA could be useful. But you do have to keep in mind that if there's a problem with leaky gut, the ELISA may find antibodies to certain foods simply because you're eating a lot of that item and not due to a true intolerance.

    Please be aware that these tests are not 100% accurate. There is risk for both false negatives as well as false positives. You may need to follow up with an elimination diet to get a better grasp on what you're dealing with.


  5. Maybe I'm in a mood here, but I guess I might come back with:

    Do you know how ignorant you sound right now? I doubt there's anything I can say that would help you understand, so you just worry about your health and I'll worry about mine.

    Of course that might just be my mood right now...I'm sure others have better, more civil answers. But seriously, why is it any of their business? People can be incredibly rude. When I was talking to the mother of the boy who thought it was funny to throw bread on my son's lunch (first gluten-free lunchtime experience at school) she thought it was completely ridiculous that my son referred to gluten as poison. Some people are just jerks.

    LOL! The "mood" must be catchy because my first thought was "And this affects you HOW???".

    Some people really are ignorant. And those same ignorant people have no problem stuffing their faces with non-foods (things made with petroleum, coal tar, car wax) while having the nerve to judge others who are eating real food. Items that are manufactured, processed, artifically flavored, colored, sweetened and chemically "created" are now the "normal" diet. Anything else is considered "extreme". A whole food diet? You must be crazy to deprive yourself in such a way!

    Ultimately, you have to be comfortable with yourself and with your choices. If you're feeling better and seeing positive results, than the people who care about you should rejoice for you and with you. If they don't, they have a pretty messed up view on what it is to be a caring and considerate human being.

    The problem is theirs, not yours. Don't try to justify your life. You have every right to live it as you deem fit.


  6. My son was diagnosed a year ago with Celiac Disease. Since then, both my husband and I decided to go gluten free also, to make the entire house gluten free. I was sent an article that came out of Readers Digest that says it is not safe to be on this diet, if you are not celiac. Does anyone know if this is true?

    "Fad Diet Danger - Gluten free diets are catching on across the country. But trying one may do more harm than good if you don't have Celiac disease - an autoimmune disorder in which your body's reaction to gluten, a protein found in wheat, barley and rye, damages the lining of your small intestine. In a new study from Spain, healthy adults who ate a gluten free diet for a month had a dramatic drop in protective gut bacteria and immunity boosting chemicals."

    I think that you have to take medical information like this with a grain of salt. One study is hardly conclusive and Reader's Digest is not supplying any of the details involving the study. You're basically getting their version of what the abstract is and not the methodology.

    I find it strange that the study put healthy adults on the gluten-free diet to see how it affected them. In reality, the diet is difficult to the point where no one would commit to it unless they were having serious health issues. (Does anyone else wonder if these people truly adhered to the diet? For us, that first month was one where many mistakes were made.) And I think that most have the sense to realize if the diet is making a positive difference or not. So I find the "fad diet danger" label to be suspect. Maybe I'm wrong, but it has always struck me that these articles stressing the importance of testing (in reality biopsy) and downplaying the benefits of gluten free for gluten sensitive non-Celiacs, is simply a ploy to keep people in the doctor's office and at the mercy of doctors who may or may not understand this disease. I'd much rather see an article covering the medical myths surrounding this disease so that patients could understand the pitfalls in obtaining a diagnosis.

    But that's probably just me.

    Anyway, our daughter is not officially dx'd with Celiac but her doctors are in agreement that she most likely does have it. Her reactions are extreme. We also have a gluten, dairy, soy and egg-free house. And my husband and I feel better than we did pre-diet days. I also avoid these foods outside of the home.

    I think that the previous posters are correct in their statements that a whole food diet can be much more healthful than trying to replace bad carbs with more bad carbs. From an evolutionary perspective, humans really don't need to eat a lot of grains. So I wouldn't worry too much about what Reader's Digest has to say. You are going to be much better at assessing your family's health than they are.


  7. After talking with the GI doc again, I was able to determine exactly which blood work he requested. Of the blood work that he did, her TTG was slightly high positve, and her EMA was positive. Based on what I have read, EMA is Celiac specific, and has virtually 100% accuracy. He is still saying that because the biopsy was negative, he thinks that the blood work could be "false positive" due to being too soon out of infection???? I can't wrap my brain around this, as EVERYTHING I have read has stated that there is no false positive EMA! He wants me to keep her on Gluten, and retest her blood in May. In the meantime, he says I can get the genetic test done. I am having a really hard time deciding whether or not to keep gluten in her diet, as she is soooo symptomatic. Her behavior just keeps getting worse. Her tantrums are getting much more severe. She is hitting, biting, screaming, and just insane at some instances. She is waking up screaming at night. This all on top of the increased stools, tummy aches, bloated abdomen, lack of weight gain, darkness under her eyes, thin chest and arms,constant illness, etc. She is not a miserablly ill child. She plays and has energy. She has bad moments, yes, but she is overall a playful 2 year old. I know that her doc is one of the best, but I feel like he is just as baffled as I am. It is sooo rare for the EMA to be positive, and the biopsy be so negative. He says her intestines look PERFECT! I am so stuck in this middle, maybe, diagnosis. It is really starting to drive me insane! If I put her on a gluten free diet, how long before her May blood work does she have to be back on Gluten?

    This is the scenario that is absolutely dreadful to deal with. Postive blood work and negative biopsy. What to do?

    I don't know how much you're willing to spend on a genetic test, but you can get the home kits from both University of Chicago as well as through Enterolab. The results may be the "tipping" factor in getting your GI to confirm the diagnosis without more biopsies.

    It's hard to give advice in a situation like this. For me, the most important thing was to get my daughter well. We had negative bloodwork and no biopsy. We did enlist the assistance of the pedi GI and our family doctor and monitored the changes a gluten-free diet had on a weekly basis. The results were overwhelmingly positive and we got a diagnosis of gluten enteropathy (which can be Celiac or non-Celiac but basically changes nothing in terms of treatment). There is no doubt that my daughter is extremely sensitive to gluten. And now, more and more family members are being diagnosed through bloodwork and biopsy. So I take that as my daughter being the "canary in the coal mine".

    That being said, I can tell you that in the beginnings of the diet, I naively thought that we could always put our daughter back on a gluten diet in order to confirm the disease later on in life. After seeing the difference the diet has made, I no longer think that. In truth, I think that I cried for a week when I realized I had been unwittingly poisoning my daughter with those foods. We will NOT be going back on the road to "gold standard" diagnosis unless my daughter decides it's necessary. And I really don't see that ever happening as she has horrific reactions to even a crumb of gluten.

    You need to really take an inventory of what your beliefs are as well as who you are when deciding which route to take. This is your child. And you need to KNOW that what you're doing is in her best interest. Your decision should reflect that because either way, the decisions you make now will come back to challenge you through the next few years. Know your strengths and know your weaknesses. It will all come together in the end and you'll be a better mom for it.

    Good luck!


  8. Hello Everyone!

    We saw his pediatric G.I. last week and he was very pleased with his progress. The reason for my post on here is that the G.I. mentioned during our last appointment that he will be doing annual biopsies.

    I think that the only appropriate response to this GI would be "Over my dead body". What in the world could this doctor be thinking? No wonder insurance rates are soaring! I can understand checking levels with blood tests, but there is no medical justification of doing an annual biopsy. Recovered cancer patients aren't screened with this kind of intensity.

    Not to mention that there are still doctors out there who dx celiac via biopsy, perform another biopsy 2-3 years down the road. If the villi are completely healed, they then determine the patient "cured" of Celiac Disease and tell them they can "go back to eating gluten". :blink:

    I think that the doctor needs to explain himself further and also should be reminded that you are in charge of your child's medical needs. You choose what and when medical procedures are done.


  9. If the blood test is positive, what are the chances of it being something else? I thought that if it was positive than it is definitely Celiac, but now I"m reading that they actually confirm it thru the biopsy. We have an appointment with a very good GI at the beginning of March. Our pediatrician told us to keep her off gluten for now and then see what he says about the biopsy. My only concern is that she may have other things going on to. Some of her symptoms haven't been really typical for Celiacs. For the past 1 1/2 she has had a lot

    of itching all over with no rash and certain types of citrus give her a bright red bottom, like a diaper rash almost. It always happens with apple juice, sometimes when she eats oranges. Her stool is usually light colored, which is a symptom of liver problems (as well as

    the itching). I don't know, we were actually relieved when we found out she had Celiac, but now I'm finding that a lot of Celiacs can have multiple auto immune issues...Does anyone else find this to be true?

    I agree with the other posters who have said this is a personal choice. But I do believe that a strongly positive TTG should be enough to confirm the diagnosis.

    I do not agree with the new and growing trend of putting a new patient on a gluten-free diet after positive bloodwork but before a biopsy. That is just begging for a false negative biopsy result and the practice should be discontinued. Please ask your GI to talk to the pediatrician about this as it prolongs the suffering of many children by skewing test results. Patients should be made aware of the options and requirements of the tests so that they can make a choice as to how they want to proceed.

    That being said, we did not go to biopsy with my daughter. I don't really regret it. There have been times when I've thought it would help out with the school (in terms of "official" dx), but in all honesty, it hasn't been required. Our doctor writes up any notes we need as he saw our daughter throughout this process. The only "problem" we've run into is with an aunt who cannot bring herself to acknowledge that this is a real disease. And I really don't care that she has issues with what we're doing. It is working for my daughter and that matters most to me. My daughter's reactions to gluten are very extreme and she's very sensitive to miniscule exposures. There are no doubts for us.

    I totally can relate to you wanting to just heal your daughter. The stress of seeing your child suffer while running all of these tests is just incredible. And not following through on an answer doesn't feel right when you're looking at prolonging suffering for months for a test that may, or may not confirm.

    Good luck with your decision. It is a tough one to grapple with in the beginning of this journey. Just stay true to yourself and it will all work out best.


  10. Hi, I have a son that has gluten issues. He gets severe stomache pains along with other symptoms after a day at school if he doesn't wash his hands well before he eats. So i'm wondering what others do when trying to keep ones homes gluten free regarding cleaning methods and how they deal with having guests over to their homes. After having friends over I usually clean up... ALOT. I'm feel like at times I may be over doing it or over thinking the whole thing, but at the same time I feel that it logically makes sense to clean and wipe things down the way I do. Any thoughts?

    My daughter is super-sensitive to gluten and also very sensitive to dairy, soy and egg. It became apparent to us very early on that we couldn't have a "mixed" household. And so, we do not allow offending foods in the home. Period. The only exception we have made is with coffee creamer and regular milk for guests.

    In which case, wiping things down is just a regular household chore, not one aimed at decontaminating things which could bring on a reaction.

    It has taken some time to develop recipes and menus that cater to the diet as well as being guest-friendly. But so far, it hasn't been a problem. In fact, I've had several people ask for recipes and they've also responded with a bit of shock at the fact that the food offered was "normal". ;) We also recently had a large family get-together where everything offered was safe for my daughter. We had tons of food and no one even realized they were eating from an allergen-friendly menu. We got rave reviews.

    I don't think you're "overdoing" things by cleaning up after having offending foods in the house. If your child got CC'd after such an event and you hadn't put forth the effort to clean up, you'd kick yourself for not having done better. But it can be tiring putting forth that effort before AND after a party. So it may interest you to find some safer alternatives so that you can relax and have fun a bit too.


  11. I respectfully disagree with Wolicki. If a child needs five minutes to prepare food, I think that is reasonable. No one wants a cold meal every day. However, since the teacher doesn't have a problem with it the other three days, for two days she could have meals that do not need prep, so as not to make a big stink when they are trying to work with you. Just my thoughts, of course.

    But you will have to fight this as she gets older. She will have to fight it, because people don't get it. Good luck.

    If you're going to meet with the principal and teacher about this, you may as well start proceedings for a 504. That way, you can agree to certain standards and the documentation will be there if a teacher decides to deviate.

    I do agree with others that thermoses and cooler packs work well for lunches. I send a hot lunch in for my daughter 3+ times a week (the rest are cold). I just boil some water in a teapot while preparing her lunch, pour the hot water into a metal thermos (the plastic ones suck). Then heat the food in the microwave, dump the water out and dry, then add the hot meal.

    However, with that being said, I still think that this issue needs to be brought forth in the schools. Hot meals are provided free or at a reduced cost for those with financial difficulties. In all honesty, I don't see why a child with a medically diagnosed food issue should not have a hot lunch available to them as well. It is a form of discrimination because your child is not allowed equal access to services provided at the school.

    That being said, it seems simpler to allow access to a microwave than to fund the cost of providing an allergen-friendly meal.


  12. Do not trust them.

    This is well worth repeating.

    The only thing that will get them to take this more seriously is the constant reminder that their current attitudes and actions are noticed and deemed not trustworthy. Unfortunately some people just don't "get it" simply because they do not want to. And these same people will not take it seriously unless they repeatedly see just how seriously you take it. So it may mean staying away for a while or seriously limiting contact. If they care enough, they'll soon realize that they are jeopardizing relationships with their nonchalance and temper their initial impulse to roll those eyes. When that happens, be sure to praise them for their compassion to reinforce the "concession" they have supposedly made.

    It takes a while. But it is imperative that you set very clear boundaries. They may not like it at first, but that's the only way you'll be able to eventually have a "normal" visit and not resent them in the long run.


  13. Yeah, I have a dog and I usually feed her. But you know what I wonder about, I worry about my mom giving my daughter cheerios. Or cutting her pizza for her (if I am not there). I guess if you husband had a reaction just from feeding a dog then that should answer my question...lol were new to this. As a matter of fact I am taking my daughter to the doctor today bec she stays sick (her immune system stinks), and some days her belly looks bloated and she has a lot of skin issues ( I also have skin issues and assumed she just inheareted it from me). But I have been tested and came back negetive but I am still gonna have her checked. She is only 1, I would hate for her to have this already.

    Jess

    Jess,

    Just so you know, you will need to be tested every 3 years or so unless you've had the genetic tests done which show you don't have the genes pre-disposing Celiac. The simple fact is, this disease can be triggered at any point in life. And the tests aren't 100% definitive. They can rule Celiac in, but they can't rule it out. This goes double for tests done on young children. Many of them come back with false negative results. My daughter was one of those. We took her off gluten anyway and she has thrived since.

    If it's possible, try to pack gluten-free snacks and meals for the times your daughter is at your mom's. Young children are built to explore their world by putting everything in their mouth. And this is especially difficult in regards to cross-contaminating a Celiac. My own daughter has gotten sick at both my sister's and my sister-in-laws home because of sharing toys with their kids. It's a very difficult thing to control unless everyone makes it a habit to wash their hands after each meal and snack.

    I agree with all of the posts so far on cross-contamination issues. It may seem over the top, but the fact is, all these minor things can delay a Celiac from improving. Also, I don't know if your mom has a computer at her desk, but if she shares any office equipment, that also may be a source of cross-contamination. She may want to keep some wet wipes at her desk to save some trips on hand washing. I've been cross-contaminated twice by sharing a touch screen register at work. People are always eating and playing on the computer! :ph34r:

    Cosmetics and hairspray are two other culprits which should be looked into. Dish soap and laundry detergent, spray starch (if your mom irons her work clothes) as well.

    It takes a while, but eventually you cover all the bases and things normalize. Hopefully she'll recovery fully soon.


  14. Do you have any more info on this, or a link?

    Here's a link which outlines the bills in question: http://food-allergies.suite101.com/article.cfm/food_allergy_and_anaphylaxis_management_act

    From what I am reading, the bills still are not out of Committee so they haven't been discussed on the floor. Probably would be a good idea for everyone here to contact their local Congressman to push this along.


  15. We do not have the option of growing a garden.

    I live in a small town as well. We do grow some tomatoes and peppers. However, there are a couple of garden centers in the area that let you pick fruit as is available throughout the year. We can pick our own strawberries, blueberries, raspberries, blackberries, apples, peaches and cherries. It takes little time (about 15 minutes per trip) and we have plenty of fruit to eat and or freeze. Some places also have veggies available to buy at a better price than the supermarket. Some towns even have community gardens where all you need to do is show up to pick the produce when it is ready for harvest. My sister does this and the cost is at about 1/3 of what she'd pay at the store.


  16. My boyfriend is on a gluten and dairy free diet and is also trying to avoid soy. We have a limited income. What can I feed him that he can take to work in his lunchbox?

    He was doing gluten free boxed hamburger and tuna mixes, but discovered they are not dairy free. We have had difficulty finding frozen veggies that are not cross-contaminated. We live in a small town that at least has a health food section in the grocery store. We do not have the option of growing a garden.

    I think you'll get the most bang for your buck by doing two things. One is to cook large dinners. So for example, if you're making meatloaf, make two. Freeze extra portions or save it for lunches. The second is to look at buying your specialty foods on-line or do a few field trips to see who has the best prices on the special products you do use. I have 3 stores which I frequent, but none are closer than 30 minutes from my house. So I budget funds for each store as well as trips. One store sells specialty flours in bulk. So I can usually go once every 4 months and spend about $60 on average (this budget also allows me some room to buy a few new products). The other stores I try to limit to once a month or every other month. I've also found that several items we like are less expensive buying on-line. So once again, I place orders about 3-4 times per year.

    For lunch, I have found that variety keeps me the most interested. So if I make a tuna spread, I like it with crackers to dip into it (we can tolerate small amounts of soy and so the Nut Thin Smokehouse crackers are our preference with tuna). Perhaps some tomato slices and black olives on the side.

    I do take salads to work in the summer adding all sorts of veggies and fruit into it. This is a great way to use small amounts of leftover steak or chicken. If avocados are on sale, I bring a whole one along and add it to my salad on my break. I use the Cindy's Kitchen salad dressings which do not contain soybean oil. Or you can make your own vinaigrettes. Two of my co-workers actually begged me to bring extra for them. The key to keeping a salad fresh until lunch is a cooler pack and adding a dry paper towel in the container to absorb water and keep the lettuce crisp.

    All leftovers are fair game in my house. Cabbage rolls, chili, meatloaf and meatballs with spaghetti are all easy to pack. My daughter likes leftover mashed potatoes and gravy with chicken or pork roast in her thermos. Chicken wings, spare ribs and even BBQ pulled pork is also good. And some deli meats are okay. My daughter likes me to wrap them around a thin slice of pickle (her friends like this as well. And sometimes I'll mix chopped cucumber, tomato and a safe mayo and wrap them with the meat and then a large slice of romaine or leaf lettuce for a wrap. And soups are always a favorite. It's easy to make a pot of chicken or vegetable beef soup and it's well appreciated in the colder months. Tacos also are an option. I pack the seasoned meat in the thermos and assemble them at lunch.

    For sides, I'll pack apple wedges and sunbutter to dip them in. Veggie chips or fresh veggies with hummus.

    The point being....a little bit of several things keeps lunch interesting and enjoyable. We are also egg-free, so you have more options in terms of adding hard-boiled eggs (NOT eyes! lol!!). We also buy Dr. Oetker's pudding mixes and use rice milk in them instead of milk to make a dessert. Or I'll occasionally bake cookies or mini-cupcakes. I like mini muffin pans because they stretch the expensive mixes further while limiting the intake of sweets. It also gives me the option of making banana and zucchini bread in a more portable size. Not to mention it freezes well and saves on space in the freezer.

    Hope this has helped some. Good luck!


  17. My 18 month old son has had diarrhea for about a month, with maybe one regular BM a week.

    He's always had some loose stools which the pediatrician told us was probably normal up until now. Now she's bringing up celiac (which is terrifying me). Does it sound like celiac to you parents out there:

    Things that support:

    - Semi to watery stools -95% of time

    - Dry skin on back of calves (very minimal and no where else)

    - More tired lately, lays on ground to play

    Things that seem not to support:

    - No abdominal pain (that we can tell for an 18 month old)

    - Very interested in eating (hard to get him not to eat)

    - 90th percentile in both height and weight

    - "Chuggs down" his milk or juice as soon as you give it to him (??? good or bad??)

    We've been on a gluten free diet, for about 4 days now with only a slight change in BMs (first constipated, then loose again, now slightly more solid). How long should it take to see an effect? And must my kitchen be completely crumb free?

    What tests should we ask for? My doctor is very into the "wait and see" approach but I need to know and start to change things. The worrying is killing me.

    Sorry for the rambling, any advice is appreciated.

    The first child I met with an "official" (biopsy-proven) diagnosis of Celiac was in the 98th percentile for weight and height. So I wouldn't put too much stock in the growth chart right now.

    Crankiness can be another symptom. With my daughter, she was good as gold in the morning, but come late afternoon/early evening, it seemed that it took little to set her off crying. This all changed once on a gluten-free diet.

    Dry skin can be a sign of Celiac or a food allergy....probably because it can involve malabsorption issues.

    I'd ask for a CAPRAST test to rule out allergies (even mild) to dairy and eggs. If you want a confirmation of Celiac, then you need to stop playing around with the gluten-free diet until the tests are complete. Being gluten-free will jeopardize your chances of getting an accurate test result. So if you're in doubt....get the full Celiac panel run prior to going on the diet. I don't say this to be negative or condescending. It's just that I am fully aware of pediatricians who put children on a gluten-free diet several months before then testing for celiac disease. It's an exercise in futility and extremely frustrating if you're the parent being led down this road. The pediatric gastroenterologist will only put your child back on a gluten diet (possibly for several more months) and it prolongs the diagnostic process significantly. And then there's always some random doctor who will suggest that two weeks on a gluten diet will be enough to initiate damage detectable by tests (NOT!).

    Please, if you're the type of parent who NEEDS bonified documentation of Celiac, push for the testing now and stay on a regular diet. If you can handle the doubt medical professionals will throw at you in the future (as you won't have an official diagnosis) and you are confident in the results you physically observe....then you may want to stick with the diet and go with either gene testing or Enterolab.

    Having said that, the test results (blood and even biopsy) tend to be highly inaccurate in children anyways. So I'd highly recommend going on the diet AFTER the tests. I personally feel that response to the diet is the best indicator of whether or not there is a problem. At least as far as symptomatic cases go. There also are people who are completely asymptomatic and therefore blood panels and biopsies are then a more accurate indicator.

    The method of testing is a personal choice. Just be sure that you don't let any doctor mislead you if you are seeking definitive answers.

    HTH


  18. I like your two modes. I was also a teacher and tried to see it through her eyes. We decided that she, as my daughter put it, 'just doesn't get it.' The day after Thanksgiving she asked if it was ok to give my daughter chocolate that she bought for the class even though it said 'that it may contain gluten' on the label. I told her it wasn't and reminded her that the school does not allow food sharing or candy. She said, "but I don't want her to look different than the other kids. How about I give it to her and then she doesn't eat it. She can give it to you later?" I think this teacher is having all sorts of trouble with making sensible decisions and I am not the only dissatisfied parent. We have a meeting with the head of the school next week. Wish me luck.

    Wow. Not only is she not "getting" it, she apparently doesn't want to try either. Wow. It must be difficult going through life with such a rigidly set perspective.

    It's also interesting to see how she justifies keeping her world in order. So much for "independent thinking" on her part. I suppose that there just isn't an acceptable alternative in her view? Is it that she just can't be bothered with all of this or she's of a generation who thinks that Celiac is really a bogus disease because food cannot possibly affect people so negatively? (I've met these kinds of people and they don't "get it" because they don't want to get it).

    I do wish you luck with the meeting. I hope that you gently remind the educators there that they WILL be seeing more and more Celiac students in the near future. As painful as it may be, they'd be better served addressing this issue now than waiting for future legal action from families that will not be so tolerant when their child's rights are repeatedly violated.

    And if it helps, there was a bill moving through the House and Senate dealing with food allergies/intolerances. If the bill passes, standards will be set in how to deal with food allergies/intolerance in schools and those schools who meet the standards would be eligible for extra federal funding. At that point, this teacher's continued resistance to accommodate a disability would negatively affect her school's bottom line.

    Truly, good luck with this and keep us posted on how it goes.


  19. :angry:

    So my brother & SIL decide that for Xmas they are taking our family of 5 out for supper (we're all away on holiday). So we go to a place called the Organ Spot - pizza, pasta, subs, small salad bar that didn't look safe. I googled it a couple of days before and wasn't happy at the get go. Of all the places to go, why there ?!?!?!??!

    I really tried you know - I brought my lunch bag and watched (and smelled) 6 people eat pizza and then ice cream cones. I didn't even eat what I brought because, well, once you smell that pizza...

    So I was a stick in the mud and quite unhappy when we left (we spent almost 2 hours there). My DH is grumpy with me, thinks I shoulda sucked it up. I'm grumpy because I don't think it was fair to me to go there. The kids had a good time & enjoyed the pizza.

    Bottom line - I'm not doing that again. If there is a next time, they can take the kids, I don't care if anyone thinks I'm being a spoil sport...it really sucked. I don't think I'm over reacting - I wouldn't take a vegetarian to a steakhouse with no other options. I'm probably doubly grumpy because I've been sick a lot this trip & am almost afraid to eat anything anymore. Gosh...how many celiacs lose weight over Xmas !?!??!?!

    My sister-in-law presents these types of situations all of the time. It makes me absolutely crazy. Only once did she offer to go to a restaurant that had a gluten-free menu. And even then, when we all were looking for an appetizer to share, it was imperative that she got one with gluten. My dh tried to subtly hint that perhaps it would be better to get a gluten-free option (there were 3) to share. But NO...she was adamant that she wanted her favorite appetizer. LOL. (So it's almost comical when she insinuates that my diet is somehow an inconvenience...as she never lets herself be inconvenienced).

    My daughter is 10 times more sensitive than I am. We're talking severe diarrhea, a 10 hour migraine and vomitting for hours on end....to trace amounts of gluten. My SIL has seen a bad reaction (my dd got CC'd at her house). And yet, each time she's in town, she insists that we go to some gluten-infested, cross-contaminated nightmare (like Chuckee Cheese on steroids) because in her mind, it will be "fun" for the kids. Ummmm...no, it won't be fun for my kid. I'll be damned if I'm going to drive 2 hours to spend another 2 hours and $75 in a place that will inevitably make my kid sick for the next 3 days.

    So lately, I've just been putting my foot down and not going to these assinine destinations. I start by saying it's probably not a good idea. And then I offer other suggestions. If my sil pushes harder, then I tell her that perhaps she and her family should go and enjoy themselves and we can go somewhere else. We can always hook up afterwards. That way, she won't feel cheated out of her preference and I won't resent her insensitive and somewhat narcissistic perspective.

    And yes, I really do consider such attitude to be insensitive. When one invites others out to dinner, it is entirely appropriate to equally consider their preferences. This goes double if the person has dietary restrictions. It sounds like the other "adults" in the party need to spend some time re-evaluating what exactly is important in life. And one always should do a bit of introspection prior to calling others names...such as a "stick in the mud" or "grumpy". If they were faced with the same situation, I'd be willing to be that the same terms could easily be applied by those with a sated appetite...and they'd be just as insulting and selfish in perspective.


  20. its been a long day...managed a good lunch and dinner..then was able to freeze and process other side dishes for the up coming weekend...we r taking the kids to a fair tomorrow...i thought it would be smart to pack some snacks and possibly a light meal...hubby thinks its a bad idea...he thinks by planning every meal like this...i am cornering my kids and robbing them of the true experience..like what is he thinking...the kids have special diets and i don't want them to feel deprived or to contend with if any or limited choices...but he thinks i am all nutty...he gave me an hours worth of "stop controlling everything"... i am so mad...am i being compeletly insane.......i am so hurt...

    It's interesting that your husband doesn't see the other side of the same argument. By hanging on to his concept of what a "true experience" is....he's depriving his children of the same thing he supposedly values. In reality, the "true experience" is whatever you make of it. I find that a "fly by the seat of your pants" approach actually takes away from the experience by adding stress to the outing.....there's nothing like being hungry and having no guaranteed safe food options available to really put you in a position to make bad decisions and to be really, really sick. Why is it so hard to enjoy a family picnic together while at the fair? If it were me, I'd be looking for some fun new recipes to pack for the event that enhances the festivity of going to the fair. And I think I'd rather focus on the events and atmosphere...and the concept of going out....moreso than hanging onto the mirage that going to this place will unprepared will somehow make the "problem" go away for a few hours.

    My husband and I have made it a point to pack a special picnic lunch and snacks (plenty of them) whenever we go out to fairs, the zoo, amusement parks, etc.. If we find gluten-free options, then we partake of them. If not, then we enjoy our lunch together and focus on why we're there....to enjoy whatever the site has to offer. I guess we've found that in reality, this lifestyle can intensify the experience. Probably because instead of focusing on all the crap being peddled and sold....we really focus on what there is to do and see.

    This issue isn't about control. It's about perspective. He needs to be made aware of this quickly. Because of his refusal to acknowledge this reality, he will take a piece of his children's happiness away each and every time you go out. What kid wants to go out all day with two parents who are bickering? And how does that add to their "experience"?

    I can understand his desire for "normalcy". However, he's projecting his own vision of normalcy onto his family. The kids will develop their own sense of normalcy given the circumstances they grow up in. All anyone can do is do the best they can to make it the best experience possible. And let go of pre-conceived notions of how things "need" to happen.


  21. I can't answer as to what more you need to ask in terms of the tests (besides asking for the printout of the lab results). But I have to scratch my head a bit on the "barely positive" answer you've already received. Is that like being "barely pregnant"? ;)

    I guess that I interpret such results as the disease has been caught early....before a lot of damage has been incurred. And I have to question any doctor who would look at those results and then state that they "aren't sure that's the way to go" as far as beginning a gluten-free diet. The diet cannot harm your child. Not adhering to it when tests are indicating a problem....well that, to me, is ignoring the elephant that's trying to squeeze its way into the room. Does the elephant really have to be already inside the room before it will be recognized? What if it stays in the corner? Do we ignore it then as well?

    You may want to push the doctor into giving his/her reasons why this "isn't the way to go". What else could these test results indicate? If there could be another health issue at work, then what needs to be done to rule it out or in? Or is this a canned answer given to everyone who tests positive prior to a biopsy being performed to further confirm? Is it a standard CYA response?

    I think you may be dealing more with procedural policy as opposed to diagnosis. Asking the doctor why he/she is hesitant to diagnose will probably yield more insight as to what the tests are truly indicating. HTH


  22. Thanks - I couldn't have said it better myself and when she brings it up again, I will say that. I think my daughter rocks too. I am very impressed with her ability to cope with this. It's not easy when they bring out the pizza and cookies at every kids social gathering.

    You know, I've been thinking about your situation most of the day. And I thought of one more thing you could say to this woman. "Do you think she'll have trouble being accepted into college if it's discovered that she doesn't bake well with others?" ;)

    Try your best to keep your cool. We all know that isn't easy at times....but it is necessary because certain parts of the situation aren't going to go away. You do need to find ways to work with your child's teachers. And you also need to ensure your daughter's safety while in school. Safety should be the priority...and a good teacher will be on board with that.


  23. Those are all really good suggestions and thank you! I'm sure there are a lot of things I'll ask for that won't happen, but this opportunity doesn't come around very often.

    I know a salad bar is in the plans, so prepackaged dressing and croutons are definitely something that I will note.

    Even having one meal a week or some prepackaged safe allergy meals that are available would be a start. Simply have someone be AWARE that there is a demand here would be a good thing.

    I think I am going to start by finding a good way to survey and identify families who are interested in allergy-friendly options at school.

    I know that 20 years ago, my high school introduced a salad bar. Unaware of celiac disease at the time, I now look back and find it ingenious that our school purchased two units. A small, open and cooled (ice was kept under a very large bowl of lettuce) unit for the lettuce and a normal "bar" for all of the toppings. The toppings in the bar unit could easily be segregated and separated to cut down on cross-contamination issues (like cheese, cottage cheese, puddings, hard-boiled eggs, etc.).

    Pre-packaged allergen-friendly items should be something schools seriously look into. Every school has an emergency preparedness plan in case of emergencies (school lockdown, inclement weather, natural disasters). They usually have a backup school or location that they plan to go to and they also need to feed the children in the interim. Just what do they plan to do with allergic children? Let them starve? Fruit cups, certain canned meats, applesauce....heck, even some of those rice noodle bowls (minus the oil packet for the soy-allergic) would be an option. I find those bowls at some stores for 99 cents a piece. The point being....there should be something. In the least, they should ask the parents of allergic children to provide items for them to stock in case of an emergency situation at the beginning of each school year. I'd say a minimum of 3 emergency meals per child and have the parents label the items to correspond with the student/class. This would also be helpful in case something ever happens to the lunch of an allergic child. We had a situation where another student contaminated my daughter's lunch through thoughtless behavior. She didn't think any gluten got into her food, but discovered later (through a horrific reaction), that her lunch had been CC'd. :angry: It's simply unacceptable to not offer a backup plan for these scenarios.


  24. Hello wonderful parents of Celiac and gluten-intolerant children!

    The principal at my daughters grade 6-12 school is working rigorously to secure a new food service provider for her school's lunch program. He's also looking at making drastic changes to the eating environment to encourage high schoolers to stay on campus during the lunch break. My daughter is a 7th grader and brings her lunch to school every day and refuses to eat in the lunch room because it is so filthy with crumbs.

    I will be participating on the parent committee for submitting the RFP to different food service providers as well as the eating improvement plan. This is really great because it's a ground-up effort to improve food service, and I am very passionate about making it possible for kids with food allergies and intolerances (probably the top 8, including gluten--not just wheat) to eat safely at school--whether that means menu choices or simply a safe environment--is yet to be seen.

    So, I am asking YOU parents, what would make your child's school lunch program ideal as a food allergy/intolerance sufferer? Really just a laundry/wish list of what you think would actually work for your child in terms of school lunches would be ideal.

    Thanks in advance for your help! I'll keep you updated as I know more.

    I think that you have a terrific opportunity to make a HUGE difference here! I'm already looking forward to hearing how this works out.

    As far as ideas go for allergic kids, I think one thing that would help immensely is having fresh, whole foods available. This can often be worked through the Farm to School program. http://www.farmtoschool.org/ This is where local farms can become providers of fresh produce, meat (and dairy) for a school system. This is a healthier option for ALL children at the school.

    Many schools have salad bars which easily could be a "safe" option just by switching to pre-packaged croutons and having the dairy/egg options in a separate section or a separate place entirely. Once again, pre-packaged salad dressing, or more attention paid to allergen-friendly products could be applied to include most (if not all) students.

    I know that for younger, peanut-allergic kids, there often is a peanut-free table. I think this could also be done for gluten and other issues. I know that with my daughter, 1/4 of a lunch table is designated as "hers". Each week, she gets to pick 3 friends who can sit with her at that area. That way, she can pick children who understand she cannot share and who aren't prone to throwing their food around and acting up. This also makes it easier on the cafeteria staff in terms of knowing which table needs cleaned first....and most thoroughly. This has helped tremendously in avoiding CC and only came about after a horrific reaction caused by one boy who thought it was cute to hit other kids over the head with his sandwich at my dd's table. :angry:

    At a high school level, I think students could be encouraged to start being responsible for themselves. If someone decides it's humorous to make a huge mess, than it should be equally as humorous to clean it up afterward. If they miss class due to clean-up, the work could be made up in detention along with required "extra credit" homework to help offset wasted time. I think the cafeteria staff would benefit from a more smoothly run operation and then could be able to do a few things to help with allergic students.

    I don't think it would be financially possible to have allergen-free lunches provided every day (though here's to hoping). But I do think that with a bit of preliminary research, that it really could be an option at least once a week, perhaps more. My guess would be that Mondays would be a viable allergen-free day (as the kitchen could be cleaned thoroughly on Friday and would be ready to go for the beginning of the week). This also would be the best day in regards to the lunch room being at its cleanest.

    Besides that, just looking at some of the standard food staples and seeing if there's an economical alternate that could be used. For example, stocking canola instead of peanut or soybean oil. Then having a designated fryer for french fries (if your school serves them) or using fries that are allergen-free to be baked for the kids.

    Our pre-k didn't like any fresh produce in the school because of spoilage. Boy...what I could have done with those fruits and veggies....and a juicer! lol! Imagine if a "juice bar" were available...one that finished off any "extra" produce each week. It's a pipe dream, but I would wager it would do well among most students.

    I've got to stop myself before I get carried away any further! :rolleyes:


  25. I don't see that as caving in -- imagine if all the food issue children bail on cooking. The teacher would quickly get the desired message of "cooking is not practical in this setting" and stop.

    Actually, I do think there is a lot of truth in this statement. If all the food allergic kids bailed on all of the food-based activities....things would definitely change.

    Having been in your shoes through 2 years of pre-school, I would opt to bake at home with my child. We tried to do the gluten-free alternatives the first year and my daughter was the one who suffered most from it. We skipped all of those lovely activities the following year and we got through pretty well. Of course, the teacher tried to take credit for things going more "smoothly" (as far as reactions) the second year and I had to laugh. I ended up keeping my daughter home for at least 7 full classdays (she only went 3 days per week). We missed most of December and February in order to avoid the CC issues! Then again....it did go much more smoothly for us and we were able to enjoy the holiday breaks.....