Celiac Disease

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14 year old with Celiac has missed a lot of school

March 2013

My 14 year old son has been very sick from Celiac and missed a lot of school. For the 3 months left at BUSD 8th grade, Home Hospital or Independent Study? He is anemic, still nauseous, weak! Before this hit, he was very athletic.. can't do much & faints now. I need advice! I am still hoping that he can enroll as usual at BHS... Is that realistic? His Dr just asked me if he was back in school? After the emergency hospital IV rescue? I may need to change health providers? I am freaked out.

Our daughter was diagnosed with celiac disease in 9th grade after missing lots of school because of after-lunch stomach aches. She chose independent study (she had been asking to switch before the diagnosis), and finished HS there. It worked well for her academically, although she seemed somewhat socially isolated to us, especially in 12th grade. She did take classes at Berkeley High every year, and participated in some activities there, although again, those tapered off later in high school. She has been pretty good about keeping to a gluten-free diet, though she did continue to have stomach aches with no immediately apparent cause and was on medication on and off. She is apparently much happier in college than she was in high school, and stomach aches are no longer a problem.

We had a couple of nutrition lectures from dieticians, and she saw a pediatric gastroenterologist, now retired, who originally diagnosed her disease but didn't provide us with much of use later on except recommendations for vitamins and stomach ache medication. I guess we didn't really need much - diet is all, and teenagers aren't always willing to do what's best for themselves. As for our reaction to the whole thing, I remember being very upset when we first got the diagnosis, thinking that all our lives would be much more difficult, but providing food hasn't been a problem. She'll have to eat risotto instead of pasta if she ever goes to Italy, which she plans to do, but I'm confident she will manage. And she can't drink beer, which for a college student could be a good thing. formerly worried parent

I am so sorry to hear about the challenges you and your child are experiencing!!! My now 18 year old daughter was diagnosed with celiac disease when she was a toddler - also after a prolonged illness and hospitalization. In addition, she missed a significant amount of school in 8th, 9th, and 12th grade (almost the entire first semester!) due to another chronic g.i. condition. Good luck! kn
Dont worry!

As a Celiacian myself, I can relate to how scary it is in the beginning, but, thank goodness your son was diagnosed! That's the really hard part. A few years ago, the hardest part was actually finding food, but now, there are SO many options.

''Living Without'' is a terrific magazine for those with any sort of food allergies, and is a great resource. They also have weekly tips, and e-books of recipes you can download. www.livingwithout.com Almost all the stores now carry some gluten free products, and the US Gov is hard at work to standardize what ''gluten-free'' actually mean. Avoid, at all costs, wheat, oats, rye or barley containing products. So, rice, corn and potatoes, buckwheat are fine. But dont be fooled. READ the labels. they often say corn something, but have wheat. Spelt, Kamut, Teff are ancient ancestors of wheat. I can't eat them, but some folks can.

Even Safeway has gluten free pasta, and gluten-free soy sauce(San-J brand. Gf breads are often in the freezer. You need to keep them in freezer/fridge at home so they don't dry out. I ask about everything in everything when i go out to eat. And return to places where i can eat.

There is a bakery in Oakland, Mariposa, that is totally dedicated to gf food.

Its SO much better and easier than even two years ago.

Keep breathing. Teach him to read the labels, and get ready to make all your sweet treats at home. Its not the end of the world aluckymom

While I can't give you advice about BHS, I can give you plenty of counsel on celiac. My daughter was diagnosed 2 years ago and I have lots of wisdom I'd be happy to share. The first thing you should know is that he will get better. I'm assuming your doctor took him off dairy as well. His intestine needs some time to heal. Sign him up for celiac camp this summer so he can meet peers who've been living with celiac and thriving. Write me off-line and I will help guide you through this. While it's a total game changer for your family, you'll be pleased to know that there are lots of us out there who's families have survived and thrived going gluten free. Many people helped us when we got our diagnosis and I'm happy to pay it foward. G Free Mom

Celiac dietitian

Feb 2013

I just found out that I have Celiac's Disease (based on blood tests) and need a recommendation for a dietitian or other professional to help with the diet. If you have Celiac's Disease, whom do recommend? Also, I will have my child tested next and could use a recommendation for a pediatric GI specializing in Celiac's. Thank you!

I highly recommend Nori Hudson. Nori is a nutritional educator. She is so knowledgable it amazes me. Nori sees private clients and also teaches at the Bowman College of Nutrition. Her number is: 847-3197, nori [at] radiant-vitality.com I'd also like to suggest that you check out the Paleo lifestyle. There are many websites that will give you great info. Robb Wolf wrote a book called ''The Paleo Solution''. He grew up not knowing he had Celiac disease and being sicker and sicker untill his college years when he discovered Paleo and finally was directed to being tested for Celiac. www.robbwolf.com I don't have Celiac, but am very sensitive to gluten and have been gluten free for 7 years. It wasn't till I gave up grains completely (plus soy and dairy and sugar) that I REALLY started to heal my gut. Good luck and best to you. June K

Nutritionist for teen with Celiac Disease

Nov 2011

My teenage daughter was diagnosed with celiac disease a few years ago and has been seeing a pediatric gastroenterologist about once a year. Even on a gluten-free diet she has frequent stomach aches and may have acid reflux. She is often tired and tends to get depressed. The doctor recommended vitamin D and omeprazole and a variety of tests related to GI symptoms and general nutrition, but we haven't had any other kinds of tests done at this time. I wonder if a nutritionist might be able to help her feel better physically and thus feel better emotionally. I checked the website, and didn't find any useful recommendations. worried mother

Dear Mom, I'm so sorry to hear about your daughter. Having many food allergies myself, I know what a frustrating puzzle it can be to figure these things out.

I highly recommend a few people.... Nori Hudson is a ''nutritional educator and consultant''. She KNOWS HER STUFF!!! She can recommend specific tests for your daughter and will ask a series of leading questions to give her the info she needs to help your daughter. Her number is: 510-847-3197. E-mail is: nori [at] radiant-vitality.com

Secondly(but no less fabulous) is Anasuya Basil, also a nutritional consultant and educator. I've taken classes and done cleanses w/ Anasuya (in groups). I've also had private consults with her. She is wonderful and has helped me so much over the years. Both women are amazing. Anasuya's number is: 510-848-8439 Her e-mail is anasuya [at] mybodywisdom.net

I also recommend Dr. Charlie Prins, DC. Charlie is a chiropractor who uses applied kinesiology (muscle testing) to find out what's going on in the system. He uses homeopathy, supplements and some herbs to treat. Nori and Charlie often consult and refer to each other. It might be worth seeing both. 510-526-6243.

Nori is in North Berkeley, Anasuya is in El Cerrito, Charlie is in Albany. Good luck, I hope this helps anon

Hi, I wonder if your daughter might benefit from seeing a digestive health specialist? My chiropractor also has this certification and sees me for acid reflux and constipation issues. I know she works a lot with psoriasis & irritable bowel issues. She has helped me tremendously by changing my diet based on how my body processes my foods after i've eaten. I take enzymes to help with digestion and feel the best i have in years! At least if you call and talk with her, she might be a source of information for you! Dr. Jennifer Lanett in Berkeley 510-644-4414. sara

Family members with Celiac coming to dinner

Sept 2010

My sister (age 40) and her 8 yr old daughter were diagnosed with celiac disease a few years ago. I often host big (20+) family gatherings at my house. Initially I tried to make the entire meal gluten free but sometimes it is hard to do and some meals (i.e. thanksgiving) just are not the same without some flour or what (think rolls, pie) My question to you is this: am I required to make a gluten free meal every time they come over? or should I ask them to bring their own? I have at times made two meals-the main one and then something gluten free for them. However I felt my efforts were not appreciated and it was a lot of work (that is a second story -save for different post!) If anyone out there has a close family member with similar diagnoses and has advice please share. thanks! gluten free or not gluten free

I think you have been very generous... a gluten-free Thanksgiving? As one of your non-celiac-disease guests, I would have been dismayed. So I would suggest a compromise. Make a dish or two and appetizers that all can enjoy, and then ask them to bring a dish or two to make sure that they will have something they know they will enjoy. And they can bring enough to share with all, so that the others (including you) will get new ideas of what to prepare for them. I think the same should hold true for vegan guests or others who have special dietary needs/requirements. inclusive but not a martyr
I try to make it mostly gluten free. E.g. corn tamales, not spaghetti. For Thanksgiving, it's easy, potatoes, turkey, salad. My sister will bring stuff like potato rolls and gluten free dessert and ice cream works too. But she is fine if we have cake or wheat rolls etc. So it's a semi-potluck with main course and most sides by whoever is hosting. So maybe that would be the way to go---ask her to bring gluten-free alternatives, but make the majority of the meal gluten free.

We did a gluten-free snack rule for our soccer team. It was much sadder for one child not to get to participate in snack, than it was burdensome for parents to bring fresh fruit, popcorn, cheese sticks, yogurt etc. anon

Hi - One sister & I have celiac. My mom / other sister do not. what I would appreciate:

My mom just can't get straight what I can eat / can't. Sometimes she'll make something ''sure'' that I can eat it, but one of the ingredients she puts in has ''wheat flour'' clearly on the label (ie she put a can of soup that had wheat flour into the sauce). It's incredibly frustrating to be told that something is GF when it is not.

Anyway, that's kind of a separate issue, but kind of not. I think that you should not feel like you 'have' to make 2nds for them - making any kind of meal is a huge effort (at least in my book).

But it is very kind / thoughtful if you were really clear about what does and doesn't contain gluten... (maybe even list out the ingredients/cans so they can check for the 'modified food starch' and hydrolyzed vegetable protein and anything else if they are stringent) and be careful about cross-contamination.

also very thoughtful / kind to make the things you can GF. ie. normal soy sauce has gluten, but it's not so hard to buy some GF soy sauce so they can eat another item on the menu. (or gf salad dressing or mayonaise, etc) or maybe even ask them to give you these things ahead of time.

And let them know ahead of time so that they can bring their own x, y, or z - if they feel that it's just not the same without it. good luck one who's been there

Your post made me wonder what you meant by unappreciated when you referred to past efforts you had made to serve gluten-free dishes. Did you mean your guests didn't shower you with compliments, or did you mean they didn't eat what you had made especially for them? I have had the latter experience with vegetarian friends and family members. You make several vegetarian dishes that you think are really good, and the vegetarians don't touch them (and neither do the meat-eaters) because they don't like artichokes, or squash, or avocado, or lentils, or peas, or beans, or whatever. (My egetariansseem to mainly eat bread and cheese and sweets!!) In your case, I would simply ask them to suggest dishes or recipes for you to try. Be enthusiastic about it and tell them that you really want to serve their favorite food. If they would rather bring something, that's totally fine too. (My stepdaughter brought microwave Mexican food to Thanksgiving, which was kind of smelly, but at least she ate it.) Omnivore
I have friends with Celiac and once cooked Thanksgiving dinners for a guest who was both vegetarian and had a dairy allergy. I don't think you need to ensure that your guest with the special diet can eat every single item on the menu. However, I think that you should review the menu to ensure that they have a balanced meal--that they don't end up like the vegetarians who have a choic of salad and, hey! more salad. So I would serve rolls if I wanted to serve rolls, but if I were thinking about breaded chicken for an entree, I would change it up for a roast chicken. For Thanksgiving dessert, I might substitute a fruit crisp for a pie, and make the effort to find a way to make the crumble topping wheat free. I'd make rice stuffing instead of bread stuffing. I'd thicken my gravy with corn starch instead of flour. I don't think most of these changes take a huge amount of work (learning to bake with gluten-free flours is in a whole different class), but you need to be aware of your ingredients. Carrie
First of all, I want to acknowledge you for all the good intentions and efforts you have made to accommodate your gluten-free family members. I am speaking as a person who was diagnosed with multiple food sensitivities three years ago -- so I am not just gluten-free, I can't eat any grains, dairy, sugar, tomatoes, potatoes, and many, many other foods. I have turned into a creative, gourmet chef using the wonderful foods I can eat -- however, eating in restaurants is a drag, and going to anyone's home -- including my sister's, presents various challenges. I have always told my sister that I don't want her to go to any special trouble for me and I always offer (and usually do) bring food. The dishes I bring to share are ones that everyone can eat. Relationships with family members are complicated -- but have you asked your sister what works best for her? I found that even when I told my sister that I would bring food, she sometimes made two separate meals. Those were my least favorite dinners, because I felt that the food she made for me was ''less than'' the other dishes. It's actually an isolating feeling. The most wonderful meal I had was my last birthday, when everybody sat down and ate the same meal -- and it was delicious! Gluten-free is really easy compared to what I deal with. For Thanksgiving, you can easily make a gluten-free meal -- and just cook/serve the bread stuffing and rolls separately. An absolutely wonderful resource for gluten-free cooking is Elana Amsterdam's blog/website: http://www.elanaspantry.com/ You would be doing a wonderful thing by simply letting your sister know that she never has to worry when she comes to your house. I always really, really appreciate it when people cook safe food for me, even though I certainly don't expect them to. I hope she appreciates your hard work and your concern. Sensitive Eater
I would focus on cooking meals that are largely gluten-free. Cooking two separate meals is a lot of work! You certainly don't have to make the entire meal gluten-free. If you offer a gluten side-dish/dessert, it might be nice to have a GF alternative. There are actually many easy options for gluten-free breads, rolls, cookies, pies, etc. Mariposa bakery is great for GF goods. Whole Foods also has GF pie crusts, breads, cookies, etc.

Re: thanksgiving and other larger, multi-dish gatherings, I think it depends on how things are often done in your family. In my husbands family, his Mom does the bulk of the cooking and food prep (for 10 people), but she LOVES it. In my family, we all bring dishes to share. If that is the case (or if you would like more help with cooking), by all means, ask your sister to bring something! Now, if you are only asking her to bring something because she is gluten-free, and not asking other relatives to bring things, that may be a wee bit insensitive. Depends upon your relationship with her and how ''formal'' your relationship is.

I imagine that the perceived lack of appreciation is the bigger issue here. don't stress about it

Well, I am writing from the perspective of your relatives since my son (age 8) and I were diagnosed with celiac disease last year. First, I understand the difficulty in creating a gluten free meal when this is not your usual gig. It can be overwhelming. I would not however, volunteer to cook and then tell these folks to show up with their own meal. How about a compromise? Why don't you make sure the turkey and gravy are gluten free? Imagine makes a good gluten free gravy that can be heated in the microwave. Safeway sells inexpensive turkeys without MSG or gluten. Next, farm out the side dishes to other family members. They can bring the dressing, wheat rolls, pies, and green bean casserole that are not gluten free. You can buy a few gluten free rolls or a gluten free pie at Mariposa Bakery in Berkeley or at any Whole Foods. Have the gluten free folks bring a safe dressing for themselves. Everyone participates and you might have time for a glass of wine before they all arrive.

One note however, celiac is genetic. I'm not sure if these are your blood relatives, but it would be great if you could encourage all your family members to be tested. It can be silent in many people, not showing up until someone is diagnosed with other autoimmune disorders or various cancers. In my family, lots of other people have it and no one talked about it until after I was diagnosed. living without

Mother/daughter relationships can be ''challenging'' so I don't know how my experience will play out in your situation. I provide my own stuff and stuff for the kids I have who also have dietary issues. I always feel badly for bringing my own... the host(ess) sometimes seems miffed or hurt. But I do not want for one second my issues to infringe upon someone else's good time! I agree, for most of us Thanksgiving needs rolls and bread stuffing and pies (though I don't eat it anymore... so sad). If you can't eat it, don't. I would tell your daughter the menu and let her know that you will be totally okay if she wants to supplement her meal with stuff she brings from home. Say it with a smile and lots of love. good luck!
My extended family has several celiacs as well, and I can relate to your post. When I host them for a casual meal, I keep it gluten-free. This is pretty easy to do if you serve meat, veggies or salad, and rice if you want a starch. Another alternative is to have fajitas, rice, beans, and corn tortillas. Breakfast is eggs, bacon, and fruit salad. For the big family meals, we go potluck style and we have a separate table that is clearly marked for the items containing wheat (we are careful that all guests are instructed that utensils must not be mixed). At Thanksgiving, one of the celiacs usually makes a gluten-free stuffing and drops off a gluten-free pie crust at the home of the person who has volunteered to make the pies. Sometimes someone will also make gluten-free corn muffins or some other kind of gluten-free bread. At birthday parties, it is great to serve flourless chocolate cake (especially for the 8 year old, who surely has endured countless parties where she couldn't eat the usual pizza and cake fare) -- but you can also just stick with ice cream. My celiac family members are not particularly appreciative either, but it really can be a very healthy diet and it is so difficult to be a celiac kid that I think it's nice to keep family dinners a place where they don't have to worry about being the weird one out. Family member of Celiacs
I'm sorry you felt like your work was not appreciated. I would just be beside myself if someone went to all that effort for me. Now that I have been gluten-free for years, my family and friends usually make an effort to accommodate my restrictions and I really, really appreciate it. At big events, I never expect all the food will be gluten-free and I bring my own bread/dessert if I want. At times it is embarrassing to be ''gluten-free'' and have to make special arrangements, worry about the ingredients, etc. so it's possible your relative were feeling self-conscious about all the effort and didn't know how to express their appreciation. I am always grateful but perhaps not always effusive as I don't want to bring added attention to my weird diet in a large group. Or perhaps they are in fact ungrateful in which case I wouldn't go out of your way. I would not, however, insist they bring all their own food if you want to be inclusive. Socializing as a celiac is tough when so much of life revolves around food. If I had to bring all my own food to a party, I just wouldn't go. Provide some gluten-free options and make sure they know which dishes are safe. anon
Hi - this is a familiar topic because my mother-in-law was diagnosed as celiac before I met my now-husband, then I have had co-workers who are also celiac, and then my niece was diagnosed at age 5 (now 18). As a consequence, there have been many, many family (and work, and sometimes combined family-work) functions to cook for. It has actually been much more complicated along the way because the same niece and her brother (non-celiac) are both extremely allergic to all nuts except almonds, and my sister-in-law cannot eat chocolate. SO! What we have always done is to simply do a pot-luck, each and every time we get together, no matter WHAT the occasion. First off, the parents of a gluten-free (''GF'') diet child are usually very cautious of others preparing food until they are assured that you understand and completely follow all of the guidelines, which includes the smallest and most seemingly- insignificant-quantity of peripheral ingredients. So until they are assured, and until you are fully confident, simply ask them to bring the GF dishes to augment the meals. They are always happy to do so, understanding that this is usually the safest outcome of all. Over the years, I've developed a repertoire of pure GF dishes/desserts that I'll make, but will ask them to bring something that they particularly enjoy and want to share. I'd say to let go of the stress and just enjoy the pot-luck aspect of meals from now on! And then, in time, feel free to experiment when you have a chance. GF foods can be eaten by all, so once you feel confident, there will be less need for two separate menus... Bon apetit to all No stress
I am the celiac of my family, along with my 2.5 year old daughter (I have been diagnosed for 6 years) and prior to that I have always been lactose intolerant and a vegetarian for 17 years. I have to say that gatherings (family or otherwise) that include food always make me nervous as I always fear not getting enough to eat, being stuck eating salad and a potato and not enjoying the ''good part'' of a meal, ie dessert or the main course. I certainly do not expect a meal to be completely dairy/gluten free, and when attending potluck meals I always prepare something that I could live with as my only food option (like a rice salad). I am very grateful when the host of the event prepares enough food that is gluten free so that I have a complete, and celebratory sized meal, though I have to say this is pretty rare unless it's my mother who is doing the cooking. When I am going to an event and the host doesn't know about my dietary needs, I am very shy about sharing, so I have found myself hungry many a time, and thus often eat before an event just to avoid that.

As for your family, I would say that since you are hosting a ''food event'' you could either, make it a potluck for everyone, and then your celiac relative could bring whatever she feels she needs. Or, you need to provide her with a full meal. This can be easily done, if making pasta, make some just for her. Go to Mariposa on Telegraph for some bread and a nice dessert (expensive, but saves you the trouble of dabbling in the challenging art of gluten free baking). I am sorry that they don't seem to appreciate your effort to feed them, but in my opinion, you do need to try to provide for them just as you provide for your other guests. celiac, and sometimes hungry

I'm not sure I understand your attitude about this. If you love your sister and niece, I would think that you would want to provide them with a meal they can eat. Their celiac disease is a much bigger burden on them than on you. That said, I don't think that every single dish in the meal needs to be gluten free. I think it's fine just to make sure most of the dishes are and then provide alternative gluten free versions of, say. the rolls and pie. Whole Foods is a great place to purchase gluten free breads and desserts. anon
We have a relative who does not eat gluten. When he visits, we make sure there is a meal's worth of food for him that is gluten free-- in other words, we make a stew, Mexican food with corn tortillas, or pizza with cornmeal crust, etc., although we might have a side dish on occasion that he can't eat. He likes to cook, so he often will offer to make his own special bread or pie crust for everyone-- can't say we all exactly enjoy them, but it works ok. At Thanksgiving we have regular stuffing when he eats with us, but I think that's fine since there are many other foods for him to eat, but we eat a special pie with a crust he likes and then, after he goes home, we make another pie (the one we missed!) I think it is worth the occasional sacrifice in tastiness to make sure everyone feels included. On the other hand, he's been very helpful about offering to help cook, etc. I can't say he's ever expressed appreciation for the special food, but that might be because to him it's nothing special. It's no big sacrifice for me to eat gluten-free dinners for a week or so a year, compared to him giving up wheat forever. In your case, I think it might be especially important to make allowances since one of the restricted eaters is a child. It might be too much to ask your restricted eaters to bring their own food, but you could ask for meal suggestions or for them to bring a side dish, etc. And you can talk about your holiday meal plans ahead of time and get input. (I suspect that this is more about some other issues of ingratitude on the part of your guests than it is really about the food! And, I'll just say, I've got some of the same issues with my restricted eater, but I think it's best to keep them separate, if possible). -Best of Luck-- Holiday Meals are tough!
I have a family member with celiac as well. I always make sure there is food for him to eat. Sometimes the meal is entirely gluten free and other times there are separate options for him or an element or two of a larger meal he can't eat. It all depends on the situation -- if they are the only guests, that's one thing, if they are attending a birthday party for someone else, that's another.

One good resource is the Mariposa Bakery in Oakland. You can buy some rolls or a couple of cupcakes or whatever to substitute for those parts of the meal, so they have something nice without too much work on your part. To me, that is akin to buying a package of Boca burgers when you have invited a vegetarian to a BBQ. The whole meal doesn't have to conform to the restriction, but it doesn't seem hospitable to exclude certain guests from the meal entirely. THat said, if they ask what they can bring, you could certainly suggest a loaf of gluten-free bread or dessert option or whatever... Anon

I was a vegetarian for several years. During this time my in-laws had my husband (then boyfriend)and I over for dinner several times. They are meat lovers:) Anyway, dinner was usually a big slab of meat, maybe a vegetable side or two and a salad. They rarely made vegetarian meals or offered a protein alternative. Needless to say, after dinner I was still hungry. I know we were visiting their home, but it would have been nice if we could have a vegetarian meal at least once in a blue moon. I started bringing alternatives-a little tofu, a veggie burger, easy choices that weren't hard to cook/reheat. Then my in-laws started calling before we came for dinner and reminding us to bring ''something for me.'' I found it somewhat lacking in etiquette. Now I eat meat so it isn't a problem anymore. My advice to you is to continue to provide a gluten-free choice for your sister and her daughter. This is more important than my case because it is a health issue not just a choice like vegetarianism. If you need some ideas for menu planning consult your sister. You are the host and they are the guests, so I believe it is your responsibility to make sure they have something appropriate to eat. former veggie
My brother has celiac's and when I invite him over for dinner I make gluten free meals. For Thanksgiving, I make two dressings -- a gluten-free cornbread and a regular bread stuffing. I make desserts with Bob's Red Mill baking mix + xanthan gum, using recipes I know will tolerate this. Shortcakes, brownies, cookies... It's not hard, really, just takes a bit of reframing what you use to cook with. I feel it not to be a duty, but a kind thing to do, to offer foods that everyone can eat, even the allergic people. The thing is, people who are not allergic can eat the foods for the allergic people, but not vice-versa. There have been a couple of occasions when I made something that I want to serve with a good Acme loaf, like pastas (rice/gluten free pasta is available in every pasta manifestation) or mussles or whatever, and on those occasions, I ask my brother to bring his own bread of choice. Other than that, I make sure my meals include something for him, but not two entirely different meals. That just makes a big, unnecessary drama of the dining experience, which is silly. Stews can be thickend with rice or potato flour, for instance. No one will really notice the difference, nor will they care. You can use the same for dredging meats, making deep-fried foods, etcetera. Instead of regular soysauce you can purchase soy-only shoyu which actually tastes better anyway. Anyway, pick yourself up a couple gluten-free cookbooks that appeal to you and make a few things for yourself, test out some recipes, modify your own with some of their ideas. You can accommodate Celiac's diet with ease, you just have to think outside of the regular box. And yes, I think you should. Easily gluten free

Managing gluten-free - kids with Celiac

May 2010

My daughter (almost 5 y.o.) was just diagnosed with Celiac. I'm feeling totally overwhelmed by all the dietary changes we have to make to put her on a gluten-free diet. What do we do about restaurants? Birthday parties? How do we explain this to her and to others? etc. Is there anyone out there who can give me advice and walk me through this? I'd really appreciate it. Thanks - Lisa

Once you have a celiac diagnosis I hope you get some professional support through your doctor, like a referral to an R.D, to learn about cross contamination, etc. We cook mostly gluten free for the whole family now, but it was a gradual process. It has helped my 9 yr old feel included when he's sad about being different or missing certain foods, mostly treats. Finding good bread (Garbo Sport-whole grain and Schar-french bread) then finding/adapting new recipes for choc chip cookies, pancakes, etc. made a difference. We collect GF recipes in a notebook for those tired days when imagination and memory is rockbottom. For inspiration and recipes, there are many interesting sites and yahoo groups, i.e. glutenfreemom.com, glutenfreeonashoestring.com, celiacchicks.com. Amazon has pretty good prices on GF products. Best of luck!
Hi, I live a gluten-free life and it's not as hard as you think, once you get used to it. There is a ton of info on the internet about it, as well as stores that carry GF foods. I cook GF at home, even though I'm the only GF person. My family doesn't mind the brown rice pasta (Trader Joe brand), I use Chex crumbled as bread crumbs in recipes, and Jules GF Flour in recipes. As for birthday parties, I suggest you maybe bring your daughter a cupcake that is GF so she has a treat. I call ahead at restaurants to ask what's safe on their menu. Some chain restaurants have the info on their website. You are lucky she was diagnosed so early, some people suffer for many years. happy GF
Bring something she can eat to the birthday party. At restaurants, ask what they recommend for someone who doesn't eat wheat or gluten. Sometimes it is just a salad. Cafe rustica offers a gluten-free pizza. They even deliver! There are many things to eat besides wheat: potatoes, sweet potatoes, buckwheat, rice, corn, etc. Many many gluten-free products are available at the grocery stores now: noodles, brownie mix, bread, etc. I recommend Nairn's crackers. Mariposa bakery is a wonderful resource. Across the street from Caspar's on Telegraph in Oakland. Good luck! Anon
Have you discovered the Mariposa Bakery on Telegraph in Oakland? It's a great place for gluten free goodies! marika
My daughter is one and we figured out that she's gluten intolerant after 5 months of nightmare when she was 8 months old. She's breastfed and would get gluten through my milk. As soon as I stopped gluten foods, her weekly nursing strikes stopped and she's been a happy baby ever since. So not quite the same situation, except that I have had to adjust my diet. The good news is that there are more and more gluten free products out there. I found many at Whole Foods (they even have a special green gluten free label next to the price): cookies, crackers, breads and buns and pie crusts (in the frozen section), etc. There's also a good gluten free bakery on Telegraph called Mariposa. I can't help you with how to explain this to your daughter, but since she's 5, chances are she's old enough to understand that she has to avoid certain foods/ingredients not to have a tummy ache? Gluten free mom

16-year-old diagnosed with celiac

Oct 2007

My 16 yr old daughter was recently diagnosed with gluten intolerance, celiac's disease. Anyone have any good websites that she would relate to (oriented toward teen diets, food preferences) and any that as a parent I would find helpful? Currently I am seeking a site where I can type in a food and find out if it's safe or not. Does that site exist? mom in Oakland

There are many resources on the web re: celiac disease. You might start with the following:
http://health.groups.yahoo.com/group/SillyYaks/ www.celiac.com www.celiackids.com
You should be able to get a general list of ''safe/unsafe'' foods as a start. With specific packaged foods, ingredients may change periodically, so it's important to check. A new labelling law is about to go into effect, which will make things easier. There are also lots of helpful books, including one in the ''Idiots Guide'' series. (Type ''celiac disease'' into a search at amazon.com and you'll find it.) Several mail-order companies specialize in gluten-free food (see www.glutenfree.com). Whole Foods has a pretty good selection, including one freezer (at the Ashby/Telegraph store) that contains only gluten-free baked goods (bread, pizza crust, etc.) Feel free to email me with specific questions. LR

Infant with Celiac Disease?

Jan 2007

Hello, I am growing increasingly concerned that my 11th month old son may have a gluten allergy or celiac disease. Are there any parents out there that have been through the discovery and diagnosis process with young children? My son has had an alarmingly large appetite since he began eating solids and quickly becomes panicky if food is not served as soon as hunger hits. He has had many eczema outbreaks and rashes since beginning solids. I tried rice cereal several times and he broke out in red rashes all over his body. After eating his stomach becomes quite distended and seems to surpass the normal ''toddler tummy''. He still wakes twice to nurse in the night and really seems to need the milk. He often goes right back to sleep after nursing. Despite this large consumption of food and breast milk his growth has slowed dramtically. He weighs about 5 pounds less than his friends of the same age. Lastly it often seems that his tummy is bothering him and he wakes crying and wanting to be held or nursed. He is often gassy and constipated. Does this sound familiar to anyone? I would love to hear about your experiences both with traditional and alternative therapies. Thank you! Distressed Mom

Celiac disease is serious business. What you need is genetic testing, not just a blood test for antibodies. Most people who are really celiacs will show up negative on the regular blood panel your doctor may order. If you can afford it ($300?) go right to the genetic test. Dr. Aron in SF, 415-600-3700 is the only doctor I know of in the area who does this. FYI: for infants and young children, the most common symptom of celiac disease is emotional irritability (neurotransmitter receptors are primarily in the gut), not intestinal disturbances. Perhaps (hopefully) your son simply has a gluten intolerance (or dairy or some other allergy) which is not the disease at all. Good luck! Been there
Here are some resources that may help you out:

Celiac Bay Area http://health.groups.yahoo.com/group/celiacbayarea/

Bay Area Celiac Support Groups http://www.bayareaceliacs.org/support_groups.htm

National Digestive Diseases Clearinghouse http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm

If you have suspicion of Celiac Disease, please take your kid to a gastroenterologist PRONTO - This is a disease that is easily controlled with a gluten-free diet, but can cause all kinds of health problems if not properly diagnosed. Good luck! Anon

I;m sorry your little one isn't feeling well! I went through some similar stuff with my son, although he turned out not to have celiac disease. There is a simple blood test for celiac which your doctor can do. You can also eliminate gluten and see if that helps (wheat, rye, barley, flour). But since the rice cereal upset his tummy, and rice cereal doesn't have gluten, he may just have a sensitive tummy (like my son). Giving probiotics helped--we gave 1/4 teaspoon Jarrow baby acidophilus mixed with a little milk, yogurt, or applesauce. Once he was old enough to chew, Yum Yum-dophilus pills were a big hit. (Both available at whole foods and elephant pharmacy.) Dr Lodewick, an allergist and immunologist in Berkeley, was also very helpful in doing tests to rule things out. Good luck! mom of gassy boy
To test for celiac disease, a simple blood draw is required. Not pleasant, but not a huge deal either. Trust yourself, is my advice, and to ease your concerns, start with a pediatrician visit and explain all of his symptoms. If you're worried about blood sugar levels too, you can ask for both to be tested and have the blood drawn at the same time to test for both. That would mean only one poke. Probably the glucose test will have to be after fasting (8 hours, I think). Maybe he's just having a growth spurt and is hungrier because of that. But, why not rule out your worries, restore your peace of mind. If something shows up on the tests, you'll be able to address any problems earlier, and that is always better than later, IMHO. mother of endocrine challenged child
While I cannot specifically answer your question, I have good friends with Celiac Disease. Your concerns seem well-founded. Here is a list of resources which I hope you will find helpful. Connecting with other celiacs or celiac families is one of the best things you can do, and BPN is only the tip of the iceberg. There are a lot of great celiac support groups in the Bay Area and online.

www.celiac.com is a wonderful website with a ton of information and links to other resources. Go to the message board section - they have one or more forums that will apply to your situation.

There is a support group organization called ''Raising our Celiac Kids'' a.k.a. R.O.C.K. with groups in the bay area. Use google, or go to www.celiac.org (click on kids corner) or www.celiac.com to find listings for the local groups.

Also see www.bayareaceliacs.org and click on support groups for more local groups and yahoo mailing lists.

If your child does have Celiac Disease, There's a wonderful 1-day conference at Stanford every September or October that you will want to attend. It is intended for celiac patients, caregivers and health professionals, and is organized by enthusiastic volunteers. Information, when it becomes available in mid-summer is usually found at http://www.celiacsprue.org or google ''stanford celiac conference'' to get a picture of past years programs. A gluten-free friend

i have celiac disease and most of the symptoms you describe do not seem like he has celiac disease. It does not have anything to do with the apetite level. The only symptom that might be it is constipation. Also celiac people eat mostly rice based items s clearly it's not it. There is a simple blood test to do before treating him for something he might not have. anon
I have celiac disease and it runs in my family. I read your post and the replies.

You received some helpful information for celiac websites. However, I wouldn't jump to the conclusion that your son might have celiac disease just yet. The symptoms you are describing sound like major digestive troubles that can occur in some babies. Babies have very sensitive digestive systems. Any new food introduced for the first time can upset a baby's digestive track which can result in gas, constipation and eczema. Rice, apples, bananas and milk can all cause constipation. Plus cows milk and wheat are extremely difficult to digest for anyone at any age. The only thing you mentioned feeding your baby is rice cereal. You did not mention feeding your son gluten containing grains like wheat, barley, rye, and possibly oats.

(Rice does NOT contain gluten. Some people think it does because they've heard the words ''glutinous rice'' which is not a true term, it's only a despription of the texture of a type of rice know as ''sticky rice''). Are you feeding your baby other foods, like wheat (contains gluten), cows milk, cheese, fruit, etc? If so, don't try to introduce too many different kinds of foods all at once, as this may confuse you as to which food is causing the problem. Introduce them one at a time. Keep a food diary. Talk to your pediatrician about it. It makes sense that pediatricians are always telling parents not to feed their babies wheat, eggs or dairy until they're at least 1 years of age. These are common food allergens, and a child can develop an allergy to one or all of those foods if he/she is given them at too early of an age. Before you jump to the conclusions about celiac disease, I would first keep a careful watch on what kinds of solids you feed your son. The problems may eventually clear up. If however your child gets worse, especially after they are eating a regular diet of solid foods, then I would look into food allergies, intolerance and even celiac disease. The celiac disease websites can help you with what to look for in children. The problem with the disease is not the disease itself, it is easily cured with a strict gluten-free diet. The problem is our medical system. In Italy all children are routinely screened for celiac disease by the time they reach 6 years of age. In Europe the average amount of time it takes a doctor to diagnose a patient with celiac disease, from the time their symptoms first appear is 6 months. Here in the United States it takes on average 10 YEARS! By the way, I've read that the simple blood test most doctors start with is not always reliable. I don't know what they use in Europe. Good luck Laurey