Arpita

No perfect answer. I have been in this situation for the last two years. It is much better than 2 years ago, but is far from perfect. It was crazy. She was loosing herself completely. She yelled at me and everyone all the time. Now, we talk, and she goes off her diet less often. She admits to going off her diet (not every time, but before she lied continually even after being caught). We talk more. She still has problems, but she's learning to manage them slowly and with some failure. Mainly, our relationship is good.

First, she doesn't take any medication. My daughter has partial seizures which manifest as hallucinations, alternate realities/personality stuff, extremes in moods, and so forth, all in reaction to gluten and casein, with seizures being confirmed neurological diagnosis, and that they are created by gluten - "celiac induced" seizures (we figured out the casein, it was actually more often - milk = hallucination immediately). Anyway, we have never done medication due to the horrible side effects such as suicidal tendencies, and the poisoning effect of upping dosing and mixing meds until tolerated and doing it again. We are very thankful, since we have a friend with a child who reacted to seizure medication in an extreme way, and was hospitalized and in pain for 2 years from internal burning from the medication and finally died (they never even looked for gluten/casein; though when visiting, he immediately seized after eating cake and was known to have that problem). Anyway, a lot of the bipolar meds these days are actually seizure meds these days - trileptal, ect. - so I'd look into that carefully.

Second, we homeschool, but I don't monitor everything like I know some parents do. She has opportunity to cheat, but the pressure is less. The pace of life and all the other social and emotional upheaval of school is less. She can handle her reactions at a slower pace and can handle life's problems at a slower pace. She doesn't have to face the food issue EVERY DAY, all day, and in a mean way. Now she can handle it weekly, or less if we decide its needed. And, yes, she cheats, and she feels it, and I think still hides symptoms, but tells me a lot more often now. Mainly, we get along so much better. The emotional upheavals are there, but not against me. I'm really proud of her in a lot of ways. She wants to go back to school. That's hard, but she still needs this slower pace to have the opportunity to stay on the diet and become the best of who she is.

Third, I stopped talking about food and food reactions as often. I stopped trying to figure out whether each emotion of hers was a reaction or not. Basically, I couldn't and the stress of it was overwhelming us both. I stopped feeling angry at her for going off the diet, when I was working so hard and thought it was a problem with a new food brand or something. Now I accept that her emotions could be a number of things, and that we need to deal with them. We need to deal with the person not just the cause. No matter what happens, we still have to deal with "who we are" when we react to food because of cheating or accidental exposure.

Also, I keep in mind, that I really can't control her choices, but I can control her environment. And, I choose how much to do that. At this time, she home schools, goes to classes and activities without me there, and does things with friends without me there -- but all at a slower pace than she did when at public school. New friends come to our house; freedom depends on her track record with a certain friend. I have friends who monitor their every kid's action and are with them every moment -- this is also an option. But don't think that if you do this, you are eliminating cheating, they can have someone sneak them something while your head is away -- so I don't think you can ever really perfectly answer the question "is this food?"

This is such a hard place to be in. Your daughter's mental health, and knowing that once she cheats, she is less able to avoid it again, because her mind is affected. But this is the nature of it, we have to learn to say "no" and learn to say "I'm sick," and we have to learn to do this when we have already been glutened! Hang in there. I hope this helped.

Just an open opportunity to hear your experience of your teen's struggles with celiac, and what works (and doesn't work) for you in supporting them and encouraging responsibility for their health.

Oh, also, I bet in a year, your child will no longer be difficult. It was amazing for us, she changed like night and day, it was really amazing...

My 13-year-old daughter has had celiac for almost 4 years, and myself for three. Its a hard road, this food causes behavior health thing, a road that can be hard others to understand as well. First of all, it will become more obvious over time. I could tell the best after about a year after diagnosis. As she has become a teenager, it is harder to tell since the hormones and because she keeps things to herself. Usually, I just sense it, when behavior interferes with everyday functioning, when I can see it in her face -- bags, pupils, and a certain type of hyper-ness/depression that has a different look to it. But I find it hard to tell the reaction in myself, because my reactions are so delayed, and I have problems with many foods. There were years, where I was concerned about this a lot -- knowing the difference -- but it can drive you crazy. Really, in many ways, you need to respond similar to her no matter what the cause, because the world will. Also, because she'll never be free of having accidental gluten reactions, and she will have to learn how to manage, accept, talk about, and deal with the behaviors and emotions no matter what the cause. It's nice to think it is always obvious, and that we can just "wait" until the reaction is over. But we also have to deal with who we are and how it affects others, no matter what. Focus on helping her get the tools to manage the behavior and emotions as much as possible. At the same time, keep doing the best to take care of the health issue (no gluten), and trust that most of the time you will know. Even if the blame is food, there's one person having a reaction, who is angry and talking, and going for a walk, and another who lets that anger take control and become aggressive physically or verbally. Keep it up!

Thanks everyone!

Going to India - can anyone suggest a anti-diarrhea medicine that is GLUTEN and DAIRY free? We usually go without medicine..., but when out of the country, I want to make sure my daughter has something.

Anyone with experience eating out in India & Singapore? Gluten, dairy, problems - very sensitive.

I'd like to get more postings on the LAYS - original classic or wavy. Do you have a gluten reaction to either of these types? (just the plain, potato, oil, salt)

I prefer to substitute sorghum for everything. I can't tell any difference in the taste or texture, like I do with rice flours. You can get it from Bob's Red Mill, or cheaper online from Twin Valley. It is best to add 1 TB or more of corn starch for each cup of sorghum flour. The same mix above (with the tapioca & corn starch) can be used; just use sorghum rather than rice flour.

You can get jawar flour (which is same as U.S. sorghum) and make puri with it (that is the same as a chapati in oil). It taste best if it is mixed with mashed potato when prepared. It is a common food among the poor of India. You can eat rice and lentil soup. You can eat a fried food called pakora that is made with bean flour. You can eat dolsas and other rice based fried foods from South India. Watch out for the yogurt in everything if you are in North India. Hope that helps.

Thanks, that's a great list! Ever seen any list that include dairy/casein? Most alcohols don't have it, but liquors can. I'm wondering about rum, butter? I don't know why -- maybe just the hot butter rum thing?

This obviously isn't exhaustive, but it is the best list of beverages I've seen:

Open Original Shared Link

Thanks!

Anybody ever called about Allegra (only the antihistamine) having soy? I got info last year on its gluten and dairy free status. It took a long time for a response.

Besan is a yellow lentil flour and chickpea flour is from chickpeas/garbanzo. Either can be used to make pakora. Both make a good coating to fry chicken.

https://www.celiac.com/st_prod.html?p_prodi...-06107387252.38

This may be helpful.

Thanks - I don't know why I didn't notice the list on this cite as well. Anybody with info on particular brand names that they have already called? I'm a bit concerned b/c my last assumption that Brandy would be gluten free - turned out wrong. Just don't want to start contacting them all, if someone has already done it! Thanks.

I have a question for everyone about your Food Logs. How do you track everything? Do you write the times you eat the foods/times for symptoms? Or what about ongoing symptoms that don't go away, ect.? Currently, I just write down what I eat and at the end of the day I write what all of my symptoms were. Is there a better way?

When we did logs, this is what I did. I write breakfast, lunch, dinner and snacks in between (but not exact times). I write all the symptoms I had that day. I don't look at it and figure it out each day. After a couple of months, I return to it and look for patterns of symptoms. Sometimes they show up the next day or even 3 days later for some people. Yes, I write down all symptoms. It's really important to look for patterns, because you can have a food and not obviously react EVERY single time (in the same way that you can take tylenol for a headache and it doesn't eliminate the headache EVERY single time). you can also have symptoms due to stress or other problems. If you get over-detailed, then you can see the forest for the trees. Another more obvious way is with elimination - compare a several month period eating a particular food(s) with a month period not eating that food. If this is for yourself, write, write, write - but don't examine it until later (less stress too). My experience is that if it is for a young child, it is easier to figure out. But as children get older they can cheat, the pressure outside the home is so strong. It is not fun to be eliminating foods based on a log and then find out it was gluten outside the home instead of something else.

Anybody ever called about Allegra having soy? I got info last year on its gluten and dairy free status. It took a long time for a response.

Any suggestions for Gluten free alcohol that is fully gluten free (other than wine). I have a list of brands from an online site, but I don't see most of the brands from that list in my local store. Last year, I got some brandy of a different brand than on the list, and just in case, e-mailed them about possible gluten. I wasn't worried and drank some that night. Felt bad the next day and then the e-mail returned with "yes, trace amounts of gluten." Definitely no dairy either. I'm interested in Rum, Brandy, Vodka & Kaluha substitute (Kalua has dairy I was informed) -- Made in USA preferable.

I would love to know how the sauce is made. I can't do dairy or soy either and I have given up on dairy replacements because they're all soy, or if they're made with rice, they aren't truly dairy free. I would appreciate it...if you're willing.

Kassandra

I find that coconut milk is a great replacement in baking, sauces, and mashed potatoes. Shelton's chicken broth or just hot water is good for this as well. Yeah, even the new Hemp Milk, has rice syrup (not sure if Hemp Bliss does also, but the other brand does). I posted some sauce recipes above also

Although I haven't tried it yet, I was just looking into quinoa pasta through the brand Ancient Harvest (corn & quinoa). I make a soy-free, dairy free, gluten-free sauce by putting broth in a jar (either Shelton's chicken broth or left-over beef juice from a london broil, roast, or steak). I add about 2 tsp sorghum flour. I shake it up. Heat it on the stove (med to med high) until boiling some. Then I add water or coconut milk until it reaches the consistency I want. Lots of salt and spices. You must eat it soon, as it will congeal quickly. The beef tastes better. I like the chicken sauce better when I add garlic powder and basil (add it at the end or it will clump). I also make a hamburger helper type of thing. I cook hamburger meat, add pacific tomato sauce and gluten-free chili powder and other spices.

Wow...sorry, about the story with the doctor. Great resources given by another member above. I'd just those out. From what I've researched, I would thing the glutening from 2-3 weeks ago would be enough to lead to that result. I know I definitely have symptoms that long in response to one glutening, and that with time smaller amounts of gluten make me respond (though I am much better in terms of symptoms overall!).

There is a great casein and gluten free candy list on www.gfcfdiet.com. or google gluten casein free and autism and it'll come up. Some that are also soy free are hot tamales, mike n ikes, sweettarts (original only), smarties, candy stix. Peanut butter kisses are great. Skittles depends on the flavor, and has mixed information.

Hi,

I have been a year and a half gluten, soy, dairy, corn, legume and nightshade free. I have CAREFULLY and painstakingly slowly added back potatoes (in the form of UTZ chips) and tomatoes and seem to be having success as long as I go SLOW and easy. I have also put almonds back slowly to much success. I react to many foods (I guess some of us should really just live on air, eh?) I've kept a detailed food log for a year and a half that helps me pinpoint trouble and sometime leaves everything a mystery. But for the most part, I highly recommend a food log with how you felt that day to help sort out problems. There IS hope, I think, but you must go slowly and only ONE food at a time.

Good luck,

lisa

Thanks. I kept a food log for my daughter for over a year, and almost that long for myself. That is how I ended up eliminating so many foods for myself (this happened sequentially after the initial gluten free, shortly thereafter dairy free that started in Jan 05). I am grateful that so many of my symptoms have gone away. It's nice to hear the hope that someday foods can be added in, and that it doesn't have to be the never ending elimination story that is common. I was thrilled in the last week to be able to take probiotics for the first time. Supplements, other than cod liver oil, have always been a huge problem for me (even before celiac). I love your "just live on air" comment....I can relate.

I noticed on miss roben's website, they have covers for grills and toasters to prevent contamination issues. I was wondering if anyone has ever tried to bring one in to a restaurant and ask them to use it? Perhaps making it easy for them would help? I basically can't eat out -- been trying for 3 years! I eat out maybe three times a year. Two or three of the three times results in getting sick. But I really miss it socially speaking! I even go and talk to the restaurant in advance (works good, but I hate it). Let me know.

It is very overwhelming (gluten free almost 3 years). It is natural to be anxious when food is making you ill. After a bout of illness, that happens to me even now. Anxiety is natural when you are ill. I have found that trying to not be "anxious" or "mad" at the anxiety helps. Also, that it won't go on forever, you will have days you feel well. Also, part of my symptoms from gluten itself used to include super high pulse/panic type of anxiety, and that particular symptom cleared up completely after being gluten free about 6 months or so. As for the diet, I would keep it simple. Eat plain meat (all unprocessed beef, look for chicken that says "may contain water" - nothing that says added "broth or other ingredients", all unprocessed pork except look at ingredients for pork loin), plain vegetables, plain fruit, and cook with non-iodized Morton salt (no dextrose) and olive oil, and have pans and a separate kitchen area for your cooking. I'm not saying that this should be your diet forever! But for me, it was less overwhelming to start with simple foods and not to have to worry about the lists in the beginning. When you start feeling better, it might be easier to tackle that task. Besides food doesn't look so good now anyway! It took a year for me to figure out ingredients and all. Even now, things always change. And, there is always the balance of being careful versus taking risks; looking for the cause of a current bout of illness versus accepting uncertainty. You will get better! It is tough, hang in there! If you have any questions, feel free to send me a message.