kbtoyssni

Gosh, I'm hoping the reason you are dealing with this is because your daughter lives out of town and is traveling back to the hometown for the wedding. Here are your options:

1. Daughter skips rehearsal dinner.

2. Daughter goes to dinner but doesn't eat.

3. Daughter goes to dinner and brings her own food.

4. Daughter insists that venue get changed so she can enjoy her own dinner.

If it were my rehearsal dinner, I would insist on #4 (or I'd pull a #1). Sounds like you have talked to the MIL and she's not real keen on moving the dinner. NOW is the time when you have to lay down the law about food stuff. She's going to have to deal with the MIL for the rest of her life, so get this confrontation over with now. I know there's issues about keeping peace in the family, letting whoever is paying for the dinner do what they want, etc, but medical conditions have to trump that. And to whoever said pizza places are full of flour and chances for CC - I agree. I would be nervous even being in a pizza place, hugging and kissing all the relatives who have been eating gluten. I would eliminate options #2 and #3 because of this.

Could you get a 504 plan for HeadStart? I think it is completely unreasonable that you can't send food with your daughter - it's obviously the safest option. No way will they be able to cook for her. Not that you want to send her there since they're only going to "try" to get it right. Would a 504 or IEP allow her to just use the speech therapy part and not attend the rest of the day? Not ideal, but it might work.

Seems like your best option is the elementary school even though she won't be as medically challenged as the other kids. Would the other kids' health problems affect the quality of your daughter's education? If not, I'd follow up with that one.

Are there other activities she could do to be around other kids? Sports or play groups or something?

As long as you don't feel you have to replace all your former gluten foods with gluten-free substitutes, you can probably get by with shopping at the regular grocery store. If you stick with the fresh veggies and meats plus safe brands, you can eat really well.

I'm confused - a gastroenterologist told me that unless I was eating gluten for 4-6 weeks at every meal the blood test would not be conclusive. What blood test can be run?

Candy

Your GI is correct (he's a keeper!) But if you have tested positive, you can then repeat the test every six months or so to see your levels go down. And some people's levels will stay high enough to test positive for a while - this usually means gluten in sneaking in somewhere and you aren't 100% gluten-free. Or I guess if you were very sick, they might stay high for a while.

Spelt is an ancient derivative of wheat so unfortunately it's a no-go for us gluten-free-ers.

When I was a kid we used to stop at waysides or even gas stations that had some grass next to the parking lot. We'd pull out our picnic blankets and coolers and tea (we're english so we always had tea!). So if the weather is good, this is an option. It's great for longer trips when you want to stop to stretch the legs.

Kinnikinnik bagels are pretty good, and you can order them online.

CLARIFICATION: I'm actually not sure on Cover Girl mascara. I thought that was the brand I've used, but it turns out I've used Maybelline instead.

He said she has damage, just not as much as you normally see in a celiac biopsy. what do you mak of that? i'm really confused, because he was our second opinion.

She had damage??? Then she has celiac. Not having as much damage as normally seen in a biopsy is a good thing - it means she doesn't have as much damage yet. Get this kid off gluten!

Thank you, Ursa, and may I ask another question, since you are obviously well informed? How long would I need to put my daughter on a strict gluten-free diet? She has already told me that there is no way she would do a biopsy (remember the anxiety) and the diet would be a hard sell, too. I might be able to pull it off with some very major bribes, though. I could appeal to her vanity, too, because she has an acne like skin condition that I can't remember the name of right now that is supposed to respond well to a gluten-free diet. Also, I'm sure it would help if her Dad and I did it, too.

With her being on a mostly gluten-free diet at home, it's highly highly unlikely she'd ever test positive via traditional medical testing. Guidelines are 4 servings gluten for 3-6 months minimum to hope for a positive, but as you've seen so much behavioral improvement, she's probably already healed. To get a positive, you have to have a lot of damage and it's certainly not worth putting her through that - it's a great way to make her sick for a few years and set her up for future health problems. As for how long she needs to be one the diet - unfortunately it's forever. She's obviously got some issue with gluten, so she's going to need to do this for the rest of her life if she doesn't want to get sick and run into major health issues and die young. As for how to convince her - maybe a positive genetic test. Enterolab also does stool testing for gluten intolerance that's accurate for up to a year after removing gluten so that may still be an option for you. Maybe scaring her into it - get some of the books that talk about all the complications?

I am hesitant to admit that I have no idea how one goes about a gene test. . .Would I start with my doctor? Or is there some helpful mail in lab? Thanks for the idea.

I know enterolab.com does gene tests.

Not exactly sure what the doctor means, but she either has celiac or she doesn't. So if it's "in-between" I'm guessing there might have been slight damage in one spot or not enough damage that the doctor wanted to diagnose her. Many doctors feel that the gluten free diet is just too hard, there's no way they want to "sentence" you to a life of not eating gluten! [Even though I would argue that sentencing someone to a life without gluten is the humane thing to do.] I would go gluten free right now since it seems highly likely this is the problem. It's certainly worth a try with the health problems you've had.

You should be able to go into the doctor and get the films/slides from her biopsy and have another doctor read them if you're looking for a better explanation from a doctor on what "in-between" means. But if it were me, getting her slides re-read is a far as I'd go in pursuing a diagnosis. I wouldn't bother with an additional biopsy - you'll know if gluten free is right once you do it. Good luck.

I use my fingers to brush out any clumps I get which means I often get mascara on my fingers. I always wash my hands afterwards, but you never know. I use gluten-free mascara just to be safe. I use Rimmel brand. Pretty sure Cover Girl is also gluten-free. Not sure on the shampoo.

It sounds like it's just taking you a long time to heal. Which must be really hard, but hang in there. Maybe some gluten in sneaking into your diet and you don't realize it. Have you checked all pet food, personal care products, any housemates' personal care products, do housemates eat gluten? Did you replace all wooden spoons, the toaster? I'm sure you've heard this all before, but I wanted to say it again just in case.

And, yes, when your tests finally do come back negative, it just means you've healed. You still have the disease, and you still have to stay gluten-free.

The processing of wheat starch eliminates nearly all the gluten. In countries with codex standards, wheat starch is often used because it will test below the required ppm of gluten in a food. This does not mean it's 100% gluten-free, just that it is very, very, very low in gluten. Most celiacs are ok with this - the very sensitive are not. I am not very sensitive, and I still choose not to eat wheat starch. As for wheat allergies, I'm not sure what part of the wheat people react to (although it's probably not the gluten) so I'd guess wheat starch is not ok for allergies.

I hear you. I actually heard someone mumble about how there were too many children in the world and that I should have thought of that (I have triplets).

Woah - did they think you just woke up one day and decided to have three kids at once for the heck of it??? It's not like you have much control over stuff like this

I hope you find more to life than food from a single grain."

Oooh - I love this!

Hmmm, I don't know. Do you eat crisps often? It could be that the oil/grease just upset your stomach. Or maybe it's that the party threw off your eating schedule which is making you feel yucky? I hate getting random stomach pains - I never know if it's gluten or I'm having a sick day.

Enterolab can also detect gluten intolerance much sooner than blood tests and scopes. Reactions to gluten happen first in the intestines which can be detected in stool. It takes a long time for your body to create enough antibodies for them to start leaking out into the blood and for their to be enough intestinal damage to show on a scope.

I find most people like that think about their current life and what it would be like to take out gluten. For them it would just be a hardship and wouldn't bring any benefit to their life. But a celiac's life on gluten isn't a normal one. It's one of being very sick, bedridden, in constant pain, dying young. To a celiac, there's a huge benefit in not eating gluten. I would have politely turned around and told that couple exactly why my life no longer sucks - because I don't eat gluten!

Do it for your son. If you want to be around to watch him grow up for as long as possible, you need to stay gluten-free.

I've taken Delsym cough syrup, Halls cough drops, DayQuil.

Plus there's always the risk of CC in a restaurant.

The worst thing in the world would be to have undiagnosed celiac disease. This will eventually lead to the kids getting sicker and sicker until they're too sick to get out of bed. Or it could lead to cancer and other lifelong irreversible health conditions. Or early death. Cutting gluten out of a diet isn't easy, but the alternative is much much worse. Maybe getting your wife some books that talk about the long-term health implications of undiagnosed celiac disease would help? And I'm completely blanking on the name of my favorite book right now...

You could try enterolab testing. It can detect gluten intolerance long before blood tests and scopes can.

Places with gluten free menus are great because you start off knowing that at least the ingredients are gluten-free. But I still go through the how to prepare without CCing my food speal. I suppose I don't tell them this beforehand, but a waiter who responds to my concerns and gets me a safe meal is well compensated when it comes to tipping! If you're really nervous, talk to the manager and have him deal with your meal. Some waiters are very knowledgeable, but some are young and don't know much about the diet. The manager should know about food allergies, though.

The first few times are tough, but eventually you start to know what questions to ask and where the potential pitfalls are when eating out and how to request a meal be modified.

I wouldn't even bother with the party food. There's a high risk of CC from anything at a buffet. Someone touches the pretzels and then touches the gluten-free food and you'd have no idea. I'd just eat well before you go and bring your own food. If it's just snack food, it's easy to avoid. If it's more of a sit-down lunch, then you'll get plenty of questions. I just say I have a ton of food allergies. If people inquire further I say I have celiac, can't eat WBRO. Then they usually ask what happens if I eat it and I say I get really sick (trying not to get too specific while people are eating!) maybe mention stomach aches, joint/muscle pain, fatigue. THEN I often get questions like "well, this dish shouldn't haven gluten in it, want to try?" to which I respond, well, you just dipped your bread in it so it's no longer gluten-free... I'm really positive about everything so I find people are genuinely interested and I think education about the disease is really important and this is a great way to do it.

No. IBS can have many causes, celiac just being one of them. Other possibilities are candida, chrons, ulcers, etc.