schuyler

Thanks for all the info!

I called the restaruant, and they went over all the things I could eat there.

I already have my own tamari sauce, so I'll just bring that.

Hopefully I won't gag on the sushi =)

I just found out that I'm going to be meeting a friend for dinner @ a sushi restaurant next week. She knows about my celiac and picked this restaurant because she thought that I could get something there.

So, sushi's just fish, rice, and seaweed, so it should be okay right?

I've never had sushi before, so I really don't know much about it (I actually haven't eaten fich since I was 5, but I'm willing to try sushi). Are there any sauces for sushi; if so, are they okay?

Any info would be awesome!

TIA

Danielle

My cousin's 3 boys lived with me and my parents for a few months while she was in Iraq. While they were with us, I had the boys tested through enterolab, and all 3 of them tested positive for the celiac gene and two of them tested positive for gluten intollerance, soy allergy, dairy intollerance, and corn allergy. They all did so well on this diet that the dr gave them a diagnosis of celiac.

The boys have been back with their mom for about 3 weeks now. I saw them yesterday, and she had all 3 of them eating grilled cheese sandwiches on whole wheat bread! Afterwards, the 3 year old threw up and her 4 year old went into a rage. She sees no reason to keep them on "such a restrictive diet", since they don't always complain of stomach problems (the 3 year old, who tested negative, only occasionally complains of stomach aches).

Her 4 year old was just kicked out of preschool for behavior/anger issues, which my cousin attributes to their dad being a horrible man. I think she is partially right, but Nicolas's behavior issues went away while with me, I'm positive that his allergies play a huge role too.

The 3 year old now only weighs 17 pounds! He is really tiny, and looks like a classic celiac kid. He has horrible night terrors lasting 30 min + a few times a night, and he eats constantly. But she says that if he had celiac he would have diarrhea (he's always constipated).

Her 2 year old started saying a few words while gluten-free,df,sf,cf. Now, he won't say anything. My cousin says that his lack of verbal skills is bcause he was a 1 lb preemie. But why would a kid lose verbal skills that he once had? He also has constipation issues.

All 3 of her kids have hyperactivity and behavior issues (more thatn just typical boy behavior). She says that their diet was too expensive to stick to, and she doesn't think they need it.

I am just so frusterated! I know my cousin would never deliberately harm her kids, but she is in major denial about this! What really gets me, is that before she went to Iraq, she was pushing to have all the kids tested. I had the boys on a diet of organic chicken/ turkey, organic vegetables and fruit, and rice. They only had an occasional treat. The diet was actually cheaper than a regular diet because I wasn't buying many premade things ( except for the few treats that they had for celebrations).

I don't know what to do??!!! I plan on showing my cousin all the responces that I get on this thread. Any advice for either of us would be greatly appreciated.

I hope Emmie's feeling better today! Gatorade helps me the best when I'm dehydrated.

Wanna know whats weird? mine has worked exactly opposite of your situation. before going gluten free, it couldnt be any more normal (it would come every 28 days, always last for 5)...and AFTER going gluten free it couldnt be more ABNORMAL.!!!

~ lisa ~

Me too! It's actually starting to worry me

I wish I knew how to help with your dad. My dad's the same way. He has the same symptoms as I do, and he knows that since I have 2 copies of the celiac gene that one must have come from him (my mom was recently tested, and was negative). I think he knows deep down that he has it, but he doesn't want to admit it to himself. He is addicted to gluten. I have been doing more gluten free baking (since his favorite foods are things like cookies), and he's loved some of the things that I made recently. I'm hoping that once he sees that gluten free foods can be good, that he will go on a gluten-free diet. Hopefully...

Danielle

Courtney,

I've been gluten-free for about 10 months, and I still have brain fog. I am so spacy sometimes that it drives me crazy! I have only been this way for the past few years.

But, I have an excuse for being an airhead... I'm blonde.

Danielle

I'm glad that Megan's doing well!

I love the picture of them all dressed up; they are so cute!

Red Robin is awesome! I work at one, and so I get to see exactly what goes on in the kitchen. They are very knowledgable about cc issues and will prepare everything using clean grills and deticated fryers (I made sure to educate them!). They will prepare your burger away from the buns, etc.

I eat there all the time, and I always get the Vegetarian Red's Rice Bowl without the fried noodles and with the sauce on the side (sauce is not gluten-free). I have never had any issues.

The boys always get a patty with lettuce and mustard, a salad (they bring their own Annie's dressing), and a bowl of rice. They love it!

I'm so glad to hear all these good things about Red Robin!

So I'm normal after all!!

I guess I am greiving the loss of foods that I had eaten for 20+ years. You kind of grow attached to things after that long!

I made a nice gluten-free cake this morning, and the boys and I have been pigging out on it all day! It was so good (yes, was; it's gone now!)! I agree that I should focus on what I can have as opposed to what I can't. I can have a great gluten-free cake! There are plenty of things that I've eaten all my life that I can still have (fruit, veggies, etc).

Thanks for reassuring me that this is all normal .

The classic white flour thing

I hope you don't get sick.

1. How long have you known you’ve had Coeliac Disease and what is your age (age-optional)?

I was diagnosed 9.5 months ago, but I've been sick since I was a young child. I'm 21 now

2. Is it hard to cope with this condition?

At times. At first I had no problems, but I've recently hit a rough patch.

3. Do you understand what is wrong and what it’s doing to your body?

Yes

If yes could you briefly tell me what happens to your body if you eat something containing gluten?

When I ingest gluten, an autoimmune reaction occurs in which the villi in my intestines are damaged causing multiple problems. I get really bad abdominal pains, diarrhea/constipation (it alternates between the 2), brain fog, fatigue, body aches, arthritis, vomiting and many other unpleasant ploblems.

4. Do you find it hard to find foods that you like?

At first it was a lot of trial and error because most gluten free speciality foods taste like cardboard. Plus I have other food intollerances, so that makes it more difficult. Now I have quite a few brands that I trust and like, so it's not hard now.

5. Does anyone else in your family have this condition?

Yes: my cousin's 3 boys were recently diagnosed (2 by enterolab testing and 1 by positive dietary response). I'm sure that my dad also has it, but he won't go for testing. Also, I just found out that my mom's brother had a wheat allergy as a child that he supposedly outgrew; which I think is celiac. I also think that my mom's grandma had celiac as well. They all have so many of the symptoms.

6. How did you find out that you had it?

Family Dr diagnosed through blood test then a GI confirmed diagnosis through biopsy.

7. When you go out to dinner do you find it hard to find food that you can eat?

Yes, I'm tired of plain salads. My other food intollerances and my semi-vegetarianism make eating out hard.

8. Do you find there isn’t enough of a variety of foods that you can eat?

Not really.

9. How do you find the price of foods?

The speciality foods are a little expensive, but I usually try to eat foods that are naturally free of all of my food intollerances.

10. Which Super markets do you find are best for gluten free foods?

Other Please State: Raley's (California). The Raley's stores near me all have a natural foods section that has a gluten free sub-section that has a lot of gluten free foods.

11. Knowing that you have Coeliac disease does it make you feel any different to anyone else?

Sometimes. I know it shouldn't, but sometimes it does.

Good luck with your project!

Wow, that's a lot of juice!!

The boys are only allowed juice (watered down) on special occasions. Other than that, they only drink water and/or rice milk. I don't see the need to add juice to their diets, plus they eat plenty of fresh fruit, which I think is healthier.

I know what you mean about seeing young kids drinking juice and soda from bottles. I about died the other day at work, when I saw one of our clients at work giving her 9 month old a bottle filled with soda. When she saw my horrified expression, she quickly reassured me that it was diet soda; like that really changes things! She's pumping junk into her daughter's body during an important time of development.

What does this mean? (I'm not very technically astute!)

IKWYM= I know what you mean

I'm so happy that Megan's doing better!

When I was first diagnosed with Celiac back in Jan., I had no problem giving up gluten. In fact, I was excited to finally be doing something to help myself feel better. I never went through any kind of depression, gluten withdrawls, self pity or anything else.

Why am I feeling that way now? Last week, I was almost in tears when my family decided to order pizza and the boys and I had to eat gluten-free pizza. I love my gluten-free pizza, so why was I so upset? Monday at school, one of my professors passed out donuts. I never liked donuts even when I could eat them, so I have no idea why I was so upset that I ended up leaving class. Things like this have been happening almost daily.

I understand that it probably has something to do with the fact that I'm finally starting to feel better. The thing that I don't understand is why am I getting so upset over things that I never liked before or things that have a replacement that I like just as much as the original.

How can I get past this?

Danielle

Two days ago, the boys and I were glutened on a flight back east. It was a really bad glutening too. The whole plane hated us! Plus the boys get really grouchy and have anger issues when they're glutened.

That was the longest flight in my life...

Celiac should be called Confusing Poop Syndrome...or something more appropo...

Agreed!

I'm so glad that Megan's tasting food! That's a HUGE step for her!!! Go Meg!

I hope you are all feeling better.

I'm glad everything went well!

I have one. Mine also lists allergies to medications, but I think I'd still wear one even if celiac was my only problem. Honestly, just by showing my Medical ID, I've been allowed to take food into places that have a "No Food" policy. It's really helped me.

The boys wear ID bracelets too, and theirs just list food allergies (under celiac it says only feed me gluten free food). Since they are young, many adults don't listen to them when the boys say they can't eat something, but the people back off once they see the Medical ID. I'd just rather be safe than sorry.

Their mom (my cousin) is doing well. Her injuries are not nearly as severe as the doctors first thought (she just has a punctured lung, broken leg bones, and minor internal bleeding which stopped right away). They are weaning her off of the vent, and she is awake and responsive. Her parents are with her now, and they said it does not appear like she has any brain damage. They are hoping to move her stateside sometime next week .

Sean (2 years old) has had a HUGE breakthough recently. He started talking! Prior to going gluten-free, he had not spoken or attempted to speak at all (he just grunted or used simple signs before). Well, last week he walked into my room, pointed the light, said "light" and then smiled and ran away. He now points out every light he sees . He has also started to babble and yesterday he said "Hi Dani" as clear as day when I picked him up from pre-school. I am so proud of him!

Court went great!

My parents were given custody (which is what we wanted, since I'm really busy). Since I still live at home, I see them all the time and the boys don't know that anything is different.

Their dad was ordered to fully reimburse me for all of the kids expenses, so I should get the $ soon.

The best part is that his visitations were reduced to supervised vitits one day a week for 3 hours. The 4 year old is so happy that he doesn't have to see his dad all the time. I wonder why

The boys have not gained any weight recently, but some of their other symptoms have disappeared. No more bed wetting and night terrors!

My mom may be popping on here at times to ask questions. She's familliar with celiac, but she's having a hard time finding kid friendly gluten-free recipes.

On a sad note, the boys mom was injured in Iraq and has been sent to a hospital in Germany (I believe). She's unstable right now, so they will be keeping her there for at least a few weeks, after that she'll go to a hospital in the US until she's completely better. If all goes well, hopefully she'll be home in a few months.

I just read in a People type magazine that Gwyneth Paltrow is following a gluten free diet to lose baby weight. Maybe she always does?!

I read that too!

hmmm...

The boys had a drs appt today, and we got good news.

Sean (2 years old) had gained 3 lbs, and now weighs 22 lbs and is 33 inches tall !!!! He now outweighs Matthew (who is 3). Matty still weigh's 19.5 lbs, but he has grown 1/5 of an inch. The doc said that's good news because it means he's getting more nutrients.

Nicolas hasn't grown or gained any weight, but he's much happier most of the time. He even made his first friend at school. I'm so proud of him (and the other boys).

The doctor was so impressed with their postitve results that he is going to write a letter to the judge stating that their father is endangering their well being by feeding the gluten during his visitations (although their dad hasn't been taking them for visitations lately because he says he's too busy to see them).

We go to court next week, so hopefully everything will go well.

Even more great news is that the boy's mom will be coming home from Iraq on October 7, which is 1 month sooner than expected.

We are celebrating everything by having gluten-free/df cake tonight for dessert!

I'm part of the mono party!

I had mono when I was both 5 and 6, and I started having problems not long after that.