natalie

I went today and the GI said that I have IBS, Hiatal Hernia and Esophogitis. he said the Celiac biopsy showed only one of three positive tests for Celiac and the Blood work was negative and I should re-test in a couple years and for now take medicine for my allergies which I have been suffereing w/ for two years straight and to take an anti-depressants. He also said no dairy for 2 weeks, only yogart. and to eat enough fiber to get rid of constipation...which I DO NOT have. Confused, stressed, and just want to say screw it all. Thanks for all the input.

Jody.

IBS is usually what the doctor diagnosis when he has no clue. If the biopsy showed Celiac...then you have Celiac. I didn't have positive blood work, but I had a positive biopsy.

I'd get a second opinion if you can.

It is wonderful that he is going to the special Olympics...you must be SO proud. I'm sure he'll be just fine with the meals you sent. The Outback has delicious gluten-free food and we have never had a problem there. Let us know how it went.

I'm sorry that you had that experience. I understand where you are coming from though. It is heart breaking to see your child upset about not being able to have food. We have taken our 3 year old son to one B-day party so far and we brought a cupcake, but he still freaked because the cake was Disney's Cars theme and was beautiful and looked delicious. It made me so sad.

Maybe next time you can make a cake from scratch. It's much cheaper! I converted this recipe yesterday. For the flour I used my trusty mixture: 3 parts white rice flour, 2 parts potato starch, 1 part tapioca flour, and 1 tsp xanthan gum for every 1.5 cups flour. I would also add more chocolate to the recipe, but I'm a chocolate addict! This cake is super moist. It got fantastic reviews on the website. It's worth a try! Duncan Hines creamy home style frosting, except for the coconut pecan flavor, is gluten free and you can also make delicious homemade gluten free frosting as well.

Open Original Shared Link

Hope this helps.

I'm sorry to hear about your son. On my daughters b-day I made a gluten-free Barbie cake with a wilton pan. Everyone loved it.

The reason I didn't make a cake from scratch was because I didn't find out about my niece's milk allergy with enough notice to research a good recipe. I felt overwhelmed making the other dishes for such a large group. Next time I will be better prepared.

You receipe sounds great. What wet ingredients did you use? I have found that adding buttermilk instead of milk makes a cake very moist.

Thankyou for the tips.

Sorry, if this is a grown-up person I respectfully disagree. Umm, I think he should go on ahead and grow up. There are times as an adult when you don't get a big party let alone a cake. So, when you offered to host this lovely meal with all his personal favorites did he say, "No, I think I'd rather have a cake from Kroger." I bet that he didn't. If your mil is in on this I would find her equally culpable. The whole deal seems mean spirited especially considering you were dealing with not one but two children's food issues. And to jump up and leave to go eat it? Aww, is not the same if he couldn't eat on his "real" birthday? Boo-hoo! That sounds like something my six year would say. (Who, by the way, has celebrated his b-day on other days twice in his life without complaint!)

Just my two cents!

This was exactly my thoughts and feelings from the beginning. It was just the way it played out that bothered my hubby and myself. We are an open and honest family, and the secrecy and sneakiness shocked us! It is nice to know that someone else sees it my way. Thanks

I wouldn't take it so hard. Everyone likes a cake on their birthday, it is an expected part of the birthday ritual. So having some tiny hurt feelings over not getting one is normal. It is also normal for you to feel hurt that they all went and had cake together after without telling you, but their reasoning could have been similar to yours - they didn't want you to know and feel hurt because you guys couldn't come and enjoy cake too, your daughter would feel left out. I would call it even with your family and just move on.

I agree with PP - go buy a gluten free cake mix next time. It's cheap and tastes yummy. In fact, actually making the cake yourself gives off the message "I cared so much about your birthday that I made you a cake myself!" And unfortunately yes, your daughter is going to have alot of instances where she has to watch other people/kids eat things she can't. She can either learn to sit and feel sad/left out, or you can teach her that it's ok they are eating one thing, here is your very own special snack to eat. A friend of mine keeps snacks at all of her relatives houses that her son can eat. Ice cream bars, popsicles, cookies, etc. That way if they are at a get together there, if the hostess brings out snacks for the kids, she can bring out his snacks with them so he feels like one of the crowd.

It takes alot of adjustment to get used to being Celiac, especially for kids who just want to fit in with their friends. I'm sorry she is having a hard time right now.

You are right, I'm sure their reasoning was similar to mine. Thanks for the perspective

family is such fun! There will always be some kind of issue with family members who just don't get it! They don't mean to hurt your feelings, but that's family...

I used to make a flourless choclate cake to take to peoples houses. Add fresh whipped cream and fruit. It was to die for! That way dessert was gluten-free and peanut free. A dairy allergy eliminated that option for us. Now I make a "Pavlova" cake. There is a recipe on this site and it is GREAT!

Cherrybrooke kitchen makes great mixes that the gluten-free daughter and the dairy free child could eat and they would love it.

I feel bad for any child who has a severe allergy or intolerance or health issue that makes them different, because being a kid is hard enough soemtimes. I have Celiacs and my kids have severe food allergies, so below is what we do. Sorry to be a little harsh, but their allergies mandate no mistakes or it is a life threatening reaction and a trip to the hospital. Maybe something similar will work for you.

As far as your child not wanting to feel different, I hate to say this, but nip that thought in the butt immediately. It sucks to be different, even for adults, but it is not going to change any time soon. Your daughter is 5 so I am guessing she will be entering school in the fall? School is going to be very hard especially if she gets upset about being different. We go through the same emotions with my daughter , 6, She has a nut allergy. I tell everyone about her nut allergy. She even tells everyone about her allergy. She wears a medical alert bracelet. And she brings snacks or cupcakes where ever she goes. There is quite a bit of food she can not eat and a severe reaction that would send her to the hospital so we don't play around. But she sometimes gets upset and questions why god would do this to her or states very emphatically that she is no longer allergic to nuts. My only response is that god gave her this allergy because he knows she can handle it and he knows she will do something good with it. Maybe she will be a pediatric allergist? Maybe she will find a cure to anaphylaxis? And as far as no longer having this allergy, when her dr says that she is no longer allergic, he will do a challenge in his office. Until he tells her she can eat nuts, she will NOT be allowed to eat nuts.

The only thing that helped at school is a good teacher and a great safe snack box. I make sure her peanut safe snacks are something that the other kids would really want. If there is a food that your daughter really wants, but it is not gluten-free, make it a puzzle that she helps you figure out how to make it gluten-free. We go to chocolate shops knowing that we cannot eat ANYTHING there, but we go for ideas. Then we go home and make gluten-free & peanut safe versions.

If you need some ideas about starting school and making it safe for her, let me know. Our first year was a massive learning experience.

Hi,

Your flourless cake sounds wonderful!

I don't believe that Cherrybrook Kitchens ships to Canada, but I'll look into that again.

My daughter already goes to daycare ( I send all her food) and she handles it very well day to day, but she seems to struggle with birthdays. I do have that " this is how it is" attitude most of the time with her, but I guess I thought the family could rally around and help create a "normal" environment at home. Maybe I have unrealistic thoughts or expectations.

Wow, you have a great attitude about your daughters allergy. What a great way to look at it.

Thanks so much for the support, if I need ideas, I know where to come.

Hi Natalie:

I am so sorry you had that experience. I don't think deep down they meant to hurt yours or your daughters feelings. But you're right - they shouldn't have been so sneaky. My family is not very good at those things either. It usually just ends up with them insisting a little bit won't hurt...

But birthdays are special no matter how old you are. I have never bought a gluten free cake - you're right all that stuff is very expensive. But for all birthdays I always make a gluten free cake, either with a gluten-free mix or from scratch. There is a pretty good recipe for a gluten-free cake on allrecipes.com if you put in gluten free for your search.

I have not had any complaints from any birthday attendees about the gluten-free cake. In fact, most of them say they can't tell. I find that if you add chocolate chips to chocolate cake, it makes them tastier.

When we go to other people's birthday parties that we are not hosting, I always bring my son a cupcake that I made at home and some ice cream in case theirs is not gluten-free.

I don't know if this helps at all. I hope you are able to mend things with your family.

Gina

Thanks Gina,

You are right, they probably didn't mean to hurt our feelings.

I forgot to mention that I had already had a gluten-free cake for my husband on his actual b day. The day of the celebration I made Ken's ( our cousin) favorite dinner and his favorite nacho dip and the ice cream was his favorite. I guess I thought I worked really hard to make him feel special.

I will try adding choc chips to my gluten-free cake next time. I do make an excellent gluten-free cake although, I find it hard to make without milk or dairy ( my niece's allergy). I use buttermilk in my cake to make it really moist.

I always have cupcakes in the freezer when we are not hosting, and I take one along, the problem is she is getting sensitive about being different.

I guess I have to find a way to deal with the celebrations.

Natalie

Hi Everyone,

I was so happy to read this post... I just posted about a family problem of my own.

My daughter has just gotten very sensitive (emotionally) as well. It is a tough one to deal with.

I mostly cook gluten-free foods. I keep regular bread for my son's lunches but that is about it.

We all love the gluten-free pancakes ( El Peto mix is great). Tinkinyada pasta is awesome. At a birthday celebration recently I made this chicken recipe. It was one we made prior to Celiac. Well I made it gluten-free and no one even knew. It was awesome.

I love being able to make Allison feel "normal" at home. I agree with another poster, don't make it seem like a big chore to your son ( even though it can be at times); it will help his attitude.

Good Luck

Natalie

Hi Everyone,

My daughter was diagnosed 1 1/2 years ago. She is 4 now. At first she coped well emotionally, but now she is having a tough time at birthday's etc. Well this past weekend was my husbands and cousin's birthday get together, I hosted and chose the menu. Since they are grown ups we decided to skip cake, there were 14 people and gluten-free cake is expensive. I had decided to make an ice cream cake instead. Well my sister in law just started removing dairy from my niece's diet ( she is 5). I didn't want her to feel left out , so I finally decided on fun popsicles for the kids and ice cream bars for the adults. I made a beautiful dinner, had appetizers, wine etc. Well after dinner everyone jumps up to leave... the place cleared out really quickly. The next day we found out that everyone went back to my mother in laws for regular cake. Apparently my cousin said to my mother in law " I guess I have to make my own cake" My husband and I were upset so we explained the reason that we didn't have cake. It has now turned into this huge family fight. I didn't think an adult needed cake to feel special on their birthday. I feel awful now... completely misunderstood. Everyone thinks we had no reason to feel upset ( even though they were secretive about it). I just don't feel as though my daughter should have to watch everyone eat gluten cake when it bothers her... I thought her family could be her safe place.

Does anyone have any thoughts? Are we wrong to feel hurt? How do everyone else's family approach birthdays?

Hi,

We just visited disney in May. I would recommend taking a thermos along. I found that they were accomodating, but they would not heat up any food for my daughter even when I was purchasing other menu items from them . Cinderella's castle was the highlight for us... the meal was fantastik. Le Cellier was wonderful if you like steak and ceaser salad.

Hi Everyone,

I am due to see my doctor on Tuesday. I will ask her about it then. I have done some reading that does say swelling is common with food allergies.

When should I see an improvement in my leg and ankle swelling? I have been gluten free for 2 weeks now.

Thanks

Natalie

Hi,

My daughter presented with constipation and vommiting. At first the doctor also thought Hirshprung's as well. Her ultrasound showed a tremendous amount of gas which was causing her pain. It turned out to be Celiac, not Hirshprungs. Even a year and a half after her diagnosis I have her on lactulose which helps keep her bm soft. It is not a laxative...the bowels do not become dependant on it. I just find that she can get constipated so easily and that really helps.

I hope all goes well with your daughter.

Natalie

In my area ( Ontario ) certain ice creams are gluten-free, but the icing they use to decorate is not.

Wow! Thank you everyone. I don't feel alone anymore.

I did sort of confront ( in a nice way) my mom. I think she is in denial about possibly having it herself. I also explained about the aches and pains I have that I now realize are due to Celiac. She was pretty good about it.

My sister is my sister. She is a police officer , and has that tough skin. I think she worries about having it as well. She did mention that she may get the scope one day for the sake of her one year old daughter.

It was nice to hear everyone's stories.

Natalie

Sorry to hear you are going through that. Glad to hear you got the scope done though Keep yourself and your family healthy and don't worry about the sister and mom issues.

As for family...it is impossible to understnad what they are thinking. Sometimes I think that they think Celiacs is contagious. Other times it seems like the parents feel guilty that they never knew or did more to see that their child was sick, and now as an adult you find out you have this disease and they think they are bad parents or something.

My family reacted similarly. Mine meant well, but they just don't get it. The fun part is they get VERY UPSET when you point out symptoms in family members alive or dead. Its kind of a "How dare you same that diseae came from my side of the family!" approach. The part that is hurtful is that my family probably would have reacted better if I announced I had some terrible disease or cancer (not making light of cancer). Even now, almost 4 years later, they still bring food into my house that is not allowed due to severe peanut/treenut allergies, I still have to get what food they have on them when they get off the plane and make them throw out the nuts and wash their hands and face. They never understand or ask questions about what I can or can't eat or why. It's like they are scared.

As for friends, sometimes friends make the best and most loving family any of us could ask for....

Try not to be too upset with your family, they will eventually come around and things will get back to normal, or you will know that your health and the health of your family is more important.

Thank you gfgypsyqueen,

I agree about the cancer comment. I said the same thing to my husband, I would get more support if I had that. You are right about keeping my family healthy. That is the most important thing. I guess I just have to be patient and maybe they will come around.

Natalie

Hi Everyone,

Just wondering if anyone else's family starting acting weird after diagnosis?

My daughter was diagnosed 1 1/2 years ago. She was 2 at the time, malnourished, vommiting etc. Once diagnosed I read every book on celiac that I could find. As soon as I started reading I thought I had it. Not the same symptoms as my daughter, but headaches, depression, rashes that never go away, hair falling out etc. Last summer I had the genetic test for my husband, my son and me. Well it turns out I am DQ2 and DQ8. In December I decided to try Entrolab after a negative blood tests. My results are posted below. My doctor had concerns about one number in the celiac panel so she referred me to a GI doctor. He decided to do a scope ( even though he didn't think I had it), sure enough, he was able to tell at the time of the scope and took several biopsies ,complete villi damage.

Anyway, all of a sudden my mother who couldn't call me enough, barely calls and I can tell my sister thinks I am out to lunch. I haven't talked alot to them about my symptoms and I haven't pushed the celiac on them. I can't believe that I feel more supported by friends then family. Why are they acting so strange. They seem to think I shouldn't have gotten the scope. Even with the doctor's results, they don't seem to take it seriously.

Any thoughts?

Natalie

Yes, yes, yes!!!! I have had headaches my whole life. I remember being in public school going to the nurses station. I would lay in a completely dark room, the pain was excruciating. Eventually I would vomit fall asleep and feel a little better when I woke up. This all happened while I was 6+ years old. The headaches were a major symptom of my celiac.

Natalie

Crushed Ice was the BEST! I even craved cool air during my pregnancy WEIRD. I would get in the car and turn the air on high and just soak it in (obviously I was preg in the summer). I wasn't even hot.

Shelly

When I was pregnant with my first I took a picture of my husband at the breakfast table eating his cereal... he was wearing his parka, a winter hat and mittens ( in July) because I had the ac so cold. I used to be so hot!

I live in Canada as well. In my area ( Waterloo Ontario) I waited about 7 months to the the GI doctor and then 4 weeks to have the scope. It was well worth the wait because my scope was positive. Because my daughter was diagnosed at 2 with celiac the doctor took me a little more serious. I had all negative blood work except for the Igg was slightly positive. Do you have anyone in your family who has celiac?

Have you tried the Entrolab test? I had that and my numbers were through the roof, I think that those results helped the GI doctor to do the scope.

Good Luck

Natalie

When did he start losing weight? Maybe he has some of his intestines working properly, therefore absorbing the fat. Maybe severe damage hasn't occured yet. I would start the gluten-free diet because his numbers are high.

Natalie

It's nice to hear I am not the only person with negative blood work and a positive biopsy. I am concerned about my father who has suffered from severe depression, balance issues, white matter on the brain ( they are calling it early dementia), losing weight, upset stomach. They have done the celiac blood work after I insisted, it came back negative. I would like to get him to have the scope but here in Canada you need a referral and I can't get him to leave the house (depression).

Natalie

If you really have a casein intolerance, it's forever.

I say it like that because I had a 32 on the Enterolab test. I went off dairy for six months and saw no improvement whatsoever. I went back on it and saw no difference at all.

I would definately go dairy free for a time, but at some point you could test it to see if you're really casein intolerant. Tests aren't perfect.

Thanks Carla.

Do you know if doctors can do other tests for casein allergies?

Natalie

you definitely need to eliminate dairy from your diet. you tested positive for it through Enterolab.

Does that mean forever, or just until my intestines start to heal?

Natalie

Good luck to both you and your son. I'll be thinking of you.

Natalie