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dreamindarlin

New Here....just Found Out Today...

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:( Until today I had never heard of this disease. I think I'm still in shock from the doctors appt today. Here is a little background.

About 2-3 weeks ago I took my 6 year old son to his peds dr. He had a fever, vomiting, stomach pain, and diarehea (sp?) Doctor sent us home and said it was a virus or early appendicitis. That was on a Friday. On Monday he was so sick and threw up blood. I took him to the ER. They did a CAT scan and told me he had intussesption (One part of his colon was basically slipping into another) They admitted him and he spent 4 days there. They did an endoscopy and the doctor told me it was normal except for some inflammation and they took some biopsies. He seemed to be doing better we came home and saw the doctor today. My son's biopsy came back positive for Celiacs disease. BUT,

his blood test were negative for it. The did more blood work today and are looking at 3 different markers. In the meantime he is to start the gluten free diet and the will recheck his blood in a month. He also scheduled him for a bone density scan this Friday.

I have been reading and reading trying to learn all I can about this. I keep crying about it........what about his bday cake? No cookies, no pasta, pizza. Seems like everything is a no no. The doctor also told me Celiacs causes brittle and weak bones thus the reason for the denisty test and can cause him to lose teeth?

My husband is all for a 2nd opinion and there are no other specialist around here. But I am willing to drive.

Sorry to make this so long Im so scared and needed to vent. Any advice or info you have I would appreciate.

Thank you

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:( Until today I had never heard of this disease. I think I'm still in shock from the doctors appt today. Here is a little background.

About 2-3 weeks ago I took my 6 year old son to his peds dr. He had a fever, vomiting, stomach pain, and diarehea (sp?) Doctor sent us home and said it was a virus or early appendicitis. That was on a Friday. On Monday he was so sick and threw up blood. I took him to the ER. They did a CAT scan and told me he had intussesption (One part of his colon was basically slipping into another) They admitted him and he spent 4 days there. They did an endoscopy and the doctor told me it was normal except for some inflammation and they took some biopsies. He seemed to be doing better we came home and saw the doctor today. My son's biopsy came back positive for Celiacs disease. BUT,

his blood test were negative for it. The did more blood work today and are looking at 3 different markers. In the meantime he is to start the gluten free diet and the will recheck his blood in a month. He also scheduled him for a bone density scan this Friday.

I have been reading and reading trying to learn all I can about this. I keep crying about it........what about his bday cake? No cookies, no pasta, pizza. Seems like everything is a no no. The doctor also told me Celiacs causes brittle and weak bones thus the reason for the denisty test and can cause him to lose teeth?

My husband is all for a 2nd opinion and there are no other specialist around here. But I am willing to drive.

Sorry to make this so long Im so scared and needed to vent. Any advice or info you have I would appreciate.

Thank you

Welcome. You've found a very supportive community here.

If your son's biopsy was positive he has celiac disease. Bloodwork is often falsy negative. But the good news is it's not the end of the world and he can live a perfectly healthy and happy life and he can eat cookies, cake and pizza!

I suggest you start here and us as many questions as you need.


---------------------------------

MP - celiac for 10 years

 

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It IS overwhelming at first.

If his biopsy was positive for Celiac, he has Celiac. The blood tests are less sensitive than the biopsy.

There ARE alternatives - he can still have beautiful birthday cakes, spaghetti and meatballs, and Friday night pizzas. I promise. They are just made with different ingredients.

There is hope - hang in there.

Read the book listed in my signature - by a leading Celiac expert.

Hopefully this will make your life easier with food label reading ---

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." http://www.glutenfreeindy.com/foodlists/index.htm This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

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Many of us have dealt with the shock that you are experiencing now, with with ourselves or close family members.

I too, came home from the GI and looked it up on the Internet. I found this site and I haven't left. This place and the good people here will get you through this.

Celiac can be diagnosed by three means: 1) blood testing; 2) endoscopy/biopsy; 3) positive dietary response. Other than the positive dietary response, testing is not as accurate as we would like. But, I believe that the envelope for a positive diagnosis range is too narrow.

Your son does have Celiac according to his biopsy. He does not have to have surgery, nor medication to fix this problem, just a change in diet. Birthday cakes, pizza, grilled cheeses are still available with just a small adjustment. And, how lucky you are that you found an answer so quickly before other associated illnesses effected his young little life. Many people here have gone years and years suffering before they recieved a diagnosis.

Also, please know that the tendency for Celiac is inherited. You might find that others in your family has similar issues, as well as you or your husband.

The diet can be tricky in the beginning, but there are many of us who will walk you through it.

It's not the end of the world, it's the beginning. ;)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Welcome!!

I KNOW IT FEELS LIKE IT NOW.....but it is far from the end of the world. To me the end of the world would be for me to lose my hands or my vision (I am an artist). Giving up gluten.......a piece of cake! Cuz.....I can eat cake all I want. I can buy pre-made gluten-free cake that is super yummy. I can buy things like Pamela's mixes that are super easy to make. Or I can get all fancy and bake from a recipe. I can have chocolate cake, carrot cake, yellow cake, lemon cake....did I mention I CAN HAVE CAKE!!

And so can your son. It take a few months to get the swing of things and learn where to buy what you need. But soon enough it will be second nature. And you are SAVING YOUR SON"S LIFE!! How awesome is that??? With a dietary change he can have a perfectly normal (and likely more healthy) life.

This forum is amazing and you can come in here anytime of the day and ask a question and you will likely have an answer within hours.

***Let me add that I am grain free right now. And today I had almond crescent cookies that taste like the real deal. I made them myself with almond flour. LIMITATIONS are only in your mind. It is a REALLY BIG World out there and were are here to help. :)


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Thank you all for all the info. The doctor did say that after we do a repeat on the blood work if his markers were still the same there could be something else going on but said he didn't want to "overwhelm" me today and we would talk about it at the next appt.

I was raised in the south and know how to cook anything breaded and fried so this will be a new experience for me.

I did go talk to his teacher/principle, and cafeteria manager at his school. They had never heard of it before and said basically there wasn't going to be much choice for him except for salad and fruit and veggies. She said she breads all the meats.

Did anyone get a 2nd opinion? My husband thinks its a good idea I just don't know.

Another question.......he loves McDonalds like all kids. We went today and they made him a cheeseburger minus the bun and he had fries. In my paperwork from the doctor on one page it says potatos and fries are fine but on another page it says be careful of fries?

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McDonalds fries have gluen. :(

It is a new world for you and your family and there will be challenges. But keep your eye on the prize. A healthy little boy. A second opinion is never a bad idea, but keep in mind that bloodwork is notoriously inaccurate in children. The biopsy says it all.

You might also need to go dairy free for a few months until his little villi heal and he can produce lactase again. The tips of the villi are damaged and they are the ones that make us able to digest milk.

Im southern too. :) You can bread things with gluten-free flours or cornmeal. Porkchops with cornmeal are yummy.

Maybe your challenge will be to make yummy gluten-free hushpuppies and then post your recipe in here for us to drool over. But get the basics down first.

Fresh meats, veggies, fruits, nuts, eggs, rice, potatoes, plain spices. This is a good start.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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It is my understanding that McDonalds fries are okay. But, I know that is a big debate ... My son eats them without problems and so do I.

When my son was dx it felt like the end of the world. I spend many months in mourning. I was mourning for our old carefree life. But, when I saw the awesome results from the gluten free diet I snapped back into reality. My son was very tiny. He is 8 and wore a size 4. He was barely 40 pounds. He has been gluten free since March and has gained 12 pounds. He used to have terrible leg cramps every night and he hasn't had any since going gluten free. He used to have a BM once a week and that was a huge, painful ordeal. He goes everyday now. His self esteem has soared because he is catching up in growth to his friends. He is now strong enough to play sports. He played baseball over the summer and now he is on a bowling team. He has a blast. I now think that his Celiac dx was the best thing that could have happened. I can't even imagine what his health would be like right now if he hadn't of been dx. So, it might seem like a low time right now but you have to be positive. Be thankful that you have the dx and your son can begin to heal.


Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

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McDonalds fries have gluen. :(

.

The Celiac Disease Foundation, the Celiac Sprue Association and The Gluten Intolerant Group have independently tested McDonalds French Fries and the testing showed no significant levels of gluten. There is a risk of cross contamination. BUT, this is a discussion for later and no need to overwhelm dreamindarlin.

Some choose to eat McD's Fries, others don't. I believe it's a personal choice.

Yes, it would be WISE to be tested. Continue to eat gluten until all testing is finished.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Just wanted to add...this the the panel that your doctor should order to test for Celiac Disease:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

...yep, all of them. ;)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Hang in there. It is a huge thing to hear but so very manageable. If you like to read, I seriously suggest picking up Dana Korn's Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Children.

There are really great gluten-free substitutes for all those foods you mentioned.

It takes a couple of months to figure all of this out but after that you're going to be a pro. I didn't believe it when people told me that but it is true.

Also, have everyone in your family tested. After my daughter's diagnosis, we found out I have it, my gramma had it, and my baby has it.

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The Celiac Disease Foundation, the Celiac Sprue Association and The Gluten Intolerant Group have independently tested McDonalds French Fries and the testing showed no significant levels of gluten. There is a risk of cross contamination. BUT, this is a discussion for later and no need to overwhelm dreamindarlin.

Some choose to eat McD's Fries, others don't. I believe it's a personal choice.

Well said, Lisa. There is plenty to read here about McD fries, but it is way down on the list of priorities for someone new to the diet. :blink:

dreamindarlin, welcome to the board. There is a big learning curve, but you will find answers and support here.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Thank you all so much for the info and support! I went grocery shopping and found quite a few gluten free items!

But.........I need your help!!! What do you pack for lunches at school? The school my son attends has never heard of celiac's the only choices he will have is salad or veggies and a piece of fruit. He can't have bread so sandwiches are out.....so what do you pack?

Thanks!!!!!

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Welcome dreamindarlin!!! You have found a wonderful resource and lots of new friends to offer advice and share their experiences!!

My daughter was diagnosed at 6. It was a complete shock to us also. I had heard of Celiac disease but it was not even mentioned as a possibility until I went in for her post-endoscopy appt and received the diagnosis. I couldn't believe it. We did get a second opinion. He didn't order any additional tests, just talked to us about the tests that had already been done (he had copies of all the results). His opinion was . . . Wow, I would never had suspected Celiac based on her presenting symptoms, but the tests say she has it and it's rare for a false negative. He recommended we challenge her at a later date . . . which actually happened accidentally about 8 months later and her reaction was the final proof. If you need to get a second opinion to help you come to terms with it, then do it.

I also just want to tell you not to be too hard on yourself when you mess up . . . because you will . . . it's all about the learning curve. You'll get the hang of it, and it will happen surprisingly quickly.

We pack all of my daughter's lunches. Our accidental challenge was actually the result of the one school lunch that was deemed safe but the supplier made a product substitution.

Her lunches contain stuff like cheese sticks and loose ham, peanut butter and nutella on a cold pancake, peanut butter on a corn thin (like a rice cake but thinner), mac & cheese or hot dog in a thermos. I've also seen the suggestion of ham/tuna/chicken salad scooped up with tostitos but my daughter is not into those yet. The rest of the lunch is the same . . . fruit, chips, pudding, (gluten-free) cookies, etc.

In my opinion, sandwich bread is the hardest thing to substitute . . . it's not bad toasted or fresh out of the oven. Everything else . . . cookies, cakes, muffins, etc . . . we (the whole family) is perfectly happy with the substitutions. Just like the gluten stuff . . . made from a mix is better than the prepackaged and made from scratch is best of all.

Some good basics:

Tinkyada Pasta

Pamela's Pancake/Baking Mix (I use this for pancakes, and for coating my fried chicken)

Rice Chex (besides eating as a cereal, this is what I use in my meatloaf)

Bell & Evans gluten free chicken nuggets or tenders (for those nights you don't feel like cooking)

Van's gluten free (toaster) waffles

Let us know what your son is missing most and we'll be glad to help.


Janet

Experience is what you get when you didn't get what you wanted.

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There are many, many, many recipes for bread on this board, there are many special order breads you can buy, and there are mixes that you can make. Some stores carry some gluten free breads. As with many gluten free products, there is great variability in the quality and the taste. Some are wonderful. Some are terrible.

There are lots of flours that are not WHEAT flour. Rice flour, corn starch, tapioca starch, potato starch, bean flours, etc.

Just one example: http://www.glutino.com/sale_sheets/GFP/Glu...try%20Mixes.pdf

Look through the receipes section, as well as the food section, and you'll see many other great brands. :)

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Thank you Janet! That is alot of helpful information!!! My son is so picky.....he doesn't like peanut butter. But he does love hot dogs. Does your daughter eat them cold? I don't know if my sons school would heat them up or not.....

What is your feelings on oats? From what I've read there is alot of controversy on this. I read one place that oats were toxic for celiacs but another site said they were perfectly fine.

You guys dont know how much better you all have made me feel. We will survive and get through this. Thank You

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Also best to be on the diet awhile before you try the gluten-free oats. My daughter's doc gave the OK at the 6 month mark. And when you try it, try just a little.

Also forgot to mention . . . you should send an "emergency snack pack" to school for his teacher to have on hand. Our school doesn't allow parents to send stuff in for birthdays, but they still seem to have food brought in for one thing or another. If something gets passed out for everyone (one time it was the art teacher passing out goldfish crackers), then my daughter gets something from her snack pack. It's got a couple of pkgs of chips (lunch size), tootsie rolls, fruit chews, smarties . . . I've told her to pick something that is comparable to what the other kids are eating, but I'm sure she's picking whatever she wants ;)

I also told her (warned her), quite often in the beginning, that sometimes we would get surprised and not have a substitute treat with us but she would always get something when we got back home. And believe me, she remembers!! "Mom, everyone got an Oreo today and I didn't. I think I should get a bowl of ice cream now." :lol: Oh yeah!! She works it!!

Some schools will heat stuff up, others won't. I don't even try (it's a fairly big school . . . lots of kids to get through the lunch line). If I was going to, I would probably go through the school nurse, she has let me use her fridge/freezer at times and I think she actually has a microwave in her office. Invest in a good thermos. I initially got a store brand one because it was cheaper but it just didn't work that well so I ended up buying the one that I should have in the first place, a Thermos brand food jar. It has a large opening so that you can eat out of it. Works well for mac&cheese and leftovers (if it was something they would eat the first time around, that is).


Janet

Experience is what you get when you didn't get what you wanted.

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We use Gluten Free Pantry Sandwich Bread mixes. The regular mix by itself is good for sandwiches and freezes pretty good. We also add cinnamon and raisins and drizzle it with a glaze made of powdered sugar and milk for a dinner bread/dessert.

Also, Pamela's pancakes make excellent sandwiches. My son LOVES PB&J on Pamela's pancakes.

For lunch, get a good thermos. You can pack rice dishes (my son really like fried rice), mac & cheese, hotdogs, soups, stews, stroganoff, spaghetti, etc.

Our whole family went gluten free inside the house when my son was diagnosed last Dec. It really is doable and after the learning curve is just fine. I had my son's birthday party this summer and served everyone gluten free cake and not one person knew any different. Kinnikinnick makes great mixes. I doubt anyone would be able to tell the difference from Pillsbury. We also like Gluten Free Sensations chocolate chip cookie mixes.

For pasta, try Tinkyada or Quinoa. Tinkyada seems to be a very popular favorite around here. We personally love Quinoa and I'd eat it over our old spaghetti anytime.

Pizza is definitely doable. I used to be the world's worst homemade pizza person. No more! In fact, my mother and I went to California Pizza Kitchen last weekend and I barely touched my pizza. I told her I'd be making good pizza later that weekend - gluten free pizza! We do pizza night once a week - it's pizza and a movie night (we eat the pizza parked in front of the TV watching a movie).

The hardest part is really outside of the house. One thing we do to help make it easier is replace with better. It's actually one of Danna Korn's strategies. The basic idea is that you one up the gluten item. So you replace a gluten item with something a little better in a gluten free variety. School book awards were tough for my son. If they read so many books they get a coupon for pizza hut. Well it bummed him out a little until I started trading him a Lego set for a pizza coupon. :rolleyes:

The treat bag at school is really important. At least at our school food seems to always cropping up. Many of us have sent a bag of goodies to school for "emergencies." Also try to get a list of the other kids' birthdays from the teacher and send in a treat on those days. And let your son pick the treat - my son's favs are Reese's PB cups, choc chip cookies, crispy rice cereal treats (you can buy a gluten free version of rice krispies that tastes just like Kellogg's), brownies, and cake.

This is NOT the end of the world. Your son will be more than fine. He'll be terrific! Just give yourself a little time to learn and realize that the first few weeks/month are the hardest. After that it gets so much easier. Like anything new, it takes a little practice and patience but you'll get it.

Welcome to the club!!

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My favorites:

Chocolate cake: http://www.recipezaar.com/209764

So good you don't need frosting

Waffles: http://www.recipezaar.com/312803

Wonderful plain, pop in the toaster to reheat.

White bread: http://www.recipezaar.com/312482

Cut it into 4 squares then turn them on end and slice with a thin knife to get 8 slices. I just tried it today and its easy and tastes really great.

Also check out the thread on here called "Food Ideas"


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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Mac & Cheese - Some here use the packets out of regular Kraft Mac & Cheese blue box (I'd make sure it's sealed well before you open it (so you know nothing got in) and wipe off the package a little before you open it. Also, some places sell just the cheese (I think it's in the popcorn section as they sell it as a popcorn topping). I've not tried either.

We've made homemade once with velveeta - I think I followed a recipe on the box and just used gluten-free pasta.

There's a box (similar shape to Kraft blue box) of a similar type product by Annie's I think (it has a bunny on the front if I remember correctly). We personally didn't care for it much, but I know others here like it.

Mac & cheese is my personal lazy meal - I buy Amy's frozen mac & cheese (be sure to get their gluten-free variety, not their organic variety (which is gluten noodles)). I use it for those time crunch times. I micro it in the morning and put it in a thermos.

My son also likes noodles and Betrolli's alfredo sauce (not exactly mac & cheese, but kind of...). Bertolli's is a regular brand of sauce. I noticed last time I bought some that there were some cheese sauces now at our grocer in the same section (spaghetti sauce). I didn't check the labels, but they might be another source for the cheese part of mac & cheese.

All this assumes you aren't trying dairy free. Our ped GI told us to hold off on trying dairy free to see if it was necessary. We did end up trying it after about 3 months for about 6 weeks, but I don't think his issues had anything to do with dairy. But that's a whole nother topic!! :o

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