Hello all, my 1 year old was diagnosed about a month ago and my wife and I were in complete shock. After the endoscopy came back clear, our doctor mentioned the possibility of celiac when the biopsy was studied. “All signs point to celiac,” they told us. Our research told us this was a genetic disorder and because no body in our family (both sided) has ever been diagnosed, we ruled that out from the start. Now we know one of us might be caring it and should be tested. Our problem is that our son can not tell us how he feels and if he hurts.

Does this intolerance cause pain?

Is the pain immediate or does it take a couple of days?

It can cause pain but not always which makes it tricky with a child that young. A lot of people get stomach pain/cramps, but not everyone. Most parents will notice a difference in bowel movements and/or behavior. You'll probably have to go by the symptoms he had that lead you to seek a diagnosis.

I have a 1 year old myself who I suspect may have celiac disease! However, I don't have it but my mother does. And we suspect that my grandma had it. I read somewhere that if a parent or grandparent is diagnosed that the child and grand child has a 1 in 20 chance of getting this. The reason I suspect that my little one has it is because her immune system is really bad. She is constantly picking up illnesses. More so than the average child, her belly also bloats really bad from time to time, and she also has a lot of skin problems stemming from psorisis to severly dry skin. These are all symptoms associated with this disease So, here in a few I am going to take her to the doctor (currently I think she has Rotovirus) and while I am there I am going to discuss a blood test or a refural to a gastroenterologist for testing. It can't hurt with our families history.

So from you post, I see that they did a endoscopy. I didn't know that they could do that to a child so young. Thats wild. Best of luck to you and your family.

Jessica

Just because no one in your family was diagnosed, doesn't mean that no one in your family has it. 1 in 133 Americans have Celiac and yet 97% of them are undiagnosed. Celiac symptoms range from debilitating to no overt symptoms (called silent Celiac). All first degree relatives of a dx'ed Celiac are recommended to have the full Celiac panel run. It "runs" in families because there is a genetic link to Celiac. The two main Celiac genes are HLA DQ2 and HLA DQ8, which about 30% of the American population has (one or both). Just having the gene alone does NOT mean that you have Celiac. About 98% of diagnosed Celiacs have one or both of these genes.

The statistics for a family member having it are:
Group Prevalence (from a 2003 study by Dr. Alessio Fasano)
First degree relatives 1 in 22
Second-degree relatives 1 in 39
Symptomatic patients 1 in 56
Not-at-risk individuals (overall prevalence) 1 in 133

Check out the book listed in my signature...it is the best resource out there.

Hi!

I just came across your post. I would recommend you go to the Parents of Children and Babies Message Board here on Celiac.com, it is great to talk with other parents about your concerns, questions, etc. My husband and I have two small children and they have both been diagnosed with celiac disease through biopsy. Our oldest is now 4.5 and she was diagnosed about a month before she turned 3. Our youngest is 20 months and he was just diagnosed about 4 weeks ago. It was so much easier with our daughter, even though she was barely 3, she could talk and tell us how she was feeling. Her tummy certainly hurts when she gets even a spec of gluten but more importantly is her behavior. This is very common in children with celiac disease. Their behavior is terrible when they are "glutened". I would really recommend you go to the Parents of the Children and Babies part of this Message Board, I think you will find it most helpful!

Good luck to you and please know....it will get easier!!!

Dear bchapa,
I have no relatives diagnosed, but my doctor says I am a Celiac. Both of my parents have a history of stomach problems. My father had ulcerative colitis that made his life miserable in his teens and early adulthood. My mother has had IBS since she was a young adult. She also does not tolerate dairy. When I accidentally ingest even a microscopic amount of gluten, I become violently ill. I break out in a sweat, become very nauseous, need to have a bowel movement, begin shaking all over, sometimes my hands go numb, and if I do not get a promethazine down quick enough, dry heaves that make me feel like my insides are emploding start. When I was an infant, I spit up every formula (even the Prosobee) and had to be put on 2% milk at three weeks old. The stomach problems continued throughout my life. Finally, at 24, I know the reason. Here is a list to help you out:
I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!
1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.
2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.
3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.
4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.
Now, here is my list of great things to get you started:
Condiments:
Smart Balance Margerine
Crisco Shortening
Crisco Oil
Pompeiian Olive Oil
Great Value soy sauce
Heinz Ketchup
Lea & Perrins Worchestershire Sauce
Sweet Baby Ray's Barbecue Sauce
Kraft French Fat-Free Salad Dressing
Kraft Thousand Island Fat-Free Salad Dressing
Pace Picante Sauce
Ortega Salsa
All Classico Red and White sauces
All Jif Peanut Butters including Smooth Sensations
Welch's Grape Jelly
Cool Whip
Philadelphia Cream Cheese
Miracle Whip
Daisy Sour Cream (fat-free, low-fat, regular)
Snack Foods:
Fritos
Tostitos
Lay's Original Potato Chips
Cool Ranch Doritos (Nacho cheese has gluten)
Act II Microwave Popcorn
Cheetos
3 Musketeers candy bars
Butterfinger candy bars
Reese's Peanut Butter Cups
Meat and Protein :
Eggs
Great Value Frozen Boneless, Skinless Chicken Breasts
Extra Lean ground beef
Carl Buddig lunchmeats all are safe
Johnsonville Original Bratwursts
Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)
Cereals:
Cocoa Pebbles
Fruity Pebbles
Dora The Explorer Cinnamon Stars
Seasonings:
Durkee Cinnamon-ground
Durkee Ginger-ground
Durkee Chili powder
Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)
Emeril's Essence - Asian, Italian
Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)
Miscellaneous:
Ortega Taco Shells
Starkist or Great Value Tuna
Butter Buds
Great Value Soy Milk
Lettuce
Tomatoes
Apples
Pears
Carrots
Great Value Canned Fruits and Vegetables
Del Monte Canned Fruits and Vegetables
Ore Ida Tater Tots
Ore Ida French Fries
Hormel Chili
Hormel Spam
Hormel Turkey Spam (Oven Roasted and Smoked)
Hormel Beef Au Jus Entree
Hormel Pork Au Jus Entree
Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)
Plumrose Bacon
PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)
Beverages:
Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)
Diet Rite
Folgers Coffees (all including Cappuccinos)
Luzianne Tea (We get decaf)
Arizona Teas
Ocean Spray Cranberry Juice
Some Household Items that are safe include:
Cascade Dishwashing Detergent
All Laundry Detergent
Wisk Laundry Detergent
Dawn Dish Soap (all including the Power Disolver)
SoftSoap Hand Soaps
Murphy's Oil Soap
Hygiene, Cosmetics, and Beauty Items:
Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)
Crest Whitening Expressions Toothpastes
Colgate Toothpastes
Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)
Maybelline (Gluten is clearly labeled when present)
CoverGirl (Gluten is clearly labeled when present)
Wet'n Wild (All except for one of the mascaras)
Olay Quench Body Lotion
Crest WhiteStrips
Colgate Simply White

Here is Cybermommy's List for Toddlers and Babies:
Gerber Graduate Wagon Wheels
Gerber Graduate & Parent's Choice dryed fruits & veggies
I also buy products made by "Just Tomatoes"-these are mostly single ingredient freeze dried fruits & veggies (much more variety) they also have soynuts. I buy them at Central Market but here is company info so you can find how to get them in your area. (209) 894-5371, Box 807, Westley, CA 95387 Our favorites are the Just Peas & Just Blackberries. They are good to snack on like popcorn or to add to salads (Crunchies) They are great for toddlers & easy to carry w/ you. We always have in diaper bag(Church nursery knows not to give her anything that doesn't come from her bag & they clean up immediately after snacks to be sure no stray gluten containing crumbs for her to get)
Mission corn tortillas
Great Value Spaghetti Sause (have not checked all but clearly labeled)
Great Value Mozzarella Cheese (shredded)
Great Value Honey Ham Lunch meat
(I use the above 4 ingredients in a brand new, never used on gluten products, sandwich press)
(You can do the same thing substituting pace picante sauce for spaghetti sauce & add avacado & a touch of salt)
(try penut butter & banana)
Making sandwiches in the press also helps some of those cardboard like gluten-free breads with texture & taste.
Jet Puff & Great Value Marshmallows
Fritos (all flavors)
Lay's Li'mon potato chips
Welch's fruit snack & dehydrated fruits
I use Tinkinyada pasta & or spaghetti squash (the pasta taste better to me but spagetti squash is good stretcher & I can grow in garden.

Most toddlers, kids & yes us adults like to dip. Try celery, carrot & zucchini or yellow squash sticks for dippers & peanut butter or cheese dip to dip in. If your child is to young to actually eat the veggie sticks it is a great teether & they still get some vitamins from it as well as aquiring a taste for it. Remember that your kids want to eat what you eat. You are more likely to succeed in this if you model the eating habits. It took Lyndsee about 2 days after I went gluten-free to realize she can eat anything I can. Now every time I get something to eat she is like baby bird w/ mouth open . She is eating a lot better.
Oh yeah btw we also use Bar-S Franks made with chicken, pork & beef.
They are dirt cheap & toddler friendly.
The accounting and recordkeeping would be a nightmare, hopefully you have a lot of time available to set up a good accounting system and way to keep track of all your receipts. Just go to irs.gov and look for the rules, special forms and all. Oh, and it probably only is available if you spend more than 7.5% of your AGI on it, like other medical expenses.
I hope this helps you!
Sincerely,
NoGluGirl
P.S. You may want to eliminate dairy as well, as many of us are sensitive to casein also.