A Little Overwhelmed

[Ian's mom]

Hi all

My 5 1/2 year old son (Ian) starting complaining in early November that he had "burning" in his belly - we took him to our family doctor - who is a DO - who I love and trust - and he said it sounded like acid reflux - we gave him zantac for two weeks and all seemed great - we went to Disney shortly after the 2 weeks of treatment and no relapse - we thought it was a virus and it was all done. Then about 3 - 4 weeks ago he started complaining that he was feeling sick sometimes and if he layed dow or drank water it got better - so I was getting ready to call the doctor and see if we should put him back on zantac and getting ready for school on Thursday morning - he got sick - just once and seemed fine after - we could nt take him to school, so I took off from work and we went to he doctor. The doc checked him out - asked tons of questions and decided it sounded like acid in the belly this time - try zantac again - That was Thruday - everday until Monday everytime he ate BREAKFAST (usually cereal or egg sandwich) he would get sick once and be fine the rest of the day - so off to the doctor again - this time he said no more guessing - blood work - so a few days later I got a call saying he had an emzyme that would suggest Celiac - but I shouldn't hope on the web and google it cause I would just make myself crazy (he knows me sooo well) - so of course I got onthe web and googled it and I am trying real hard to keep my senses about me - we have an appt witht he specialist Feb 7 - the earlist - but inthe meantime I am trying to feed him gluten free - 1 meal I did not and he got sick - so I guess my question, after this long winded post is - HOW? Is gluten the only work I am looking for or is wheat flour bad too? I went tot he grocery store last week and left in tears cause the only thing I could find him was a loaf of bread - one stinking loaf of bread! I just had no idea what to look for - we are going to Wegmans today - they advertise in an email my girlfried forwarded to me that they have a whole gluten free section - I am hoping I wil have better luck there - so pass me any tip or tricks you have - please!

Thanks, Lisa

[JennyC]

The "gold standard" for diagnosis is a small intestinal biopsy. If you want to be sure that you get an official diagnosis, then you must keep him on gluten until the biopsy is completed. That being said, no one told me that in the beginning and I took my son off gluten one month before we saw the specialist. Without a biopsy and gluten challenge he would not confirm that my son had celiac. Many think this way, but fortunately many are slowly changing their minds about diagnostic techniques. The celiac blood panel (specifically IgA tTG) is very specific for celiac disease and false positives are extremely rare.

Your son must avoid anything with wheat, barley (malt), rye or mainstream oats. There is a great list of forbidden foods on celiac.com. For a while I carried it in my purse. There are many things your son can eat but it takes time to adjust and figure everything out. Many mainstream companies will list their gluten, like Kraft & General Mills, so all you have to do is read the ingredients and if you do not see the words: wheat, barley, rye or oats, then it is not there. (Other manufacturers can hide gluten in ingredients like natural flavors, spices or flavorings.)

Companies that will not hide gluten in other ingredients:

Open Original Shared Link

Here are some of our staples:

Heinz ketchup

Ora-Ida fries (golden, fast food, steak and crinkled)

Yoplait yogurt

Philadelphia cream cheese

Cheese

Pop secret popcorn

Terra or Kettle chips

Barbara's cheese puffs

Pirate booty

Hormel and Oscar Myer meats

corn tortillas

Jello or Kozy shack pudding/jello

Trix (read the label every time!)

cocoa/fruity/berry pebbles

Dora stars cereal

Pamela's baking mix, wheat free bread mix, and chocolate cake mix

Glutino crackers and cookies

Ener-G wheat free crackers

Blue Diamond nut thins

Envirokids cereal

Whole Foods 365 organic Cocoa comets

Health Valley corn/rice Crunch-em's (like chex)

Bell & Evans chicken nuggets (Black box)

Willshire (sp?) corndogs and dinosaur shaped chicken nuggets

Kinnikinnick pizza crusts, cookies, doughnuts, etc. (Very good. You might try their bread. $10 flat rate shipping.)

Tinkyada pasta

Classico pasta sauces

Kraft cheese packets (not noodles) from their mac & cheese

I hope this gives you a good start. I know how hard it is in the beginning. Remember you can put your son on a gluten free diet without the permission of any doctor if you feel it's necessary.

[Ian's mom]

Jenny - thank you! That is more information than I thought I would get altogether - thank you! I am leaving for the grocery store within the hour and I feel much better about going!

Thanks again - this info is priceless!

Lisa

[Ian's mom]

I am sitting here thinking about what you said and how could I ever start him eating gluten again when I know that he gets sick everytime he eats it - that is really harsh! I do understand the need for it in the body to show up on the test, but man - that is not fair to a little 5 year old who keeps asking "why is this happening to me?".

Sigh - I am going to go against the grain and keep him off of it!

lisa

[Darn210]

Ian's mom . . . Wegman's is suppose to be fantastic . . . extremely Celiac Friendly!! If you want some good Wegman's advice, I suggest you PM blueeyedmanda. She's their number one fan!!

[JennyC]

Jenny - thank you! That is more information than I thought I would get altogether - thank you! I am leaving for the grocery store within the hour and I feel much better about going!

Thanks again - this info is priceless!

Lisa

Your very welcome. I remember how hard it was in the beginning. Before you know it this will all be routine. I suggest you search this site for topics on cross contamination though. That is another thing you must be conscious of.