New Here, Do We Have Celiac?

[misgiss]

Okay, here's the situation. 3 y/o boy (3 ft. & 29 lbs) has had food allergies since 9 mo. Tested positive for wheat, dairy, eggs (whts & yks), almonds, peanuts, pistachios, cashews, blueberries, goat's milk. And I think a few more things I can't remember. He was recently re-tested and still allergic to everything except egg yoks. Oh, he also tested positive to soy but at the time we were dealing with a reaction in his skin and soy didn't make him hive up so we thought he wasn't that allergic. The score for it was really low.

Anyway, he has never had solid poop, ever. But lately it has been worse. It's diareah every single time. With a little bit of blood and some mucus too. We've talked with ped about it MANY times and he just tells me that it sound like it's a dairy allergy...DUH!!! But that's it.

I've never heard of Celiac until today so I'm a rookie. I don't know anything about it. I would love as much info as possible.

Now an even bigger problem: we are living in Japan until Oct. so I'm not sure about seeing a doc here. Plus the language barrier would probably make it pretty hard to communicate clearly all that is going on with him.

We have decided to eliminate soy first to see if that helps. If not we will move on to anything wheat or gluten. Can someone tell me about gluten?

I'm not sure what else to say except that I want to get my little boy all better.

[Guest nini]

it very well could be celiac... the testing isn't that reliable in small children, so your best indicator is how does he respond to the diet. I would stick with foods that are naturally gluten free (and free of all his other allergens) Keep a food diary and watch for any reactions.

I know what it's like to just want to see your child get better. I had my daughter tested for celiac (at least I thought that is what the Dr. was doing) until I found out he did not run the celiac panel and just told me the allergy tests he ran on her were negative... He absolutely refused to consider a celiac dx. And just kept saying it was just IBS... come on... IBS doesn't cause the extreme violent mood swings she was having or the horrible bloody rashes on her bottom on and on... I did get her pediatricians support in trying the diet, but I was pretty much on my own. Anyway. The diet worked miracles in my little girl and I hope it works just as well for your son.

Good luck.

[lonewolf]

What is he actually eating now? Are you totally avoiding all those foods that he tested positive for?

[Jnkmnky]

This may not be easy to begin while living in Japan with ingredient labels and all ... But it's critical to begin the diet ASAP. You will probably know rather quickly if the diet is effective in STOPPING those horrible symptoms. Think about yourself having diarhea for a week... I feel really bad for your son being sick that long and you not being able to find a dr who is able to address the problem effectively. The gluten free diet will end the problems he's having if he's Celiac. The key to the diet is 100% gluten free. There is no crumb size that is going to pass through a Celiac unnoticed. It's an auto immune disease and the mark of a great immune system is how well it goes after invaders. It will throw all it's got at a crumb and a slice of pizza equally. What kind of foods do you know you have available to work with while in Japan? Do you have a "health food store" where you can find Gluten free foods? Like a WholeFoods type of store?

If not stick with naturally gluten free foods which would include:

Rice

all veggies

all meats

potatoes

corn

all fruits

make stews, soups.

are you in the military?

avoid all processed foods. No breads unless you find gluten free versions. Rice noodles are good as long as you make sure there's not wheat added.

Avoid soy sauces, anything with rye, barley, malt, wheat, spelt, kamut...

He CAN have buckwheat *yes! that's gluten free! and amaranth.

[shayesmom]

  misgiss said:

Okay, here's the situation. 3 y/o boy (3 ft. & 29 lbs) has had food allergies since 9 mo. Tested positive for wheat, dairy, eggs (whts & yks), almonds, peanuts, pistachios, cashews, blueberries, goat's milk. And I think a few more things I can't remember. He was recently re-tested and still allergic to everything except egg yoks. Oh, he also tested positive to soy but at the time we were dealing with a reaction in his skin and soy didn't make him hive up so we thought he wasn't that allergic. The score for it was really low.

Anyway, he has never had solid poop, ever. But lately it has been worse. It's diareah every single time. With a little bit of blood and some mucus too. We've talked with ped about it MANY times and he just tells me that it sound like it's a dairy allergy...DUH!!! But that's it.

I've never heard of Celiac until today so I'm a rookie. I don't know anything about it. I would love as much info as possible.

Now an even bigger problem: we are living in Japan until Oct. so I'm not sure about seeing a doc here. Plus the language barrier would probably make it pretty hard to communicate clearly all that is going on with him.

We have decided to eliminate soy first to see if that helps. If not we will move on to anything wheat or gluten. Can someone tell me about gluten?

I'm not sure what else to say except that I want to get my little boy all better.

I'm glad that you found this site. From everything you described at the other message board and what you're saying now, Celiac really is a possibility.

The good news is, if this is Celiac, you can manage this completely on your own. For meals and snacks, stick with as many fresh, whole foods as possible. Avoid canned, frozen, boxed and otherwise processed foods. Truly, the gluten-free diet can be very simplistic, very nutritious and relatively easy to follow. It's all about learning where gluten hides and avoiding areas of potential cross-contamination (i.e. washing your hands with a soap that contains wheat germ and then preparing your son's food).

Also, when buying rice, you may want to be sure to buy a gluten-free rice as some of the "enriched" versions are enriched by being sprayed with glutens. Is there anyone who can help you with deciphering some of this in the beginning until you learn what products work for you?

It probably will also be encouraging to know that if gluten is your son's problem, and you maintain a strict gluten-free diet, you will see results almost immediately. My dd was unrecognizable within 24 hours! In 3 days her symptoms were almost completely gone. We also deal with multiple food allergies so I understand how difficult this can get when it comes to preparing meals. Thankfully, you may have found many products already that are wheat-free and so it's not too much more of a stretch to go gluten-free.

Hope that this works out for you....not wishing Celiac upon your son, but rather, hoping that you find this gets him better quickly.