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Celiac - new possible diag for my 2 yo dd: What to avoid? page 1
Celiac - new possible diag for my 2 yo dd
[ Guest ]mom2twoangels
Posted: Oct 7th, 2008 at 12:49 pm

Hi,

My ped just referred us to a GI doc for my daughter she has been having pretty severe tummy troubles for about a month and after some blood work came back the Ped thinks she may have Celiac.

I have been trying to do some research and noticed that some things are gluten free but not wheat free? Is this right? for Celiac do you have to avoid both? anything else I should watch out for.

I also have to avoid all nuts and rice so finding alternatives is challengeing - I would love any suggestions.

thanks,

YouKnowWho
Member


Posted: Oct 7th, 2008 at 07:37 pm

With celiac you have to be gluten free - wheat, barley and rye being the biggies. Some people continue to use gluten-free oats but that is still debatable in the gluten free community (oats are almost always shipped with wheat or flour so cross-contamination is an issue).

Products do not have to be labeled as gluten free - this is voluntary at this time. It's really easy to find juices that are "gluten-free", or rather labeled as such but when it comes to the basics like cereal, it's harder.


I had more to post, when I read you are avoiding rice as well...

Okay - we use amaranth as breakfast cereal. If you like to add honey, cool significantly after cooking or it will turn liquid. In a hurry - brown sugar works well.

I use quinoa flakes in place of bread crumbs in meatballs and meatloaf.

Quinoa itself is ummm, interesting. My best results have been cooked with broth and really, really salted (and this is coming from someone who does not like salt).

There are several bean flours out there - Bob's Red Mill has a GF mix that is not rice dependent that uses a mix of these flours. Having said that, Bob's is not exactly safe for tree nut allergies - but might be worth investigating to see which bean flours they use...

Grits, polenta, corn - we are so glad to be able to use them again and don't know what we did with out them.

When we did rice avoidance (along with gluten free), DS's favorite treat was a sweet potato with sunbutter and jelly (gross, I know).



USA

DS1 (age 6) - wheat, rye, barley and eggs
DS2 (age 5) - soy,legumes, mushrooms, peanuts and tree nuts
DD1 - (age 1) - NKA/Beef Jerky Junkie

DH - many food intolerances
Me - eggplant, banana, drug allergies

April in the US
Member


Posted: Oct 8th, 2008 at 01:03 pm

Beware of foods that say "wheat free" on the label. Often that means wheat free, but not gluten free. Those foods might contain oats (the non-pure kind), or malt (from barley), etc. Look for things labeled "gluten free"...and carefully read the labels on things labeled wheat free.

As a Celiac, you CANNOT have spelt bread. There are several cousins of wheat that are off limits.

If she can eat corn and quinoa, there is a really good type of corn-quinoa pasta available at many health food stores. It's in a turqoise box.

Rice-free, gluten-free, nut free is going to be difficult for you to adjust to. You will probably want to look at potatoes and root veggies for some of your starches. Quinoa is really tasty (as long as your DD tolerates it). Be sure to get pre-rinsed quinoa...and I suggest cooking it with chicken broth for extra flavor (I use Pacific brand broth in the little foil boxes that are sized like milk cartons or juice boxes).

You might want to subscribe to the KFA website (kids with food allergies...) For a nominal fee, that gets you access to a really good database of parent-contributed recipes for kids with multiple food allergies. There are check boxes you can select when searching for recipes that help you avoid ingredients you're allergic to.

For example, you can use a microwaved sweet potato - mash it and mix with ground turkey, cooked turkey salmon or tuna - form into little patties and pan fry with olive oil and a few spices. Very healthy and tasty - with few ingredients.

Chili is an option...roast beef with root veggies made in a crock pot. Grilled meats and veggies are a good option at restaurants.

For dining out, Outback Steakhouse has a gluten-free menu you can request from your server. It has a LOT of choices. Their cheesy mashed potatoes might be okay for her, in addition to other things.

Red Robin also has a lettuce-wrapped protein burger for the Atkins crowd. They will also just bring you a plain burger on a plate if that's what she wants. Be sure to tell them she has food allergies. Their fries might also work for her...most RRs fries are made in a dedicated fryer that DOES NOT cook the breaded chicken, nuggets, tortilla strips, taco salad shells, etc. (You do want to avoid the fries at most restaurants for this reason...cross contamination is real and does affect most Celiacs.)

When dining out, sometimes I say "wheat allergy" rather than Celiac, because many servers do not understand Celiac. Most upscale restaurants will have a chef who understands how to prepare meals that are gluten free.

If she is Celiac, her first degree relatives should be tested, even if they do not have typical symptoms.

This is a great site, and i hope you stick around...but you might want to check out glutenfreeforum message board for quick queries about what is gluten free and what isn't.

Good luck!

April

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
[ Guest ]mom2twoangels
Posted: Oct 8th, 2008 at 03:46 pm

Thanks so much for the great replies! If we do get a diagnosis I am going to print this out and take it to the store with me.

Since my older sone is Ige to nuts I am used to reading labels but this is going to be a big learning curve - again.

Her intolerance to Rice, was something I have been hoping she would out grow. I think since so many of the gluten free things I saw at the store today contain Rice that I will push up the schedule to get her patch tested and if that goes well up the time we will food challenge her on it. She didn't test Ige positive to rice.

Oh and you say 1st level relatives - would that just be my husband myself and my son or would that include cousins etc?

Thanks again!!

YouKnowWho
Member


Posted: Oct 8th, 2008 at 07:16 pm

I would definitely recommend testing your husband and son - I would give the information out to others within the family, explain the risks (it is often a hereditary disease) and the risks of not being tested (even if not showing outward signs).

And don't let it get to you when/if they don't want to be tested. You gave them the info, it is for them to do without what they please and you have enough on your plate, kwim?

Playdough is a no-no. There is a playdough recipe on the big can of corn starch (and can be found online).

Crayola lists their gluten free items - regarding clays and play-dough knock off on their site.

Kix - corn based gluten free cereal (and makes awesome snack mix with raisins).

Beware of projects at school involving playdough, pasta necklaces, etc - keep contact at a minimum.

Be preprared for a much hungrier child when she is feeling better. Or at least that has been our experience Smiley

USA

DS1 (age 6) - wheat, rye, barley and eggs
DS2 (age 5) - soy,legumes, mushrooms, peanuts and tree nuts
DD1 - (age 1) - NKA/Beef Jerky Junkie

DH - many food intolerances
Me - eggplant, banana, drug allergies

YouKnowWho
Member


Posted: Oct 8th, 2008 at 07:31 pm

We dabbled with rice positives with older DS. He tested positive via blood and spt. We pulled it all out and thought the poor kid was going to starve to death (hence the sweet potato with sunbutter and jelly). Allergist wanted us to keep it out of his diet after the blood test came back positive. I took things in my own hands (our allergist and I don't see eye to eye on all things) and after a two week rice free diet, reintroduced it. WOW!

I had a child who had normal BM's (something he had never had) and that was hungry (which meant his tummy was feeling good, allergen ingestion = appetite suppression for us).

Having rice really would open up your options. But be careful because many "GF" items have nuts in them or on shared lines. It makes sense to me now, rice doesn't exactly have the staying power that wheat and other grains have.

USA

DS1 (age 6) - wheat, rye, barley and eggs
DS2 (age 5) - soy,legumes, mushrooms, peanuts and tree nuts
DD1 - (age 1) - NKA/Beef Jerky Junkie

DH - many food intolerances
Me - eggplant, banana, drug allergies

April in the US
Member


Posted: Oct 8th, 2008 at 10:09 pm

They recommend first-degree relatives (parents, sibs, children), but it seems natural to me that if you can figure out which side of the family it comes from, then you'd want to alert those relatives as well. Say your husband tests positive...then he would want to alert his first degree relatives...and so on.

If you want, you guys can get a genetic test that will tell you with a great deal of probability which side of the family it comes from. It runs about $100 per person. I can explain more if you'd like.

People with the Celiac genes also share a genetic predisposition to some other conditons. My dad has psoriasis...about 17% of cases of psoriasis will clear up on a gluten-free diet. Rheumatoid arthritis, thyroid problems, and lupus are also conditions you *might* find in the family of someone with Celiac. But there's a long list of loosely related conditions. Type 1 diabetes is another. You can find a complete list on celiac.com, probably.

My brother tested himself and was negative, but he hasn't tested any of his kids. He has indicated that he would test them if they show any signs of it, though.

I think the stats indicate that if one person has it, then about 10% of other family members will have it. But if two siblings have it, then the percentage jumps to 20%.

My family situation is a little bizarre because both my husband and I both have it...I have DH (the skin rash variant which tends to have milder GI symptoms), and he has more classic Celiac. It explains why we have three gluten-intolerant boys.

He and I can spot a few of our family members who do, also. Some of them have tested, and some (especially older) don't want to consider the possibility. It's understandable, but it's worrisome that their risk of lymphoma increases if they have it and don't ever go on the diet.

I had some health challenges growing up and in my adult years. I wasn't diagnosed until I was in my mid 30s, mostly because my GI symptoms were mild until then. But I had mouth sores, headaches, rashes, weakness, fatigue, menstrual problems, miscarriages, etc. - all symptoms of Celiac. I'm so glad to think that your daughter might be spared some of that.

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
April in the US
Member


Posted: Oct 8th, 2008 at 10:13 pm

Oct 8th, 2008 at 07:31 pm, YouKnowWho wrote:

I had a child who had normal BM's (something he had never had) and that was hungry (which meant his tummy was feeling good, allergen ingestion = appetite suppression for us).


Thanks for saying this. This is soooo true for us, but I needed a reminder. One of my sons has had a poor appetite lately...time to retest.

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
[ Guest ]mom2twoangels
Posted: Oct 9th, 2008 at 05:50 pm

Thanks all again, I really appreciate it! Her scope is tomorrow so I won't have to wait long although after the GI looked at her blood work he seemed pretty sure she will end up with a diag of Celiac. I am hoping this testing and being able to start the diet early will help her avoid any bigger issues in the future!

I have a few questions after going gluten free how long before you or or your kiddos felt better?

Also what level of cross contamination is ok? I hear it varies? I am only used to Ige allergies and we don't even keep his allergens in the house.

Oh and I hear that some people newly diagnosed with celiac are lactose intolerant either for a short or long period of time. she is only 2 so she can't really tell me what is going on - do you think I should use lactose free milk for a time? If so how long.

Again I really appreciate it!!
Nichele

YouKnowWho
Member


Posted: Oct 9th, 2008 at 08:32 pm

DS has never had a formal Celiac diagnosis - he has allergies to wheat, rye, barley and oats. We were told by current allergist (and I really need to look into this) that as long as he had a gluten free lifestyle (and we do) that testing would be inaccurate.

She said in her experience that gluten intolerances went hand in hand with milk intolerances. DS has a milk allergy, so I'm really no hope here.

As far as how far to go regarding cross contamination, I know many Celiac adults can tell you if their food has been cross contaminated (even if the label isn't forthcoming). DS is in tune to a point with his body (he'll be four in January) but I don't think he could define finite pain, if that makes sense? We still cross lines that some might find grey - like he has Amy's gluten free soy cheese pizza - it makes him happy (no help for you because it is rice based) but others that are GF have had bad reactions. But then we avoid fries at McDonald's (gluten and milk proteins) and Burger King (how many times have you gotten onion rings in your fries?).

Sometimes our gray area is more because we are dealing with so many other food allergies and sadly, I do have to make choices that some may not because he would attempt to survive on fruits and veggies (and he is very underweight).

For us, when we cut out the main offenders, we noticed a difference within a few weeks. I had no thoughts of potty training back in January/February because he had no bowel control. Now, I am going broke in buying rewards because he is almost potty trained (DH just doesn't listen). LOL in our house poopy diapers and trips to the potty are examined carefully and have even heard DS say - "it was a pretty one, wasn't it?" when it's formed and controlled.
Our house is not for the weak stomached!

Good luck tomorrow and hope you get some answers!

USA

DS1 (age 6) - wheat, rye, barley and eggs
DS2 (age 5) - soy,legumes, mushrooms, peanuts and tree nuts
DD1 - (age 1) - NKA/Beef Jerky Junkie

DH - many food intolerances
Me - eggplant, banana, drug allergies

April in the US
Member


Posted: Oct 10th, 2008 at 10:57 am

Nichelle,

It's a big adjustment, but it will feel natural in less than a year.

She definitely needs her own toaster, her own colander, her own condiments, her own cookie sheet. These are notorious for making Celiacs sick. Having a kiddo with both Celiac and peanut allergy, I can tell you that he gets glutened a LOT more often than he gets peanut exposure. And we have a gluten-free household. The sensitivity is pretty high.

Try not to bake with flour from scratch around her. I can tell you that this will probably affect her a bit. Celiac used to turn up more frequently among bakers and people who worked around flour. When I was first diagnosed and very sick, if I walked through the bakery aisle at the store, I would have to run to the bathroom. But now that my system has calmed down, it doesn't bother me at all.

If there's no one else in the family who is gluten sensitive, then I suggest relying on a community of other Celiacs (online) to advise you about safe and unsafe foods. It's easy to query a place like http://www.glutenfreeforum.com and get some quick answers about anything from a brand of syrup, to cough drops, to potato chips, fast food, etc. Just plug in the brand name and you'll find lots of comments from people who either trust a brand or get sick from it.

The current labeling is just not sufficient. Many of us get sick from products that are not labeled as containing gluten, because they are made in facilities where flour is flying.

Here is a helpful tip...and this occurs much faster than with IGE allergies: Do the best you can maintaining a strict gluten-free diet, and then ask to have your daughter's Celiac blood antibodies retested every 3-6 months. Once they have gone down to normal levels, you can rest assured that she is getting very little gluten in her system, and her body is not waging war on it. Experts advise that you should retest using the antibody that was "most" positive before, whether that's TTG, AGA-IGA, EMA, etc.

The antibodies take a while to clear, but a successfully gluten-free Celiac should not have positive antibodies after about a year - two years in the most difficult cases. Essentially, once they achieve that status, you can't tell the difference between them and a "normal" person. But if you reintroduce gluten, the antibodies and the sickness will come back.

Let me know if you'd like to talk sometime. I'm happy to discuss things on the phone.

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
April in the US
Member


Posted: Oct 10th, 2008 at 11:08 am

Oh - I think it's interesting that the other poster mentioned having been rice-free at one time. We also were---for a time (about 6 months).

when my youngest son was on gluten, he did not tolerate rice or corn. He even had a positive skin prick test to rice, which his allergist dismissed as "highly improbable." (Allergists don't usually suspect Celiac, or even know much about how it behaves.)

I went completely grain free with him for about 6 months, and then cautiously reintroduced some gluten-free rice products. He did fine with them.

So I'd encourage you to watch the rice allergy/intolerance and perhaps try rice again (doctor supervised) at a later date.

April


Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
[ Guest ]mom2twoangels
Posted: Oct 10th, 2008 at 11:24 pm

I really can't tell you both (you know who & April) how much all the advice has meant to me.

My daughter had her scope today GI said it looked like Celiac but he wont' know for sure until he gets the labs back. He was sure enough to have us start a gluten free diet.

So, Today was also my first trip to a store that specialized in gluten free, considering I am also avoiding all nuts and rice it was a challenge to say the least and I am used to shopping for and cooking for extended family who are egg and dairy as well as nuts and rice and shellfish so it's not like I am a total allergy greenhorn Smiley. My very restrictive comfort zone for new foods for my nut alleric son and some of the choices I had to make for my daughter today (who tests neg but has never had any nuts) was very hard. I bought stuff and will be calling asap to check on cross contam with nuts. One thing I am having a very hard time finding here are Celiac safe flours most I have found so far also run on lines with some kind of nut.

I try to buy mostly squirt condiments except I think I will have to get her her own butter - thanks for pointing that out though I am still forming my confort zone for cross contam etc. The baking is going to be huge. I have to bake for my son's school very often and not only do I not want to have to figure out recipes etc they will like the cost of the specialzed flours is outrageous. So if I do it when she is not home would that help?

I was mad at my self because I forgot to buy a toaster at the store today! But it has been such a long day the scope was at 6 am. I was thinking of using those silicone pan liners for her stuff that should work right assuming I was the cookie sheets as well as use the liners? And I just use a big slotted spoon as a collander so that will be easy to use one for her and one for the rest.

My husband and son are wheat junkies - I really think I would have a huge battle getting them to go wheat free.

I am probably rambling considering I have been up since 4. Thanks again!!

April in the US
Member


Posted: Oct 11th, 2008 at 11:30 pm

I have nothing but good vibes to send you...this is going to be a tough journey - but hopefully well worth it for you.

I don't know if you're in the midwest...if you're around a Hy-Vee supermarket, you might look at them for gluten-free stuff. If they don't have it, they'll typically order it. Most Hy-Vees carry a type of pizza call Van Harden. It's, er, unusual...but it's a cheese crust pizza...that's right...cheese and pizza toppings on top of, um, more cheese. The cheese crust hardens a bit after you remove it from the oven. It's kind of a greasy mess, but it tastes good..like pizza. I e-mailed the guy about peanut allergy concerns...he doesn't use any peanuts in assembling the pizzas, but he's not 100% sure about the supplier of his sauce.

I think there's a tapioca based pizza crust...and a potato one (but it might have rice flour also).

There's a crunchy potato based snack called Cheecha Krackles--they have a website where you can order the gluten-free version of their snack. Seem to remember it having very few ingredients...it was a good snack for my youngest when he was very little.

I bought a coffee grinder to mill my own almond flour...we don't have almond allergy (it's in the peach family, like a peach pit), but we do have peanut allergy. The only almonds I trust are Blue Diamond, since they're peanut free. I just grind them in the coffee mill as needed for almond flour. Almonds may be off limits for you - but if you can do them, you can make great sweet baked goods from almond flour + cocoa.

My PA/Celiac son tried the corn + quinoa pasta today and loved it...ate two bowls. Where possible, the rest of the family should try the GF versions of things to see if they're willing to convert. Sneak the pasta in, maybe 1/2 and 1/2, to see if they notice. ;-) It's always easier to cook one meal vs. two in the long run.

Buckwheat flour is okay, works great for pancakes...mine is blended with rice flour, but you might be able to find it without.

You might check out Living Without magazine. I find it worth the subscription price.

Mom of 3 AWESOME boys

* Me: Celiac
* DS1 (8): IgE allergies Peanut (ana), Soy, & Pork; also Celiac Disease (gluten), Eosinophilic Gastroenteritis & Colitis, on gastrocrom
* DS2 (4): NKA, gluten-free diet, mild Eos., outgrew milk allergy
* DS3 (2): Neocate plus tolerated foods, Celiac, no IgE allergies, lots of intolerances, doing well
YouKnowWho
Member


Posted: Oct 12th, 2008 at 01:58 pm

Went out to eat this weekend as I occassionally like to have foods that I can eat - tomatoes, garlic, cheese, wheat pasta, etc.

And I came to the conclusion after eating wheat pasta and complaing for the third time, I don't like it anymore Smiley I never thought I would say I preferred gluten free pasta.

Now bread, that's another story. But DH who has no other options now, is getting used to it.

Mrs. Leepers has corn spaghetti (April can tell for sure if it's safe, I just know it as being gluten free not if it's not contaminated).

USA

DS1 (age 6) - wheat, rye, barley and eggs
DS2 (age 5) - soy,legumes, mushrooms, peanuts and tree nuts
DD1 - (age 1) - NKA/Beef Jerky Junkie

DH - many food intolerances
Me - eggplant, banana, drug allergies