My 18month Old Daughter Is "pre-celiac"

[crstnol]

I have an 18 month old daughter who has been dealing with multiple food intolerances since birth. Back in Feb. she had a celiac panel done, and while it did not show celiac, it did show a high level of glaiden antibody IgG, borderline anemia (2 months earlier her levels were much higher), an elevated IgE, and an elevated sed rate. Her ped said to go off of wheat immediately, however she had a scope & biopsy scheduled for 3 weeks later, and it was decided to continue on wheat until after that. She had rast testing done for dairy, soy, wheat, oats, oranges, peanuts, eggs, apples, and a couple others...all were completely negative, her scope showed no damage to the villi (?) at all, but they did find "at least a dozen or so" ulcers (wording of the GI) in her stomach. The biopsies all came back normal as well, so they are sending them to another pathologist to try to figure out what's causing the ulcers. Her other symptoms have been weight loss or very little gain (failure to thirve is listed on her charts), blood & mucous in the stools despite eleminating dairy and soy completely for months, night waking, eczema, diaper rashes, hives on occassion. We were told after her rast testing to try introducing some foods, so we tried oats, and her ezcema flared up, we tried oranges and she threw up, rice milk--bad diaper rash. we had been consuming wheat the whole time as all the other things (I breast feed, so I eliminate with her). So, now we have been wheat free for about 2 weeks (and I've been buying glutten free foods for simplisity right now) and switched her rice milk to one without wheat in it and the rashes are all completely gone. She even had started sleeping at night again, but now she has a cold so she's up again most of the night.

My question is, yesterday at her 18 month well child check up, her ped and I discussed her being pre-celiac, and he definately thinks thats what's going on with her. So does that mean that we need to consider her as being a celiac for the rest of her life or can avoiding glutten now mean she may have a chance of not developing celiac and outgrowing the intolerances? We are going tomorrow to have blood drawn on my other 2 kids (6 & 4) to see if they have celiac as they both also get eczema and have bad allergies as well as chronic ear and sinus infections and my son (6) has asthma. The ped also recommended that my husband and I be screened as well for celiac. But, if we are all negative, does that mean that she does not really have celiac?

I'm a bit confused. Also, is there a list of derivatives to watch for in foods? I have a wheat list that shows modified food starch, modified corn starch and many many other things, but I wasn't sure about some of those things. Like Lawory's seasoning, is that off limits? Or Taco seasoning? And what about like rice crispies? I haven't been giving them to her, but my 12 year old niece just tested rast positive to wheat, and her allergist said rice crispies were ok for her.

Any help would be greatly appriciated!

Christy

Lainey 10/5/04--We finally hit 20 pounds!

[Rusla]

Being as young as your daughter is there is a very good chance it wouldn't show damage, yet. You and your husband could come back negative and still have Celiac. The elimination in itself shows that the chances of celiac or gluten intolerance (pretty well same thing without a lot of damage) are very good. There are tons of places wheat, barley, oats, rye, malt hide in, also beware of spelt, kamut as they are wheat too. Anything with HPP or HVp which Hydrolozyed(sp) Vegetable protein, plant protein, modified food starches, or even made in a factory that makes wheat/gluten products is bad. Shampoos, ointments etc.All can have wheat and gluten in them. I suggest you check out the lists on this board and go to the Celiac association nearest you. Also when in doubt leave it out and if at all possible call or email the company to get a gluten-free list or find out if products are gluten-free.

[Jnkmnky]

First of all ... ... Welcome to the world of the Celiac! Your dr and his/her best intentions cannot match the wisdom you will find here! I was doing this diet for my son for 4 years when I came to this site. Within a week, I learned more than I had in four years!

If you child has "pre-celiac"... she will not be eating gluten ever again without becoming ill. You are so lucky to have caught this early. Your doctor must be one of the good ones. From personal experience that is on-going, I suggest that you keep your child away from gluten because it can cause developmental delays that are a bear to overcome.

Young children can test neg for celiac disease even though they are positive. I tested negative, but have a positive dietary response to being gluten free. Gluten doesn't agree with me even if my bloodwork says otherwise. Your other children sound like candidates for celiac disease with those symptoms, so it's great that your having them tested. Even if they come back with neg results, you can still try the dietary challenge to see if they're responsive to a gluten free diet. Testing is not a perfect science yet with celiac disease, they're still working on more reliable testing methods. Do you know about Lyme Disease? My mil comes up negative everytime they test her for Lyme disease, but she had lyme disease so badly that she developed Bell's Palsey and was bedridden for months.

Modified food starch needs to have it's source of starch confirmed. If the ingredient label doesn't have little parenthesis (corn) or (wheat) or something like that after the words, "modified food starch", then you simply don't know the source and must call and confirm the source is a gluten free one.. Anytime you see words that are questionable... call or look on line or email or post a question here. We've all been there done that a thousand times. And folks here are so great. Sometimes in the middle of cooking dinner, I have a question and the 1800 number is not answering due to after hours or there's no info on line,so I post here and within a few minutes, someone here knows for sure the answer.

Barley, malt, rye, oats DO NOT EAT. The rice Krispies your neice was eating probably have malt and that's just Gluten.

Nothing is simple. But it's all pretty easy once you get into the swing of it. You'll be giving advice here to "newbies" in a week! You cannot take a simple statement such as "rice krispies are safe" and apply it to every box or bag of rice krispies you come across.

We use Old El Paso sauces in the Jars. The packets of seasoning tend to have MSG which many react to.

Your daughter may need to be lactose free for awhile while she heals. Many of her allergies/intolerances may lessen or disappear as she remains gluten free. If you're breastfeeding- eat gluten free. And gluten free means 100% gluten free. ANY cheating, is bad. The body is SO against gluten that a single crumb turns on the immune system to attack it. There is no amount of gluten that is acceptable. The body doesn't look at a crumb any differently than a slice of pizza.

[VydorScope]

This list is a big helpe when reading lables :

https://www.celiac.com/st_prod.html?p_prodi...-47106060401.de

[mommida]

Rice crispies that have malt in the ingredients are probably not safe, because malt is mostly derived from barley. There are some specialty cereals and some off/store brand that are safe.

If it is Celiac, the diagnoses is for life. She had elevated blood tests, damage in her "stomach", and positive reaction to the gluten free diet - all reasonable to diagnose Celiac (even more so because of the elimination of casein and soy and testing in children under 24 months is considered not that accurate - more false negatives, I believe) You could genetic test for the Celiac genes, but even that is NOT 100% accurate, or even 98% like the Dr. might say at first.

One of the first things, get a list of companies that are clear about their labels. Kraft and McCormack will not hide gluten on their labels. This site has links and information for you, see celiac3270's post -gluten file, that information compiled there is at least a year's worth of searching on the net, so go slow and don't information overload yourself.

L.

[Guest nini]

um... if her IgG was elevated, she does have Celiac... Dr.s are reluctant to dx Celiac in the early stages especially if they don't find damage in the intestines, however, pre celiac, celiac in early stages or full blown celiac, treatment is all the same. My daughters IgG was negative however she most def. has Celiac. I have Celiac. She had ALL the symptoms I did and improved 100% on a gluten free diet.

Erewhon makes a rice crispy cereal that is gluten free, it is quite good in my opinion. Fruity Pebbles and Cocoa Pebbles are also gluten-free...

[lonewolf]

Another thought - It's a lot easier to put an 18 month old on a gluten-free diet than an older child. Why not just start now, BEFORE she has a lot of health problems. My 11 year old is having troubles with following the gluten-free diet because he knows what he's missing and doesn't want to miss it. He's only been doing it for 3 months and it's a struggle, even though I'm totally gluten-free too.

[TCA]

My son had an elevated IgG, so the bloodwork was considered inconclusive. Dietary response has been phenomenal. 2 negative biopsies, but it's so hard to get accurate tests results for those so young. Our whole family is responding well to the diet. I'm glad you have a good dr.