rgeelan

I wrote up a little letter for my son's preschool and explained briefly what celiac disease is, what it can do to him, etc. I put a list of example foods he can have and can't have. Basically I send his lunch every day he goes and if they eat something *mon is movie theater day they have popcorn and soda, wed is ice cream day durring the summer* they always call and ask if it's ok and if I need to swing by and read ingredience I can. They were really understanding and are very good about watching he doesn't get food from the other kids and if they do anything like play with playdough they make sure he has his hands really clean immediatly after so he can't get sick from it. Sending your kid out of the house always carries some risk, but I have found if I explain his situation to people they are generally very understanding and helpful

thanks for the info. william (my oldest) was diagnosed a year ago, so i know how sick it can make a kid but didnt know if it will show in babies also. William had chronic diarhea his whole life than around the time he turned 3 he started vomiting randomly. By the time he was tested in Aug 04 he had been vomiting almost daily for over 3 months. It wasn't untill he lost weight that the doctors took me seriously about something being wrong though.

MSPI is Milk & Soy Protien Intollerance. Emma couldn't handle any dairy or soy at all not even hidden in the smallest quantity or she would get very sick. They said she outgrew it but I sort of think she hasn't or she might be developing signs of celiac disease. She was fine from about 18 to 21 months but for the past 4 months has had chronic diarrhea again. She was breastfed till 13 months then weened to Rice milkbut introduced processed dairy in small quantities, she lost a little weight and had some minor diarrhea but not bad like when she was a baby. At 15 months I introduced regular milk and by 18 months she had gained her weight back and was doing fine. But then she got sick again... I just started a gluten challenge with her today. She's very unhappy that I won't give her 'princess cereal' but I think she'll survive and this will at least let me know if it is the gluten now or if the dairy is bothering her again.

I swear my kids just can't eat at this point! LMAO!

Sarah's doctor has us testing out Nutramagin to see if that helps. We're pretty positive it's allergies but seems to be both Dairy (possibly MSPI again) and Gluten so she is going to Nutramagin for a week to see if it helps then I get to decide what I want to do about breastfeeding... Nutramagin will cut out major dairy and gluten but it still has some very processed dairy in it so she may react to it also and then we will need to go to Neocate. Our other option is to go down to Denver and have her see a GI and have a scope done to rule out defects. We're trying everything else out though first and since she has the mucousy and occasional bloody diarrhea we know there is an allergy going on we just have to pinpoint it. At this point I am not sure I will continue to breastfeed. Removing the gluten from my diet wouldn't be fun but it's easier to do since I do it already for William, but I got very sick and malnurished when I had to do all Dairy and Soy with Emma and can't put my body through that again... I want my child healthy but I can't put my health in geopardy to do that...

Sarah has severe reflux and I am trying to figure out what is causing it. I am pretty positive it is an allergy to something at this point and am thinking either MSPI or Gluten... Can a baby this young have a gluten allergy or Celiac Disease? She hasn't had any gluten outside of breastmilk or formula...

My son was introduced at 3 months and was diagnosed with celiac disease at 3 years. My daughter wasn't introduced till 5 months and hasn't been diagnosed yet (but I may test her again now that she is over 2 years) I plan on waiting till about 5 months to introduce gluten to our youngest just to give her a better chance. My theory is why push my luck. Even if it just decreases her chance a little it's better than nothing!

It sounds to me like you did the right thing. My son is only 3 but we talked with him and I explained what was going on and why he had been so sick and what we needed to do to make him feel better. I couldn't lie to him and I feel better explaining it to him even though he doesn't fully comprehend it yet at least I know I am being truthfull with him and not beating around the bush...

Ok dont mind me but I am going to be blunt here. How old is your son now? And why did you try feeding him cereal at 4 months old... Now this is in a way the pot calling the kettle black, but you should probably wait till 6 months to start solids... A lot of the time it is not so much an allergy as the childs body just is not developed enough to handle solids. We started our son on solids at just over 2 months because he was drinking almost 40oz of breastmilk/formula a day but even then we didn't push solids it was only if he wanted them and he didn't start eating them regularily till 6 months or so... Our daughter started at about 6 months but didn't realy get into eating till about 9 months... She could care less.

I would check for things like a dairy allergy. Because it seems odd that he woudl react to rice and oatmeal both if it was Celiac. Rice can be hard to digest though for really young babies so maybe that isn't an allergy as he's just not ready. There are also problems like piloric stinosis (not sure if that is spelled right) it is an abnormality where they have something wrong with thier intestines and it causes babies to vomit everything, it is more common in boys then it girls. I would check that option also...

I'm no expert but I have been through a lot with both my kids and it has taken a long time to get diagnosis on both of them for being sick, but that has given me a lot fo information. lol

Good luck! Hope you get an easy answer!

I would never let my kid cheat... It's just not worth the price to us... Especially not once a week. Then I spend the next 2 or 3 days (depending on how much gluten he got) dealing with a total grouch and cleaning up vomit...

I have found that food is much more expensive but it's not bad tasting and if you can make some stuff it really is easier... Pizza is still an option we just make his special and we can still go out to eat we just have to be very careful...

it sounds possible that it could be celiac disease or a milk allergy. but at such a young age son't be surprised if nothing comes back positive... Really your best bet would be to put him on a gluten-free diet and see if that cures the problem... Our specialist said that it is rare for a child to show positive for celiac disease under 18 months of age. Possible yes, but very rare. So we are waiting till our daughter is 18 months to test her...

I thought I didn't need new pots and pans? I have the coated kind and they get washed very well in our dishwasher...

And I do have a wisk...

I have gone out and bought a duplicate of all the following items to really try to cut down on cross contamination. My DH is going to think I am insane but I would rather have 2 of things than a sick child...

Collander

Cutting board

Wooden Spoons

Rubber Spatula (because I am nutorious for melting them and food is hard to get out of melted rubber)

Flour Sifter

Rubbermade container for gluten-free Flour

New Toaster

Is there anything that is 100% essential that I am missing???

I poisoned William last night with dinner. It was either the Ragu spagetti sauce or the spices i added... I called Ragu and they said that they would specifiy if it had wheat in it but I explained to the lady how Gluten is more than just wheat... She couldn't help me past wheat though... I am just tossing the leftovers... Taking no chances... And I am not using the other jar of spagetti sauce I have either.

So now I am curious about my spices also... One of my friends told me that a lot of spices have Gluten in them... But I cant tell because my spices dont say that htey have in them...

We got William's 2nd blood tests back today and it was TTG IGA 9.6 which is a strong positive again from a different 'more reliable' lab according to the specialist. He said he is 100% certain that William has Celiac. The biopsy showed damage but they didnt think it was to the point of Celiac yet but his blood tests have come back strongly positive twice and so the specialist is convinced. We are switching pediatritions and the specialist will request that the formal diagnosis is Celiacs.. I am waiting on my blood tests to come back also then we will decide to test Emma...

TTG IGA was 40 (strong positive)

TTG IGG was <20 (negative)

Gliadin IGA was <20 (negative)

Someone help me inturprit these. Still waiting on the 2nd blood tests but just curious other peoples take on the first test.

You know I was so sad this morning when he wanted to go get donuts... That used to be our special treat and I had to tell him we couldn't do that because they would make him sick and he just didn't want to believe it.

We have had William gluten-free for almost a week and the last 2 days he has been AWFUL! So grumpy and talking back. He doesn't like anything. He just threw a fit because we are making him a special pizza all for him... Is this just because his body is going through like a withdrawl or something? He has his moments usually and he used to have a bad bit with screaming and stuff and that stopped for a while and the last 2 days he has been way worse than before!

Rachel, good luck... We are going gluten-free with him for sure because he is responding great to not having any. I just hope it is something he will eventually outgrow...

I just got a call back from the specialist in Denver. Williams biopsy did show damage and inflamation in his small intestine, but at this point the do NOT think he has Celiac Disease!!! It is just being called a severe allergy to Gluten at this point. We are waiting on the 2nd blood tests results because they can't rule out if he is a carrier untill those come back and it could be possible that he is a carrier and just hasn't developed it yet but we are really hoping for the best right now and that it is just a severe allergy because that he has the chance to outgrow and if he should choose to have Gluten in the future it might make him sick but will not cause any permenant damage!!! We will get the final lab results back on next Monday so keep us in your prayers that the first results were just wrong and it's only an allergy!!! I am still asking to have myself tested since I have so many of the common symptoms but we will see how that goes...

Thank you all for your + thoughts and prayers! The power of prayer truly is amazing!!!

HUGS!

Kirsten... Dont be so hard on yourself!!! He is eating just FINE! Hell, remind yourself that he is EATING! Ok! I never worry about if the food my kids eat is bad or good I only worry that they are getting it in them! We have gone through days where my son hasn't eaten more than 2 or 3 bites of food and that is very stressfull, I would rather him eat tons of junk food than nothing...

I am sending you lots of hugs! LMK if you need to talk.

Well I HATE to throw up... With my son I was nausious for most of the pregnancy but only threw up a few times. With my daughter I was very sick throwing up almost daily and that lasted untill I was a good 6 months prego....

I have not been diagnosed with celiac disease yet but will be tested since my son is suspected to have it and I have a lot of the symptoms...

William does that same thing with not wanting to eat. Our doctors just kept telling us it was 3 year old wilpower and that nothing was wrong with him... Of course when they said that they also said to seriously limit what we gave him to drink and force him to eat. Then he got sicker... I now firmly believe that maybe they know what theya re talkng about when they say that eating makes their tummy hurt... And the doctors should have listened sooner while I kept draging him in there.

Good luck!!!

Thanks guys... I laughed when I started reading my book that I bought and the lady who wrote it said how her first trip to the regular grocery store looking for food she left with a bunch of Fritos. LMAO! I did the same thing. I went looking for what I could buy and left with Fritos as the only "non specailty" food. The store I went to had a lot of natural and healt foods so I was able to find things like those Envirokidz bars that William likes...

I keep thinking I am getting ok with the idea of this new diet then it slaps me in the face again and I start freaking out again. William keeps asking for food he can't have and I keep telling him over and over why he can't have it but he laughs and says no, my tummy is fine... LOL! Of course he hasn't had Gluten since Thursday night...

I have to ask though... WHY a new toaster? My husband and I are going around in circles trying to figure this out. After all the crumbs fall down to the bottom and the bread just rests on a little metal wire so how is it getting contaminated?

I will have to buy new kitchen stuff??? If William comes back + for celiac disease I keep hearing that I will have to go get new thigns like a new toaster for his gluten-free bread only and I won't be able to cook his gluten-free food in the same containers that I use for regular food unless I wash them very well first... So I will have to make his food first if I dont want to buy a seperate set of pots and pans for him. And I should buy new seperate condiments for gluten-free food only. All this so that there is no chance of cross contamination by even a few crumbs of gluten getting in his food. Kris and I are 100% convinced that he has this allergy now because he hasn't had any Gluten since Thursday night and he is FINE! Not even a stomach ache!!! But when we tested it and gave him food with Gluten on Thursday night he threw up Friday morning again. I just keep praying that it is just an allergy because then he has hope of growing out of it where as if he has celiac disease he wont ever grow out of it and from what I keep reading even a little Gluten can cause major damage to him. The specialist was 75% positive that he has celiac disease just by the 1 blood test that came back but the base wont take that as a positive diagnosis...

I am beyond stressed at this point. We are so broke it isn't even funny... I splurged and bought Emma her coat.. It's furry like a dalmation print. She loves it... Cost $25 which I guess isn't all that bad for a winter coat but since we're broke it wasn't easy... Of course I also let William pick up a couple of cheep Star Wars toys he wanted. We're spoiling him this past week to make up for all the food we're saying no to and all the doctors he's seen and tests he had done...

I bought 3 books to help with this... 2 are cookbooks Wheat free and Gluten Free, 1 is normal food and 1 is just deserts. I figure if I can learn to make him good things like cookies and cakes then he won't be so upset over the things he can't have. I also got a book called Kids with Celiac Disease. It is good even if he doesn't have full blown celiac disease because the doctor said that if he doesn't have full blown celiac disease with the symptoms he had and how strong his allergy was it is very possible he could be a carrier still and have it show up later and he still has to follow the same diet because of his allergy. This book offers lots of suggestions for gluten-free foods and how to handle different situations which we are going through anyway becuase of his diet...

I just dont know what to do at this point... I keep reading and researching and even if he doesn't have celiac disease yet he at least has to have the same gluten-free diet because he has a strong allergy and all this stuff about needing a new toaster and things like that is just STRESSING ME OUT! We told our parents that from now on if they want to buy the kids something to buy food because we have enough toys and clothes for them but the food is killing us financially...

I would also suggest that the baby might be allergic to Dairy... I had that problem with my daughter and son. Both reacted strongly to any dairy that I ate... Of course they both reacted to soy also and my son was never diagnosed as a baby, but my daughter had problems like bloody diarhea and apnea and they finally pinpointed it to dairywith a mild allergy to soy. Then when we removed it from her diet and my sons (he is 26 months older) both of them got better at first then my son got sick again and now we are finding out for him it is a wheat allergy also. But I would suggest dairy also might be a problem for the baby. My daughter still reacts to dairy and my son still can't have a lot of dairy even after removing the wheat we dont' give him regular milk, he drinks rice milk and stuff like that.

The ONLY formula my daughter could tollerate was Enfamil Nutramagin... They are gluten free and the dairy is so broken down it doesn't cause a reaction. She however would not take formula except in cereal and I am just finally weening her at almost 14 months. lol! I had to take dairy and soy out of my diet for a long time though because she would have rather starved than taken a bottle! LMAO!!!

I will have to look for some of those when we go out again... We got the Envirokids rice bars and William likes those, but can' live off them. LOL!