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Just Found Out.

Tadpoles mom

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Tadpoles mom Newbie
Tadpoles mom
Posted

We just found out today my son has a severe case of Celiac and we need to know where to go from here. He is 17 months old and very particular about his food, he's still nursing so he doesn't drink regular milk, almond milk or any of it. His case got so bad that he ended up in the hospital, he broke out in a rash so bad that it looked as if he had been burned. This mommy is very worried I have 3 other kids with special diets so hoping this will be an easy transition. Any advice would be greatly appreciated!!

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frieze Community Regular
frieze
Posted

We just found out today my son has a severe case of Celiac and we need to know where to go from here. He is 17 months old and very particular about his food, he's still nursing so he doesn't drink regular milk, almond milk or any of it. His case got so bad that he ended up in the hospital, he broke out in a rash so bad that it looked as if he had been burned. This mommy is very worried I have 3 other kids with special diets so hoping this will be an easy transition. Any advice would be greatly appreciated!!

celiac is genetic disease, all your childred, plus you and their father need testing.!
rosetapper23 Explorer
rosetapper23
Posted

If your baby is nursing, you should be careful to avoid gluten yourself. Try to eat just natural foods at first (meat, vegetables, fruits, nuts, dairy, rice, eggs., etc.), and over time, you can add gluten-free crackers, bread, and pasta. A gluten-free diet is actually quite easy to follow--it's only when you eat at certain restaurants or at the homes of relatives or friends that it can be challenging.

Tadpoles mom Newbie
Tadpoles mom
Posted
  • Author

I have celiac as well (not a very good patient lol) gluten free food has been good for me I've been eating it for 14 years. What all has gluten and how do I read the labels like what am I looking for, wordwise?

Skysmom03 Newbie
Skysmom03
Posted

This may be a crazy question depending on where you live, but will he eat grits? They are yummy with butter and cheese, and you can even put in small bits of bacon.

Tadpoles mom Newbie
Tadpoles mom
Posted
  • Author

I'm not sure if he will but man ill tear up some grits! My grandma used to make them for me all the time.

shadowicewolf Proficient
shadowicewolf
Posted

gluten is a general term for grain base protien. The ones celiacs react to are from wheat, rye, and barly. in the U.S., because wheat is one of the 8 allergins, it has to be listed. Also, they cannot hide it either. Kraft is a good brand for labeling.

Oats have a high rate of crosscontamination. So unless its labeled gluten free, don't bother with them.

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Skysmom03 Newbie
Skysmom03
Posted

My husband eats the quaker instant grits everyday and has absolutely no problem with them. He became severely sick and was knocking on death's door right before he was diagnosed. He has since gained 70 lbs since. He also eats a lot of eggs as well. Have you ever tried eggs with him? Oh and Betty Crocker's potato buds are also a favorite of my son and husband. My son also loves beanie weenies... Not sure if you let yours eat hot dogs yet. We put BBQ sauce in them before we cook them and that is a new favorite.... I'm surprised to be quite honest.

Tadpoles mom Newbie
Tadpoles mom
Posted
  • Author

Oh yes he loves eggs, and he does like hot dogs! I'm happy some of the things he likes won't have to disappear. How about pasta we've been trying different kinds and they all taste like glue or get very mushy and won't hold up with the sauce.

shadowicewolf Proficient
shadowicewolf
Posted

No playdough playdough though, they make it with wheat flour. There are gluten free varities online that can be substituted.

rosetapper23 Explorer
rosetapper23
Posted

Just eat natural foods--really, natural foods.

Mayasmum Rookie
Mayasmum
Posted

We just looked at what we can eat, and it's very healthy! meats, eggs, fish, veggies, fruits - then I started off with packaged flours, and Udi's bread (so you can make your own chicken nuggets, etc. I found once I changed my mindset about from what we cannot eat to what we can eat, so much changed. Going out is still worrying me, but its great for the finances and health not to eat takeout anyway! Good luck!

mommida Enthusiast
mommida
Posted

Because of the serious onset make sure you get a copy of all the initial tests and reports. Make sure Eosinophilic Esophagitus has been ruled out.

Everyone has given great advice. I just want to add, keep gluten free things on hand with you all the time. Kids are offered treats all the time. The rule of thumb if you are not sure, don't eat it. So you may have to keep a variety of sugar snacks and candy (which is not what I wanted my kids to eat) to trade for. Don't make Celiac feel like a punishment.

Eating out is a risk I don't like to take too often. But when traveling Wendy's, P.F. Chang's, Hamberger in Paradise, Out back Steakhouse, Carrabbarras, and I heard Chick Filla has a gluten-free menu.

mamaofaceliac Newbie
mamaofaceliac
Posted

Great advice mommida, so true... Nothing breaks your heart like a 2 year old crying because it's " not fair" everyone else can have cake, etc. Betty crocker makes great gluten free cake and brownie mixes. I bake one, cut it up and freeze the individual pieces, then whenever there is a party I am set to go with her own piece of cake. Just top with icing and she has no idea hers is different. I always call ahead to ask what is on the menu to do my best to match it. But agreed it is too easy to let the sweet stuff make her feel better.

We are fairly new to the gluten-free diet. We decided as soon as she was diagnosed to upgrade to a smartphone and it has been a lifesaver. Fooducate allergies is an app that you scan the barcode and the product info pops up along with a star color coded to tell us if the product is gluten-free. The find me gluten free is helpful but we always call. Alot of times gluten-free means a steak, seafood, chicken breast- things my toddler won't eat.

Tadpoles mom Newbie
Tadpoles mom
Posted
  • Author

So they have apps for iPhone to help? If y'all know any I'd love to try them!!

tarnalberry Community Regular
tarnalberry
Posted

While my daughter doesn't appear to need to be gluten free, if she's with me, she eats gluten free. She's just always eaten what we eat - early foods were sweet potato fries, roasted carrots, pears, apples, avocado, chicken, yogurt, and eventually rice cakes, steak, cheese, rice, broccoli, bell peppers, etc. She definitely enjoys stir fry with us, and has for a long time. She also really loves Trader Joe's Edamame Rice Crackers when we're out and need an easy snack. (That, and fruit, and homemade muffins I store in the freezer.)

rosetapper23 Explorer
rosetapper23
Posted

Type in the word "gluten," and you'll fine lots of apps to help you.

Tadpoles mom Newbie
Tadpoles mom
Posted
  • Author

Oh I love the fooducate app it's a god send!!

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
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