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Just Found Out.
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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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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.!
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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.

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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?

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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.

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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.

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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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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.

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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.

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

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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!

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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.

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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.

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

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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.)

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

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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