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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.!
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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.

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Tadpoles mom Newbie
Tadpoles mom
  • Author
Posted

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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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.

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Tadpoles mom Newbie
Tadpoles mom
  • Author
Posted

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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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.

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Tadpoles mom Newbie
Tadpoles mom
  • Author
Posted

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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shadowicewolf Proficient
shadowicewolf
Posted

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

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rosetapper23 Explorer
rosetapper23
Posted

Just eat natural foods--really, natural foods.

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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!

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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.

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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.

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Tadpoles mom Newbie
Tadpoles mom
  • Author
Posted

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

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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.)

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rosetapper23 Explorer
rosetapper23
Posted

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

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Tadpoles mom Newbie
Tadpoles mom
  • Author
Posted

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

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      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

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    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
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