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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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    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
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