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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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  • Recent Activity

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      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Seeking advice on potential gluten challenge

      Thanks so much!
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      Seeking advice on potential gluten challenge

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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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