Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My 3 Boys Diagnosed


krisb

Recommended Posts

krisb Contributor

My 8 year old was diagnosed first. So I decided to get the younger boys tested. I found out on my birthday that they all tested positive. I called the GI and told them I don't want to put the younger boys through the scope. She said I can just start the diet since they all have the symptoms, they have the pos. blood test and there brother has it.

My test came back negative but I was told to try the diet since I have many symptoms also plus seizures.

My 5 year old is in denial. he is mad and is yelling at me. He yelled at me at the store because I wouldn't let him get a cookie. He's not taking it well.

My 8 year old is doing so good. he thinks he is already getting stronger. Cute. And he was very moody this morning. I asked him why and he said it was because of the celiac.

My 2 year old has no clue.

So I think I wil be here more often. I need help. I was used to my 8 year olds limited diet because of his food allergies but now I have to eliminate wheat and gluten also. It's hard. He alread can't have peanuts, nuts, seeds, soy, legumes, plums, and apples. It's just a little change adding gluten to that but it's hard.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini

It will probably be easier on you if your whole family is gluten free, that way the boys won't feel left out at home... (just a thought)

also, there are some incredible gluten-free cookies out there. Do you have a Whole Foods near you or any other health food store that carries gluten free goodies?

This site is excellent for finding great products so that the kids can feel like they are eating "normal" foods.

My daughter is five and has been on the diet since she was three. She's adjusted very well and loves to share her gluten free goodies with her friends at school. We are all gluten-free here at home. Hubby doesn't have to be but he decided it was easier on us at home and he's trying to cut gluten out of his diet when he's not at home too.

Carriefaith Enthusiast
I need help. I was used to my 8 year olds limited diet because of his food allergies but now I have to eliminate wheat and gluten also. It's hard. He alread can't have peanuts, nuts, seeds, soy, legumes, plums, and apples. It's just a little change adding gluten to that but it's hard.

The best thing to do is to go out and get a gluten free recipe book and/or a book about celiac. I recommend Wheat Free Worry Free by Danna Corn. Also, a gluten free product list would come in handy. I have one if you want it... my e-mail is carriefj@hotmail.com and I can send it to you. I know the diet is hard and overwhealming at first, but once you get the hang of it and find out what they can/cannot eat than things will get better.

Your sons diet sounds very restrictive... how about making a pile of things that he likes and can eat on your days off and then freezing it. This is very convenientt for those days when you cannot cook and need something fast. Some foods that freeze well are gluten-free pizza, casseroles, muffins, gluten-free bread, smoothies, ect.

skoki-mom Explorer

Kris, it must be so hard to keep track of what everyone is doing! My 2 girls just got negative test results back today and I was sooo happy, I'm sorry things did not work out that way for your boys. While I think there are far worse things to have than celiac disease, it is just such a worry to think about what might be going into them when we aren't there to supervise. I think my kids would have been having tantrums too, especially my 7 year old, so I think that is developmentally appropriate. Your 8 year old is probably already "used" to being aware of what he eats and that's why he may seem to be coping well with it. I agree that just maintaing a gluten-free house will take a lot of headaches out of things for you, I have to be very careful my kids crumbs and stuff don't get into my food, but they are being pretty good and often ask me "can you eat that Mommy??" and then they cheer when I say yes, lol.

Anyhow, sending hugs your way and I really hope that you and your boys start to feel better soon!

KaitiUSA Enthusiast
My 5 year old is in denial. he is mad and is yelling at me. He yelled at me at the store because I wouldn't let him get a cookie. He's not taking it well.

Why not let him pick out a candy he can have then? There is quite a bit we still can have.

Do you have the Delphi list?

Also, do you have the names of the mainstream companies that will not hide anything even under otherwise questionable ingredients? Those are very helpful and save us alot of time.

Do you have the safe and forbidden foods list?

This is a great resource so you definitely came to the right place. Please feel free to contact me if you need any help. :D

Jnkmnky Collaborator

Open Original Shared Link

Very tasty bread, donuts, bagels, pizza crusts. Order tons. Shipping on orders up to $200 is only $10. Store in freezer.

Open Original Shared Link

Here are two good sites for ordering tasty food. Shipping is reasonable at Kinn-

Chebe, not so reasonable. However, Chebe is very versitile, I shudder at the prices but order because it offers such a wide variety to our diet. We particularly like the garlic onion chebe. Adding extra garlic salt/olive oil, to pizza sticks made with the garlic onion chebe is great. You can use rice milk or water instead of milk. You don't have to add cheese if you guys have a dairy issue. We make corn dogs with Chebe and "Hot Pockets", - chebe rolled flat, filled with broccoli, ham, chicken, cheese, spaghetti sauce, pepperoni, mozzerella, pesto (not all at once!) :lol: Great dinners... or buns with butter, or garlic sticks. Definitely a must have. Order tons *shipping sucks* but stores in a pantry in individual dinner sized serving bags. Very convenient.

krisb Contributor

Thanks,

I went out and bought a bunch of ice cream and candy. I bought some chococlate for them to keep in school. I did make them cookies but I didn't read the lable properly and it contained almond meal. i could have killed my son. He did eat them too and thank God he didn't react. I'm just in the proccess of figuring out what is safe.

I also made my first loaf of bread. It was from the gluten free pantry. They do proccess it on the same lines as almonds but they clean in between. Other nut allergic people said they haven't had a problem with it. It came out good and my boys liked it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



redheadheather Explorer

Just a note to let you know that it does get easier. My son took it pretty well initally too (he also has a nut allergy). He's 6. He was (and still is) sad that he can't have certain things (like McDonald's chicken nuggets and pizza from the pizza place). But, we've also figured out "replacements" that he's been happy with. I found a recipe for "McDonald's nuggets" and while they aren't exactly the same... he likes them. And pizza has been a success as well. The more we learn about where to find foods and recreating his favorites and the more "normal" we've made eating this way - makes DS not think twice about it. He likes that he has his own treat drawer (thanks to whoever on this board suggested it - it's working out great) with gluten-free varieties of cereal bars, pretzels, etc.

Kingschild Newbie

(((Hugs)))

I'll be thinking about you and your boys today. Especially your little 5 year old. I have a 5 year old son and he's getting tested soon.

Mysti

Jnkmnky Collaborator

Open Original Shared Link

I posted some "normal" food ideas here. I have three kids too. We eat food that looks like what everybody else is eating.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.