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

I Hate Celiac Disease!

concernedmamma

Recommended Posts

concernedmamma Explorer
concernedmamma
Posted

One of my boys(Jacob) was diagnosed with Celiac in March of 2010....... positive bloodwork and biopsy. It has been a challenging year. He is EXTREMELY sensitive! School (kindergarten) resulted in many episodes of cross contamination, and many tummy aches, diarrhea and headaches for my boy.

Today we found out his twin brother (Gabe) also has Celiac. This sucks!!!!! We had a mixed house before, but will be going 100% gluten-free now. To make matters even more challenging, Gabe has Down Syndrome. At this point, he won't understand why all his favourite foods are now off limits. He is a skinny little guy, a very picky eater. What has put my mind at ease is that he will eat peanut butter toast in the morning- or all day if I would let him. He LOVES bread, toast, buns, etc. We tried giving him gluten-free bread/toast before and he did not like it at all! He is a large part of the reason that we maintained a mixed household.

I am not a happy momma. I just feel sad for all of the food challenges and choices that they will have to make in the future. I know there is way more available to them now than ever before, but this still bites the big one.

Thanks for letting me vent.

Kim. Mommy to 4 wonderful children- 2 girls age 7 and 2 and twin boys aged 6.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

There are gluten free breads & peanut butter (skippy for example is gluten free).

Well, think of it this way... it could be worse :)

kareng Grand Master
kareng
Posted

THought I posted.....wonder where it went.

Sometimes, waiting a couple of weeks helps when switching to gluten-free versions of gluten food. Makes your mouth forget the original stuff.

My 18 year old still likes to put colored sugar sprinkles on his PB toast. Maybe that would make it better?

suziq0805 Enthusiast
suziq0805
Posted

Does Gabe like to be able to choose things he eats? Maybe you could get a couple different types of breads and let him pick which he likes better. I teach and sometimes if I let the kids choose (between 2 options that are ok with me) then I have better luck in getting them to do what I need them to do. Maybe he could help prepare parts of his meal too...maybe if he does it he'll feel some ownership and be more motivated to try it.

catsmeow Contributor
catsmeow
Posted

(((((hugs))))) I am so sorry. You have some tough years ahead of you, no doubt about it. I'm on one year and still struggle, and I am an adult. I cannot imagine how challenging it would be for kids, and their Mommy. I've read a lot of posts concerning kids and birthday parties, teachers, school lunches etc. It sure looks tough. I can tell you really love your children and will be their best advocate for good health and fair treatment!! Stay tough Mama!

Women are like teabags. We don't know our true strength until we are in hot water! ~ Eleanor Roosevelt

sreese68 Enthusiast
sreese68
Posted

It's tough when you have a picky eating child! I have two of them! (My other two are more open minded.) I've found that my kids do not like any store-bought bread. The only bread I've found that they all eat is King Arthur's gluten-free bread mix. It's easy to make. So maybe a try some bread mixes?

Good luck!

Leah's Mom Rookie
Leah's Mom
Posted

I totally feel your pain. Have him try Udi's bread . . . it's the closest gluten-free bread we've found to regular (soft and not grainy like other rice breads). On the bright side, I think it's been easier since we went 100% gluten free in our home. No chance of cross contamination (double dipping the butter knife, etc.)and our daughter feels "normal" when at home since we all eat the same thing now. I have been packing school lunches for the last 4 years now (since I can't possibly trust the school cafeteria with gluten-free foods). I hate that there's not much variety in their lunches throughout the week, but I think both my kids have been incredibly healthy since I started doing it . . . no long lasting colds or flus anymore. . . All the kids who eat school lunches are constantly getting sick, but ours don't. It makes me shudder to think what goes on in the school kitchens.

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

Celiac.com Sponsor (A8-M):


Laura HaHe Newbie
Laura HaHe
Posted

I feel for you, I am having a hard enough time with one gluten/dairy/soy intolerant child! Are their other foods he likes? My daughter will not eat the gluten free bread (which I understand because it is gross) but loves loves loves gluten free oatmeal with some berries in it, rice noodles, and rice.

shadowicewolf Proficient
shadowicewolf
Posted

I feel for you, I am having a hard enough time with one gluten/dairy/soy intolerant child! Are their other foods he likes? My daughter will not eat the gluten free bread (which I understand because it is gross) but loves loves loves gluten free oatmeal with some berries in it, rice noodles, and rice.

Gross? Blasphamy :P the one by pelamas (sp fail?) is very very good. When you can't have it, you learn to like new things.

j/k

organicmama Contributor
organicmama
Posted

Are you willing to make your own bread? I found a recipe online that I would never be able to distinguish from regular bread that I can post. I'm a few weeks gluten-free, so I haven't lost my taste for regular baked goods. The recipe is CF, SF, and EF too.

alex11602 Collaborator
alex11602
Posted

Are you willing to make your own bread? I found a recipe online that I would never be able to distinguish from regular bread that I can post. I'm a few weeks gluten-free, so I haven't lost my taste for regular baked goods. The recipe is CF, SF, and EF too.

Would you please post it? My oldest misses having bread for sandwiches and I haven't been able to find one that was gluten-free/DF/SF/EF, I would really appreciate it.

organicmama Contributor
organicmama
Posted

Here you go. Hardest part was grabbing all the ingredients. If you like the recipe, I know of a place where you can order teff at a reasonable cost for future use. It's normally pricey in stores.

aprovechar.danandsally.com/?p=228

ChristyL Rookie
ChristyL
Posted

I'm sorry:( I know it's incredibly hard. My daughter was 18 months when she was diagnosed. I have never seen a pickier eater and she was skin and bones when she finally got diagnosed. She was also afraid to eat. My mission was to get her to eat something with a lot of gluten-free calories. I was able to do this with King Arthur gluten-free muffin mix. They are more like little cakes and for awhile it was the only thing she would eat. But it did the trick. You can add all kinds of puree's to them to make yourself feel better:) Once she realized food didn't always hurt, I was able to make her mac-n-cheese (rice noodles, shredded cheeses, butter, milk) and I add peas (and sometimes a cauliflower puree). That's how we got started. She's better now but still very picky. My saving grace is a cookbook called 'Incredible Edible Gluten-Free Food for kids' by Sheri L. Sanderson. I know it's hard. There were days when I thought I was loosing my mind. But it will never be as hard as it is now. You'll figure it out because you have to. That's what moms do:) Good luck to you!

melikamaui Explorer
melikamaui
Posted

I totally understand. My youngest son was diagnosed a year ago, and my oldest just last week. On top of that, I have it too. I went from worrying about one kid, to worrying about both kids and myself! Thankfully we were already 100% gluten-free in the house so very little changes there. I find now that I have to grieve all over again for the loss of a "normal" life for my children. :(

mom2m2j Newbie
mom2m2j
Posted

concernedmamma, I so feel your pain. We received the call from our Pediatrician 2 weeks ago that our 7 year old DD with Downs has Celiac disease. We have been in shock. She is asymptomatic and doesn't really understand why she can't eat her Gold Fish, Cheezit's, Totinos Cheese Pizza, and Chicken Nuggets. We recently moved and were doing the routine blood work, (CBC and Thyroid funtion), the new doc asked if she had ever been tested for Celiac and recommended it since she had not and explained the increased incidence in children with Downs. She has had the occasional "tummy hurts", but what child doesn't. Yes,it could be worse and I know that we have been blessed that she has been so healthy (no heart or other digestive problems), just the typical sinus, ear infections, and occasional strep. This is really rocking our world. She will not touch a slice of bread, roll, cupcake, muffin, or cookie (except for mom's gooey chocolate chip ones).

I was in total denial the 1st week, but after reading info about others being asympotomatic, and that you don't get false positive tests have come around. It is heart breaking to be called "mean mommy" when I have to say no to requests for all the favs. mentioned above, and have cryed myself to sleep several nights the past week. So happy to find this forum! At least I know I'm not alone and can find some suggestions and support. We do not have a local DS support group (closest is an hour away), and I have not been able to find any local celiac disease support groups.

Crossing my fingers that my 1st gluten-free food order arrives today and I can make her a gluten-free pizza that she will actually eat. We tried Red Brick Pizza's version, she ate the cheese & sauce left the crust.

I keep telling myself it has to get better!

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.