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

Am I Alone In Feeling This Way?


Guest taweavmo3

Recommended Posts

fatherof4yearold Rookie

I have a 4 year old who was diagnosised with celiac in October 2004, my wife cried as she threw everything thing he ate out!! He was a picky eater to being with and we ripped his world and ours apart.

His diet was mac and cheese, waffles, pizza, chicken fingers, fish sticks and peanut butter sandwiches. Over the last several months we have figured out ways to replace them all with things he now likes.

for pasta stick to the stuff that has multiple flours, the corn pasta get like a lump of starch if over cooked slightly and the rice pasta has a distinctive taste to it. We found the Kraft cheese powder in containers at Walmart same cheese stuff they put in the boxes which he used to love.

You can get gluten free waffles at tons of places most grocery stores carry Vans waffles and they are not much more.

We make pizza on corn tortillas which are cheap and it is easy to make, also we found frozen taquitos made with chicken and corn tortillas.

We found gluten free chicken fingers made by Wellshire farms, we ordered a box of 20 for i think $70, came to like $3.70 a piece which was not that bad and he loves them, IANs makes fish sticks they are a little pricey and we bake his own bread by buying the mixes.

We do the pancakes mixes, I mix in apple sauce or honey to give them a good flavor.

He eats pop corn, rice cakes, chips and corn chips for snacks if we could ever get him to eat veggies or fruit it would be a happy day, also you got to love the low carb bars, most use soy. We just took him to Disney World and he did not starve it is the easys foods that are the hardest.

Hope this helps you!


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



Celiac.com Sponsor (A8-M):



tpineo Rookie

If you don't have it yet Kids with Celiac Disease by Danna Korn is a great resource book. I definitely felt like you do when my daughter was first diagnosed but it really does get easier and become second nature. (I stockpile her favorite items and have a second freezer for frozen items.) The expense gets a little better as you weed out certain items and figure out what she likes and where to purchase things (prices vary greatly on so many products...) but I am nowhere close to pre-diagnosis spending on groceries. If you have a local support group they can be a great a resource for information, too. Good luck,

Tania

Greenville, PA

connole1056 Rookie

I seem to have had a very different experience than the other posters. For me, it is much easier to spend the extra money on the prepared foods, rather than make everything myself. In some cases it is actually cheaper to buy prepared. I found that the foods I made were just getting stale too fast. I know that freezing can be a good option, but I found it was taking up the entire freezer. I did get another refrigerator for the gluten-free food, but that is a huge expense right there. So, I think it is all a matter of what works for each person. I found I can offer my daughter more of a variety by buying a bunch of the prepared foods.This is important because my daughter tends to get sick of foods she has often.

As for the movie, Supersize Me,it was completely unrealistic. He certainly did not represent the average person. I do not have a problem with giving my daughter fast food, or anything with preservatives. I think anything is fine IN MODERATION, unless there is an intolerance or allergy!

What gets me the most is buying gluten-free food, which is expensive, and then throwing it away because my daughter hates it. I do make her try things a few times before tossing it because I do think there is a thin line between not being used to a food and not liking a food, but sometimes she just cannot get used to something & it gets tossed. My daughter LOVES Wellshire Farms chicken nuggets, but hates Ian's. So I ended up tossing a few boxes of Ian's because they were not going to get eaten.This happened with other gluten-free foods I'd gotten her as well. Now, in order to save money I do not stock up on "new" foods. I wait until I know she likes them. This has actually saved me a lot of money. It seems very basic, but it certainly helped me. When my daughter was first diagnosed I stocked up because I wanted her to have plenty to eat. And I did throw out alot of what I had stocked up on. Just a little advice I hope helps someone.

debbie-doodles Contributor

connole1056, I bought the IANs chicken nuggets for my daughter and she hates them too. Where did you get the Wellshire Farms ones?

VydorScope Proficient
connole1056, I bought the IANs chicken nuggets for my daughter and she hates them too. Where did you get the Wellshire Farms ones?

I just bought some to try about 2 hours ago from a chain store called "Wild Oats" Open Original Shared Link , the had more gluten-free food then Krogers does, and what they do have is cheaper then Kroger.

Guest nini

my daughter really likes the Ian's chicken nuggets, but I think they are nasty. we both like the fish sticks though. I prefer to make my own chicken nuggets with my handy dandy fry daddy! I e-mailed a link about the Wellshire farms nuggets to the grocery manager at my local co op, she's going to see if she can get them in.

connole1056 Rookie

I have gotten the Wellshire Farms chicken nuggets in a few stores. If anyone does not know they were out of production for a while. They are now available. Anyway, I have gotten them at Whole Foods. The other stores are local and I live in Rhode Island. I do seem to find them in most health food stores though. Most stores will look in their books (order books) and order a product if I ask. Another thing, when the nuggets were unavailable I made them myself by dipping chicken breast pieces in some flour and seasoning and then cooking them. They can be baked or fried. This is one dish that does not take longer because it is gluten-free.


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



Celiac.com Sponsor (A8-M):



VydorScope Proficient
I have gotten the Wellshire Farms chicken nuggets in a few stores. If anyone does not know they were out of production for a while. They are now available. Anyway, I have gotten them at Whole Foods. The other stores are local and I live in Rhode Island. I do seem to find them in most health food stores though. Most stores will look in their books (order books) and order a product if I ask. Another thing, when the nuggets were unavailable I made them myself by dipping chicken breast pieces in some flour and seasoning and then cooking them. They can be baked or fried. This is one dish that does not take longer because it is gluten-free.

Which flour do you use? Rice?

christle Rookie

I hope someone can help me. My daughter has always been thin. She was diagnosed with ADD in 3rd grade. I pulled her from 7th grade and began homeschooling her because her grades were so poor. I have definitely noticed a huge difference in her ability to comprehend. She is doing wonderfully now at age 17. She had been complaining about severe stomach pain for about a year and after blood work, upper endscopies and poking and prodding, we were told she had IBS. Well, the medication they gave her had no effect. I found out about Celiac in February and had her tested. She came back negative. I started her on a gluten free diet anyway and she changed dramatically. She has been gluten-free since March of 05. She was 92 lbs and 5'5. Needless to say, she hated the way she looked. She doesn't enjoy outings, she doesn't like anyone to look at her, and she is very self concious. 3 weeks ago she was weighed and was at 99.5 lbs. Wonderful! She was elated. 1 week ago she had the stomach flu and could not eat anything solid for 5 days. The weight she had gained was lost and now we are back at 94 lbs. She is so disgusted with herself and I don't know what to say to encourage her anymore. I find myself trying to be strong for her, but I feel like I am breaking apart. I want my daughter to look and feel like other healthy 17 year olds. I don't want people looking at her as if she is anorexic or something. We tried Ensure with ice cream shakes and she loved them. About 500 calories. She drank 1 per day with a meal. Now she says the ensure or ice cream makes her stomach hurt. I wonder if she is lactose intolerant. Would a lactose pill work before eating dairy? I know this is long, but could someone please reply.

KaitiUSA Enthusiast

I am also 17 and had the same problem with weight before I went gluten free. If she is on a gluten free diet have you made sure she is not getting anything containing gluten into her diet. This includes products like lipsticks which often contain wheat starch and other products that you put on your hands, face, and head which can easily get into the mouth.

Plus, it can take more time then that to see improvements. It took me a good 3 months to notice differences and then 6 months to get back to normal. Since she is fairly new to the diet tell her to give it time..with feeling better and eating more the weight will come back on.

Celiac is often misdiagnosed for things like IBS.

If she has been doing better on the diet I would keep her on it.

If she wants she can contact me ...I know I can relate to her because I was there at one point. I had alot of trouble gaining my weight back..it took time and I didn't like that.

I can also help with makeup brands and product brands which we can have if you would like. There are also sections throughout the board about products that we can have.

About the lactose....many celiacs have a problem at first with this because of the damage to the villi(which helps digest lactose) I was lactose intolerant on and off my whole life then after my intestines healed after a few months I was able to have it with no problem. So she may be able to have it in the future.

Try things like Baked potatoes and try to put high calorie toppings on top. Baked potatoes are good for the stomach.

Also try frying your own rice and fry it in something like olive oil to get some fat in it.

There are alot of good things you can do to get calories in her. Make sure she is getting enough calories. A food journal may help out. That way you will know what she is eating and if she is getting enough...thats what I did for a while.

Also if she feels bad after eating something mark it down so you can see if there is a correlation with anything.

Good luck :D

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
      133,328
    • Most Online (within 30 mins)
      7,748

    AndiSchweb
    Newest Member
    AndiSchweb
    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.