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

Need A Pep Talk

SuperMolly

Recommended Posts

SuperMolly Apprentice
SuperMolly
Posted

Hey Everyone...

I am feeling very frustrated with Celiac Disease and cross contamination these days. My husband is encouraging me to make the house gluten free so we don't always have to be so careful and so I can better avoid cross contamination. I have no desire to eat gluten. What is hard for me is with 6 kids and a husband that can have gluten, why would I force them to be gluten free? There is so much "good" food out there. I know we would all be eating healthier if we were gluten-free, but I don't feel like having food battles with them. I feel like I am consumed by thinking about gluten all day. I wish I had other people around me who had to live perfectly gluten free. My friends and family support me, but nobody truly knows what it is like to live with celiac disease unless they have it too.

I feel selfish to make my family sacrifice their diets because of me. This is stupid because I know if my hubby or one of my kids was diagnosed with celiac disease I would do everything I could to make the house gluten free. I guess the fact that I can still function when I've been glutened makes me a bit lazy. I don't feel like I'm dying anymore. I feel better most of the time, but boy do I get crabby and have quite the stomach aches when I have a speck of gluten! I'm starting to wonder how important it really is to avoid all cross contamination.

I have a poor me attitude lately and that is not healthy either. How do you all handle living with celiac disease without getting discouraged?

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

Hi Molly,

It just takes time to learn how to deal. If you would absolutely go gluten free for your family if the roles were reversed, why not "let" them do the same for you?

Isn't it better for your kids to have a healthy, happy Mom? Your husband is supportive, and I would bet your kids will be, too.

My younger son and I are diagnosed celiac (he's 10). We made the whole house gluten free, so my 13 year old just had to live with it. He was 100% gluten free for about 6 months, then when he actually had gluten, he got sick. Turns out he is at the very least gluten intolerant. The deal I made with him before we knew he had issues is that at home, there will be no gluten. If he wanted to go out with friends or whatever and eat gluten, he was free to, just not in the house. It worked out well.

It really is better for your whole family is you are well to take care of them (and not so crabby). Just my two cents, for what it's worth. It sure does make coping easier when you're not constantly worried about getting glutened in your own home.

Janie

Skylark Collaborator
Skylark
Posted

I handle living gluten-free by hanging out here! I got really sensitive like you are and started to think I was losing my mind. I have a couple friends who are gluten sensitive, but they don't have to worry about crumbs the way I do.

Your family can't be enjoying a crabby, stomach-achey mom and you have your husband's support which is wonderful. I'd say go for it and take the house gluten-free. Remember that your kids and husband can eat as they like when they're away from home. Besides, with a celiac mom gluten is not necessarily good for your kids. Limiting their exposure to it is not a bad thing health-wise. Remember they are all at risk for celiac because you have it.

ravenwoodglass Mentor
ravenwoodglass
Posted

You have gotten a couple great answers already and I agree with them fully. It is not selfish to need to be healthy and if getting glutened makes you crabby that is going to affect your family. Having a healthy and happy Mom is very important and you want to be around for them as long as you can. Since your DH is willing to do the whole house gluten free that is a hint that your glutening may be affecting the household more than you realize. Take him up on it.

cassP Contributor
cassP
Posted

i understand the "poor me" thing totally. ive been craving gluten A LOT lately... yesterday at work, all i could think about was those "crispies" from Long John Silver!! when i was a kid, you could just buy a side of crispies (left over fried breading".... and ive been feeling so much better- that im starting to get that false sense of security- like maybe i could handle one meal with a gluten cheat... but the last time i did that, i almost threw up.

anyways- try not to stress- it sounds like you have a very supportive husband :) and making the house gluten free can be easier than it sounds...

i follow this girl on twitter- she's gluten free & fructose free... and she's made the whole house gluten free- her family is fine with it.. here's a link to her blog- she's got a lot of recipes on there, she's always cooking & baking for her family

Open Original Shared Link

SuperMolly Apprentice
SuperMolly
Posted
  • Author

It just takes time to learn how to deal. If you would absolutely go gluten free for your family if the roles were reversed, why not "let" them do the same for you?

Isn't it better for your kids to have a healthy, happy Mom? Your husband is supportive, and I would bet your kids will be, too.

I've been at this for almost 2 years already. Will I ever get used to this lifestyle?

My husband and 2 oldest kids are supportive of going gluten-free at home, my middle 2 keep telling me how unfair it would be if they can't eat gluten at home. How do you deal with that?

Thanks for the encouragement. It is nice to know I'm not the only one living with this.

SuperMolly Apprentice
SuperMolly
Posted
  • Author

I handle living gluten-free by hanging out here! I got really sensitive like you are and started to think I was losing my mind. I have a couple friends who are gluten sensitive, but they don't have to worry about crumbs the way I do.

I can totally relate with you. I think I'll start "hanging out" here more often.

Thanks for your support!

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

Celiac.com Sponsor (A8-M):


SuperMolly Apprentice
SuperMolly
Posted
  • Author

Since your DH is willing to do the whole house gluten free that is a hint that your glutening may be affecting the household more than you realize. Take him up on it.

I guess I never thought of it that way. Thanks for pointing that out to me.

SuperMolly Apprentice
SuperMolly
Posted
  • Author

i understand the "poor me" thing totally. ive been feeling so much better- that im starting to get that false sense of security- like maybe i could handle one meal with a gluten cheat... but the last time i did that, i almost threw up.

I do feel so much better and am starting to think a little cc won't really matter. My friends point out to me how sick and how horribly thin I was when I was finally diagnosed. It's easy to forget how terrible that was when you finally feel good. Sometimes I think I should consume some gluten so I will get really sick and not want to be lazy anymore. Stupid.

SuperMolly Apprentice
SuperMolly
Posted
  • Author

Besides, with a celiac mom gluten is not necessarily good for your kids. Limiting their exposure to it is not a bad thing health-wise. Remember they are all at risk for celiac because you have it.

I have had my 5 older kids tested...one was tested twice, and they were all negative. I am still surprised none of my children have celiac disease. I realize it can show up at anytime, so it would be good for them to not consume as much gluten. Thanks for the encouragement. :)

Skylark Collaborator
Skylark
Posted

I've been at this for almost 2 years already. Will I ever get used to this lifestyle?

My husband and 2 oldest kids are supportive of going gluten-free at home, my middle 2 keep telling me how unfair it would be if they can't eat gluten at home. How do you deal with that?

You and your husband gently and firmly tell them that the rules are no gluten. I always got "be grateful you have food in your belly and a roof over your head" when I complained about a household rule I didn't like. ;) You and your husband are in charge when a major health decision needs to be made, not your kids. It's not "fair" that you have celiac, but things could be a lot worse and coming home from school to a home cooked gluten-free dinner is not exactly a hardship. Your two older kids will set an example, which will help.

rtc Apprentice
rtc
Posted

You and your husband gently and firmly tell them that the rules are no gluten. I always got "be grateful you have food in your belly and a roof over your head" when I complained about a household rule I didn't like. ;) You and your husband are in charge when a major health decision needs to be made, not your kids. It's not "fair" that you have celiac, but things could be a lot worse and coming home from school to a home cooked gluten-free dinner is not exactly a hardship. Your two older kids will set an example, which will help.

rtc Apprentice
rtc
Posted

Please look at it from the standpoint of what you're getting,not losing.

I was diagnosed as Type 2 diabetic in 1986 and "gave up" sugar

(refined white and brown).Did not go on insulin until last year,

due to age and celiac recovery weight gain.People used to tell me

they just couldn't "give up" sugar...would ask them if they

could "give up" kidney failure,heart trouble,blindness,etc.

It seems that the older you are the harder it is,and that's

understandable.IMO it has to do with acceptance...this is probably

why AA makes their folks get up and say "My name is so and so

and I'm an alcoholic".

Celiac is unfortunately far worse than diabetes IMO.We are

talking about the destruction of the small intestine,cancer and

a lot more bad things here,not just a sugar spike.

Please look upon gluten as poison...that's how I see it (and sugar).

Place it on your no-no list and put safe things on your good list.

And,as the Apostle Paul said,look to the future and forget the past.

There are many wonderful folks here and you're not the only one

in this fix.There are more workarounds today than ever-

you just have to find them.

My concern is also for your children since this stuff is passed on...

they could have the gene and it has not fully kicked in yet.

The more I learn,it seems that too much gluten is not good

for anyone.

But please note,your feelings are completely normal-and

you're not alone.All of us recall the good old days,but

they must remain the old days.

Best Regards...

GFinDC Veteran
GFinDC
Posted

You may be doing your children a big favor if you teach them how to eat gluten free now. Especially if you put them on a whole foods diet. You would be eliminating all the preservatives and food colorings in processed foods for one thing. And also reducing their constant exposure to gluten and soy which is in so many processed foods. None of that is bad for them, and if they did develop celiac later they would be prepared to cope.

SuperMolly Apprentice
SuperMolly
Posted
  • Author

Please look at it from the standpoint of what you're getting,not losing.

There are many wonderful folks here and you're not the only one

in this fix. But please note,your feelings are completely normal-and

you're not alone.All of us recall the good old days,but

they must remain the old days.

Thank you everybody for your encouragement. I still feel overwhelmed, but my hope has been renewed. :)

It is nice to know I'm not alone in this.

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
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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.