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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,406
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.