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

So Frustrated...

SmnthMllrX

Recommended Posts

SmnthMllrX Newbie
SmnthMllrX
Posted

My boyfriends family decided they want to have us over for dinner again. Most of the time when we go I bring my own food an I cook mine before everyone starts to cook theirs. Sometimes I get sick from CC and sometimes I don't. Lately I have been. So this time his brother (whom we don't see that often) wants to have us over and wants to buy all the dinner so I'm not supposed to bring anything. This is thoughtful. So when he asks my BF what he should get I went with the safe grilled chicken and some baked French fries. My BF goes through all the trouble to tell his brother to clean the grill well and to wash everything first. But when I asked what they would be seasoning the chicken with my BF said 'I don't know' and when I asked if he could tell his brother to make sure it's gluten free seasoning he replied 'he doesn't read labels and s$#&' and when I said that didn't work out very well for me he said that it shouldn't matter because I usually get sick when I eat at his familys place anyway. Then he suggested that I make potato salad as a side and just eat that for dinner if I'm so worried about it. AM I BEING CRAZY? I mean seriously am I being OCD or something? I don't feel like I am. I don't want to tell him that I don't want to go to his family functions because then his family is not going to like me very much. Anyone got anything I can say besides the obvious that gets my point across that will keep me from sounded like a crazy person?

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

Celiac.com Sponsor (A8-M):


GFreeMO Proficient
GFreeMO
Posted

Why don't just go and have a good time and bring your food cooked by you from home. This way, everyone is happy and you wont get sick.

~**caselynn**~ Enthusiast
~**caselynn**~
Posted

Why don't just go and have a good time and bring your food cooked by you from home. This way, everyone is happy and you wont get sick.

I have to agree, bringing your own from home is the safest bet, I do this frequently. How about you call the brother's significant other and offer to bring something? I'm forever taking atleast a salad, that way I know I can eat whatever I bring. I've learned the hard way a couple times, so now I just make sure there is always something I can eat. Lol

mamaw Community Regular
mamaw
Posted

GFreMo has a great suggestion. But for me I would be considering this relationship before it goes to the next level.I would be having a serious talk with him to make sure he understands celiac. There is no cheating, no its not okay if you get ill once in awhile.He needs to be with you on this all the way not half time only...

Educate the family & if they don't care then I would start looking for a new mate who cares enough to understand & take it as a serious illness...

hugs

RonSchon Explorer
RonSchon
Posted

I know my advice is probably outside the basic parameter of the question, but being a newly diagnosed celiac disease and having my wife of 17 years divorce me because I was always tired and sick, you need to fix Mr. Boyfriend right now, or get rid of him. We live with an INCREDIBLE amount of stress, or at least I do. I need somebody that likes me enough to be as concerned about my well being as I need to be about my well being.

If he knows you are poisoned by gluten, and then glutens you, it sure seems like assault to me.

My 2 cents,

Ron

SmnthMllrX Newbie
SmnthMllrX
Posted
  • Author

I was going to bring my own food and I'm happy to bring my own food because it is worry free for me. But when we were invited it was they invited us and they would be making all the food. I made some progress with him and he asked his brother not to prepare or cook any of the food until we get there. My boyfriend understands how sick I get and he is actually totally gluten free when we are having any kind of a meal or snack together. If we eat out he always orders gluten free even though I've told him he doesn't have to. It is just so annoying because it is almost like he is embarrassed to tell his family members that they have to read labels. They invited to make us dinner and them knowing I have to be gluten free I would assume they would go out of their normal cooking regimes to make it gluten free. It's almost like he doesn't want to hassle them which I don't understand. I don't believe I am asking for too much here right?

kareng Grand Master
kareng
Posted

I think you are asking too much to expect people who don't understand Celiac disease to cook safely for you. They may pick out things that seem, and maybe even are, gluten free. but.... They have never had to think of things like " Don't strain the potatoes for potato salad in the old pasta colander". And " soy sauce or teriyaki have wheat in them.". They may think its Ok to take the burger off the bun or stir the rice with the couscous spoon. Basically, they don't know what to do to cook safely for you.

Bring your own, ready to eat food. Tell them is so nice to want to cook for you but you would never want them to have to go to sooooo much trouble. Then, have them to your house and cook for them. Or suggest a restauraunt, like PF Changs, that you can eat at safely.

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

Celiac.com Sponsor (A8-M):


SmnthMllrX Newbie
SmnthMllrX
Posted
  • Author

You're right. When you put it like that I see I've been being irrational about this whole thing. It's strayed away from being about what I can safely eat to me just being moody I guess. I suppose I'll go and just try to enjoy myself and see how it turns out.

kareng Grand Master
kareng
Posted

You're right. When you put it like that I see I've been being irrational about this whole thing. It's strayed away from being about what I can safely eat to me just being moody I guess. I suppose I'll go and just try to enjoy myself and see how it turns out.

It's Ok to be a bit mad or sad that we can't participate. My hub is taking the boys to a bar we liked to go to pre Celiac. They are meeting up with some other family members and playing pool and eating junk food. I know we can't get safe food for me there, so I decided I would be too unhappy or sad or grumpy watching them eat. So I'm staying home. If I didn't like the food so much, I would just eat first and get some wine.

Family gatherings, I usually take something I like. Or I try to take my version of what they are serving. Or a side dish that I keep a portion safe for me. Something like twice baked potatoes, that can be a meal and I LOVE them!

SmnthMllrX Newbie
SmnthMllrX
Posted
  • Author

Thanks guys. I appreciate all of the great advice and the different points of view.

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

      Are Lindt chocolate balls gluten free?

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

      Are Lindt chocolate balls gluten free?

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

      My only proof

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

      My only proof

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

      Are Lindt chocolate balls gluten free?

      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.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748
    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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.