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 Just Need To Vent


alamaz

Recommended Posts

alamaz Collaborator

I went from telling DH yesterday morning that yesterday was the first day since diagnosis that I actually felt good all over. No peripheral neuropathy, no fog, lots of energy, good mood. I ate lunch and when Dh went for an olive with his fingers after making his turkey wrap with regular tortillas I said "you can't do that" but then of course listened to him when he said it wouldn't hurt, one little "potential" crumb and ate an olive out of the bowl. Well, an hour later I felt the headache coming on, later on I had a migraine and this morning the big D made a fierce return. AN OLIVE! It had to be the olive because I ate the same exact lunch that I ate on Saturday and didn't get sick on Saturday. I'm just having a really hard time with this. It's a good day followed by five bad days. ARRRRRRRGHHHHHHHHHHHHH! :( Why do I have to be the one who has to live like this? It just sucks. I'm tired of being sick and I know that eating right will make it all better but it's so hard to be so carefull all of the time. I just wish it was temporary.

Thanks for letting me get it out. I think DH is tired of hearing about it and I don't like to vent to friends and family because, well, they just don't get it even though they try.

Amy

Edited: I should add that DH is trying hard to deal with everything and it just slips his mind sometimes that little things like putting his crumby fingers in a shared container can cause problems. He apologized to me and when he saw me sick I think he felt really bad. I guess I should say I'm tired of talking to DH about it because I feel like a burden and like I'm annoying. I know I shouldn't feel that way but I guess I'm tired of hearing about it myself.....


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

DH may not want to hear about it, but he NEEDS to hear about it this time ... he needs to know you are sick and it's from that olive he insisted on touching. Contamination will cause the immune reaction. Think of it like the flu -- "Oh, you were only exposed a little bit!" Well, it doesn't matter if it's a little or a lot, you still get it! Or think of it like salmonella, would you have worried if he had salmonella on his hand? Would he? Would you ever say it's only a little bit when you're talking about a bacteria?

Most of us are less afraid of bacteria than we are of gluten!

Blow off steam here, then talk with him with a level head until he understands. It doesn't matter if he's tired of it, it's the hand both of you were dealt, you've got celiac, and he has a wife with celiac. It is his problem, too.

sfm Apprentice
I went from telling DH yesterday morning that yesterday was the first day since diagnosis that I actually felt good all over. No peripheral neuropathy, no fog, lots of energy, good mood. I ate lunch and when Dh went for an olive with his fingers after making his turkey wrap with regular tortillas I said "you can't do that" but then of course listened to him when he said it wouldn't hurt, one little "potential" crumb and ate an olive out of the bowl. Well, an hour later I felt the headache coming on, later on I had a migraine and this morning the big D made a fierce return. AN OLIVE! It had to be the olive because I ate the same exact lunch that I ate on Saturday and didn't get sick on Saturday. I'm just having a really hard time with this. It's a good day followed by five bad days. ARRRRRRRGHHHHHHHHHHHHH! :( Why do I have to be the one who has to live like this? It just sucks. I'm tired of being sick and I know that eating right will make it all better but it's so hard to be so carefull all of the time. I just wish it was temporary.

Thanks for letting me get it out. I think DH is tired of hearing about it and I don't like to vent to friends and family because, well, they just don't get it even though they try.

Amy

Edited: I should add that DH is trying hard to deal with everything and it just slips his mind sometimes that little things like putting his crumby fingers in a shared container can cause problems. He apologized to me and when he saw me sick I think he felt really bad. I guess I should say I'm tired of talking to DH about it because I feel like a burden and like I'm annoying. I know I shouldn't feel that way but I guess I'm tired of hearing about it myself.....

I think sometimes we forget how easy it is to get "second hand gluten" - let alone our loved ones... But I think it's important to make them understand (although it sounds like your husband does understand a little more, now). My children have realized over time how serious it is - I think when my daughter walked in on me vomiting after serving them regular pizza and forgetting to wash my hands afterwards, she realized how dangerous gluten is for me. :blink:

I have a hard time explaining to people how sick I get - I don't want to seem 'high maintenance' or be a bother. I travelled recently, and visited my boyfriend's sister in Florida, and when we got there, I found out that he had not thought to tell her that I have a problem with gluten, so she didn't even have the opportunity to prepare for it. And she was so nice about it, but I felt so uncomfortable because he hadn't even mentioned it, and I had to go over the "rules" for food prep. :unsure:

Hang in there... unfortunately it isn't temporary, and we have to ultimately look out for ourselves. Anything I eat in my house is in a separate jar or package, with "gluten-free" marked in permanent marker - and my children know they have to be extra careful, or not eat it at all. So I have my own peanut butter, my own sliced turkey, my own mayo. It makes it a little easier to be sure. ;)

But it all takes time to get used to, and being so vigilant can be exhausting. My daughter will not drink from my glass if she has had wheat. My boyfriend will not kiss me if he has just had wheat, until he drinks something to rinse his mouth. I'm sure your husband is trying, like you said, it is just difficult for him to understand how dangerous it is.

I guess you get used to it in time (I'm still working on that.. :blink: ).

Sheryll

aquamarine-queen Rookie
I guess I should say I'm tired of talking to DH about it because I feel like a burden and like I'm annoying. I know I shouldn't feel that way but I guess I'm tired of hearing about it myself.....

I know I'm still in the stage where this seems to be all I talk about with my husband, and like you, I'm tired of talking about it. Every other day it seems I'll bring it up just to keep all the "rules" fresh in his mind. Just last night as he was preparing himself a snack, I caught him slicing a wheat muffin near my gluten-free toaster and yelled "don't you dare slice that muffin anywhere NEAR my toaster!" and cringed as soon as the words were out of my mouth. For the most part, he's been very good about everything but he's a forgetful sort of person (always has a lot on his mind) that I know I'm going to need to nag him forever. And I really don't want to be that wife, but there isn't any other choice. :(

AquaQ

CarlaB Enthusiast

We all eat gluten-free at home to avoid those situations. I have six kids, and three of us are gluten-free. I make naturally gluten-free dinners. Sometimes I use Tinkyada Pasta.

When we have pizza, we have it delivered and cook a gluten-free one in the oven. Any gluten leftovers go outside to our spare refrigerator in the garage. We also keep some gluten bread in the garage refrigerator for our teenage son who prefers it (no one else cares so they eat the gluten-free stuff). My son knows that if he ever "poisons" any of us one time, it will be the end of the real bread.

I'll buy regular buns for when we cook out, but at this point, everyone is used to eating their hamburger with no bun, so most of the time, they don't want the bun at all.

All the gluten eaters eat gluten regularly when they are away from home.

Also, we make very few sandwiches, so we go through little bread. It's mostly for when we have eggs or when someone wants a piece of toast.

This has saved us from contamination. It makes the home a safe spot and prevents mistakes from happening.

alamaz Collaborator

I'm getting frustrated with myself for making mistakes and at myself for having this which - I know- it's not my fault - but I just hate it. I'm super stressed at work right now so the only time I'm home is to cook and then I'm racing back out the door and I'm taking my first gluten-free trip next week with the girls and I'm really contemplating canceling. I don't want to get sick while I'm away and it's so embarrassing when I do get sick that I'll be devastated if it happens when i have to share a hotel room with any one other than my husband. Ugh. my husband has offered to go gluten free at home and i think i might take him up on that for now. atleast until we get everything more organized and stuff. i'm really on the fence about my trip though. i REALLY want to go but i REALLy don't want to get sick/have to stress about it.

Tree Rookie

Our home is gluten-free, too. I can't afford to be constantly on guard, and nagging my loved ones, in my own home. It's expensive, but the results are that it's very, very rare for my dd to be glutened, and I've been "unpoisoned" since my dx last October. That, and I don't need to "police" anybody.

We all eat gluten-free at home to avoid those situations. I have six kids, and three of us are gluten-free. I make naturally gluten-free dinners. Sometimes I use Tinkyada Pasta.

When we have pizza, we have it delivered and cook a gluten-free one in the oven. Any gluten leftovers go outside to our spare refrigerator in the garage. We also keep some gluten bread in the garage refrigerator for our teenage son who prefers it (no one else cares so they eat the gluten-free stuff). My son knows that if he ever "poisons" any of us one time, it will be the end of the real bread.

I'll buy regular buns for when we cook out, but at this point, everyone is used to eating their hamburger with no bun, so most of the time, they don't want the bun at all.

All the gluten eaters eat gluten regularly when they are away from home.

Also, we make very few sandwiches, so we go through little bread. It's mostly for when we have eggs or when someone wants a piece of toast.

This has saved us from contamination. It makes the home a safe spot and prevents mistakes from happening.


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



Celiac.com Sponsor (A8-M):



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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

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

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      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
      8

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

  • 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

    • 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! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • 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.