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

Help -- Feeling Kind Of Abandoned


eleep

Recommended Posts

eleep Enthusiast

I want to get out of town and have a vacation -- I really need to get away and I've got a week between summer and fall terms to travel. I want to go home and visit my family -- but my stepmother (who I love dearly) is really scared and concerned about all the cross-contamination issues and worried that she's going to gluten me.

I'm trying my best to reassure her over email that I'll eat my own sandwiches and do everything I can to take any hassle off of her, but I have to admit that I'm having a tough time with this -- lots of tears as I type. I'm kind of afraid (no matter how irrational this is) that I have no more family or home to go to for refuge -- the family that I was trying to build with my boyfriend is gone and my own family is also resistant and distant.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Erica--Sorry you're feeling so badly :( As we know, it takes time to recover from a breakup--you were together for so long. Add to that a diagnosis that further causes changes, and that's a lot to deal with! Your step-mom sounds like she is afraid of another unpleasant visit. Now that you are stable with the diet (I assume you are), I would just go and she will see for herself that your moods are better now. Maybe write her a letter explaining how the gluten affected you, and assure her again that you are better. A vacation with loved ones would probably be very good for you right now. Hope it works out for you :)

eleep Enthusiast

Thanks -- you're right and that helps -- I actually just got off the phone with my stepmom and I think things will be fine. I'm a little prone to freaking out these days -- it helps to be able to vent on this board.

jerseyangel Proficient

I'm glad you talked with your step mom. Feel free to vent here anytime--we all understand. Take care :)

Fiddle-Faddle Community Regular

Could your stepmom go out-of-town with you during your vacation? Maybe you could have a really nice Gal's Time Out!

queenofhearts Explorer

Erica, I hope you have a great vacation with your family. It may take some adjusting, but it sounds like you are both willing to work to make things better this time. You've been really strong dealing with the bf, & everyone gets worn down now & then!

Relax & recharge, you'll feel better.

Leah

jesscarmel Enthusiast

Hi Erica,

I'm sorry that you are feeling so sad right now. Being diagnosed and getting used to everything is so stresfull. even with a good support system, i have at t imes felt misunderstood and unsupported. i hope that you end up having a good trip. it sounds like you have been really strong to be able to deal with being diagnosed and ending a relationship. i hope you have good friends to hang out with!

Jess


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



Celiac.com Sponsor (A8-M):



rinne Apprentice

I'm so sorry you are having a hard time, what a lot to deal with all at once. I'd be weeping too.

I hope the time with your family gives you what you need. Take care, be kind to yourself and remember what Dr.Yan says," we must love life".

tiredofdoctors Enthusiast

Hi Erica -- I'm so sorry you're having difficulties. I know that it's cold comfort, but you're not alone . . . all of us, at one time or another, have had difficulty with starting the diet, adapting to the cooking, worrying about family, cross contamination, and on and on and on . . . . I think that it's actually part of the process of fully accepting the disease. It sort of makes the reality "kick-in" a little stronger. Sometimes that's good, sometimes, it's devastating.

What I really want you to know is that, you have such a powerful resource with the people who are on this forum. I don't know what I would have done without them, early, mid and even now in my disease process. They are the most kind, compassionate, knowledgeable and generous people you will meet. I want you to know that you can vent anytime . . . I don't know that there's one of us who have been on here for awhile who hasn't vented at least oh, say, 10,000 times! Just kidding. But yes, I think we all have vented at least once. It's great when we're here for the good stuff, but just as importantly, please know that we're here for the bad stuff, too.

Take care of you.

Hugs,

Lynne

taz sharratt Enthusiast
I'm trying to hold up and keep my spirits up, but I'm having kind of a hard day today. My 5 and a half year boyfriend left me just after the diagnosis (there's more to the story -- he's got some issues himself -- my earlier posts say more about that) and I've been trying to deal without him around -- doing pretty well and not leaning on him or anything, although I was sending him emails for a while even though I knew it was a bad idea.

One of my biggest obstacles has been adapting to the fact that I'm cooking for one -- and that there are all these new cooking and eating things to learn -- it's been tough eating with a loss of appetite from the breakup and, also, a large part of our relationship was based on the fact that we both loved to cook and eat together -- there were two of us to split that work for a very long time. Every few days or so, I lose a little spirit and can't bring myself to cook dinner until I'm already really hungry and anxious and this sets off a new wave of grief.

I really just want to get out of town and have a vacation -- I really need to get away and I've got a week between summer and fall terms to travel. I want to go home and visit my family -- but my stepmother (who I love dearly) is really scared and concerned about all the cross-contamination issues and worried that my visiting will be like my last terrible visit -- which was just before the diagnosis when I had an inexplicable bad temper, anxiety and panic attacks.

I'm trying my best to reassure her over email that I'll eat my own sandwiches and do everything I can to take any hassle off of her, but I have to admit that I'm having a tough emotional time with this -- lots of tears as I type. I feel lost and isolated and scared from this whole breakup/celiac thing happening all at once -- and I'm so afraid (no matter how irrational this is) that I have no more family or home to go to for refuge -- the family that I was trying to build with my boyfriend is gone and my own family is also resistant and distant.

know where your comeing from, i lost my dad a couple of days before the diagnoses came through for me, the 2 together was enough to make me think ide lost the plot, i had family and good friends around me to help, go be with your family you need them and im sure after a little time your step mum will be able to get her head around the cc, keep your chin up girl

GFBetsy Rookie

eleep -

Another thing that will probably help your stepmom is if you send her some recipe ideas that are "naturally" gluten free - veggie soups, burgers, baked potato bar, etc. You can also let her know the brands of cereals, etc. that you can eat. Then she won't have to worry about having nothing to feed you, and that may help her feel less stressed about the whole visit.

Hope you get to have an enjoyable time at home!

AndreaB Contributor

eleep,

I agree with everyone else. It is very difficult to adjust to a breakup on top of celiac but not impossible. Your visit with your stepmom could be just what you and she need.

We are all here for you. Even though cyber friends aren't the same as having a real live person on your couch visiting with you, we love you and support you. :)

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 Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    2. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Airborne Gluten?

    3. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

    4. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,240
    • Most Online (within 30 mins)
      7,748

    TwinJan
    Newest Member
    TwinJan
    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

    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
×
×
  • 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.