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 To Vent


Diosa

Recommended Posts

Diosa Apprentice

I just needed to get this off my chest.

We had a barbeque over here last night. I am always careful about keeping a gluten-free kitchen. One of my friends is pregnant and was craving chips and dip. The dip was a powdered one with gluten. Ok, no problem. Just prep and eat that outside. Chips were just potatoes oil and salt so no issues there. I decided on roasted carrots and a chocolate flourless cake (gluten-free and dairy-free, but a TON of eggs) with raspberry syrup. For the main course I prepped a steak with hmemade steak rub. The others brought marinades. One was homemade, the other was one of those premade, in a ziplock baggie ones that clearly state allergens of wheat, soy and fish. I have problems with both heat (duh) and soy. The other I didn't know what was in. They decided to reduce both sauces down in the kitchen. :( The homemade ne had soy sauce in it so yet more wheat and soy being vporised in the kitchen. I've gotten to the point of even air-bourne makes me feel sick, nauseous and in severe pain. I was doing other prep work so by the time they started this it was too late.

No they are mad at me for saying something and asking them to *please* be careful and that no gluten can be brought into my house at all. Am I out of line for this?? Am I out of line for asking them to be considerate of my gluten-free kitchen and that I don't want to get sick in my own house?? Especially when I'm at less than 2 weeks to my wedding? I ended up missing a day of work, even though we are already short-staffed, due to the pain and the need to be close to the toilet.

Any time I get glutened the effects are get worse and it takes less to affect me. I didn't use to be affected by air-bourne, but I am now and it's as bad as if I had ingested it. I was in the UK for a month and was really careful there til I got to Wales then I spent the whole week sick. Started with the hubby-to-be's mum making bread, restaurants that didn't listen to my request of no dairy, no flour and mystery chips that were coated in flour.

The damage seems to be getting worse as well. My hair is falling out, I'm taking multi-vitamins and eating fruits and veggies and taking calcium supplements, but it doesn't seem to be helping. Food I could eat before my trip to Wales I'm having trouble with. Because it's here I can say this: :) Beans, which were *never* an issue, now come out the way they went in. That's never been the case.

I feel like a prisoner of my body. I honestly thought about calling the wedding off so that my fiance, who I love more than life, isn't trapped in this existence. I've been trying so hard to adapt and adjust to this disease, but I feel like it's winning. My friends don't want to come over now, unless it's strictly a meat and veg affair. I can't go to their place when they cook as something *will* have gluten in it: bread, dumplings, pasta etc. I'm sure anyone reading this knows what Im talking about and may be aable to relate to this. I'm feeling really alone and just don't know where to go now.

Thanks to anyone who read this. I appreciate it more than you know.


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Beth-

Were these your close friends who came to the cookout? If any of my friends were Celiac and I wasn't I would totally respect their wishes--and it would seem like a small price to pay to care for my friend. You are not wrong in your request. If you get as sick as you say--then you are totally justified! I am so sorry your friends were not as sensitive and respectful as they should be. Do they know how sick you get? Can your fiance help get your requests across to others also? I will be praying for a quick recovery and wonderful wedding... It sounds like you love him very much--don't call it off! As a friend of my dh and mine always says...even when its hard, life is better together :) If your fiance still desire to support you and be with you, I'd say hang on to him! Remember, he has the ability to leave if that's what he felt. How long have you been gluten-free? I have been for 7 mos and have made only little progress. I was talking to a wise nurse practioner recently who has Celiac and was diagnosed 10 years ago. She feels 2 years is a reasonable waiting period for healing--that for many it can take that long to feel normal. You sound like Donna bit...one of those who are incredibily sensitive...so try not to feel guilty when you request certain things from friends or family. It is only by the grace of God that they do not have Celiac themselves--and they aren't the ones asking you for help. I hope hope hope you feel better soon...and that it is a LONG time before you come near gluten again. I also hope you can enjoy these last few weeks before the wedding--what a wonderful thing!!

Nicolette Rookie

I know its hard, but try to stay positive. You fiance sounds wonderful and if he didn't want to be "trapped" by your celiac disease then he would have said something by now. I'm sure he loves you, celiac disease and all. Unfortunately, one of the aspects of this dietary change, means that every time you do get glutened, it takes longer for your body to recover. I know its easy to say, but you just have to be extra careful, especially in the run-up to your big day, which I hope goes truly wonderful for you both.

All the best,

Nicolette

aaascr Apprentice

All of the above...

and for my hair loss, taking biotin really helped!

Best wishes,

KaitiUSA Enthusiast

You know we really find out who our friends are through times like this. Those people who you say got mad at you had no reason to. You had every right to do that. We don't allow gluten in our house either and we make the food when people come over...it's just not worth the risk. I am super sensitive even to airborne as well(I have a wheat allergy in addition to celiac too)

If anything, I think you are the one who should be mad at them. Some people do not realize how insensitive they come across. If they don't want to come over then find friends who do want to. I mean there are a number of things they can do when they come over besides things to do with food...they could always make gluten free stuff when they are over there at your place. I mean who are they friends with here...you or the gluten? lol...I mean it sounds like they ditched you for food. Real friends will attempt to understand and try to help you in every way possible and not make you feel bad or like an outsider.

Your fiance sounds like a wonderful person who really loves you. If he didn't want to be with you through everything he could have bolted by now. He wants to be with you even when the going gets tough...him sticking by you through all this shows that. You both deserve to be happy so don't ruin that over something that will eventually be worked out.

You will find it gets easier and I hope it starts to get better for you real soon.

Carriefaith Enthusiast

I am sorry that you had to go through that :( I would be really upset if my friends treated me that way.

laurelfla Enthusiast

i'm so sorry, Beth!!

just remember, you are a princess and you deserve to have the very best wedding day!

your friends sound kind of suspect to me. :( i hope that you are feeling well and don't have any more gluten problems. i'll be thinking about you!

Laurel.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,033
    • Most Online (within 30 mins)
      7,748

    davidvibezb
    Newest Member
    davidvibezb
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.