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

By Diosa
in Coping with Celiac Disease

Recommended Posts

Diosa Apprentice
Diosa
Posted

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
jenvan
Posted

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
Nicolette
Posted

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
aaascr
Posted

All of the above...

and for my hair loss, taking biotin really helped!

Best wishes,

KaitiUSA Enthusiast
KaitiUSA
Posted

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
Carriefaith
Posted

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

laurelfla Enthusiast
laurelfla
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,670
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.