Jump to content
  • 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):

Glutened Twice In One Week.


DJ Jess

Recommended Posts

DJ Jess Newbie

Oy. I was diagnosed in January and have been 100% gluten-free since then. Last week I was traveling for work and some friends of mine did a TON of research to find a place where we could eat. They found a restaurant with gluten-free pasta and we were all very excited about it. I asked the waitress and she said that one of the owner's family members had celiac so that felt reassuring, though I did have some concern about the strainers used to strain the pasta. For some reason I didn't speak up about that part.

Well, an hour after the meal I got all the abdominal symptoms. Mine don't include the big D, but I get very tight, it hurts a LOT and I get extremely bloated. My theory is it must have been the strainer used? I will call them and let them know.

Then, the day after I got home from my trip it was my birthday and one of my employees was really excited to bring me in a 'gluten free' cake from a local bakery. (We live in a really progressive area so I did trust that this place would be handling things right.) It was a flourless chocolate torte thing and VERY VERY good.

An hour later, bam, same symptoms as usual/the other day. My theory this time is that maybe the used regular flour to flour the pan. Who knows - clearly there is some cross contamination that happened and I'm going to call them tomorrow to find out what it could have been.

So the downside of all that is clearly the pain and discomfort but also it makes me even more afraid to eat out. The upside is that my boyfriend REALLY gets it about the CC issues. I'm not saying he didn't before, but we hadn't had it happen so we weren't sure how sensitive I'd end up being, etc. Having him see how much pain I was in from the cake at work really brought it home I think.

The day after it happens the pain is gone but I have the big C and am very bloated. The day after THAT is when the itchiness start happening.

Anyway, I don't know what my question is, just wanted to share in case it helps someone, since we all are always learning about this. Today I feel fine. :)


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



Celiac.com Sponsor (A8-M):



Luddie Newbie

Then, the day after I got home from my trip it was my birthday and one of my employees was really excited to bring me in a 'gluten free' cake from a local bakery. (We live in a really progressive area so I did trust that this place would be handling things right.) It was a flourless chocolate torte thing and VERY VERY good.

An hour later, bam, same symptoms as usual/the other day. My theory this time is that maybe the used regular flour to flour the pan. Who knows - clearly there is some cross contamination that happened and I'm going to call them tomorrow to find out what it could have been.

From what my doctor says, there is a lot of new research showing that there is appreciable amounts of gluten in things that were thought to be safe, so the cake may have been made with some of those ingredients. Sorghum is one thing. I'll try to get the website that has the chart with all the figures on it. Also, some people are so sensitive to gluten that even if it's <5 ppm they can be affected. Bummer!!

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. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      1

      Celiac flare years after diagnosis

    2. - knitty kitty replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Skin issues

    3. - nancydrewandtheceliacclue posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac flare years after diagnosis

    4. - nancydrewandtheceliacclue replied to lehum's topic in Super Sensitive People
      15

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    5. - Parkrunner commented on Scott Adams's article in Spring 2025 Issue
      1

      How Celiac Disease Impacts Bone Health: What You Need to Know

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,043
    • Most Online (within 30 mins)
      10,442

    nancydrewandtheceliacclue
    Newest Member
    nancydrewandtheceliacclue
    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

    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
    • knitty kitty
      @Jmartes71, Been here.  It's okay.  You're not imagining things, but there's no bugs or parasites in your skin.  The cats are not infecting you with anything.  That's a hyperkeratotic plug that builds up in a hair follicle which does go deep and is attached by the hair sheath that looks stringy.  It's a type of thing seen commonly in Dermatitis Herpetiformis.   Niacin B 3, in the form Nicotinic Acid (active form that causes flushing) or in the form Niacinamide will help immensely with clearing this up.  Take 100 mg three times a day, and Tryptophan (another form of Niacin) to help you sleep and heal your intestines at night.   Kidney stones can result when the body doesn't have sufficient Thiamine B 1.   Are you taking a B Complex supplement?  The eight B vitamins are water soluble.  Many people with Celiac Disease benefit by taking a B Complex to boost absorption.   The cloves are great because they can reduce inflammation, but your body needs the Bs and extra Niacinamide as well.  Benfotiamine, a form of Thiamine B 1, is also needed in higher doses to heal the intestines.  If you get your intestines calmed down, your skin will calm down, too.  Benfotiamine has anticancer potential in higher doses. Rapid resolution of delusional parasitosis in pellagra with niacin augmentation therapy https://pubmed.ncbi.nlm.nih.gov/19061687/ Tryptophan metabolism: From physiological functions to key roles and therapeutic targets in cancer (Review) https://pmc.ncbi.nlm.nih.gov/articles/PMC12139378/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • nancydrewandtheceliacclue
      Hello everyone! I am very glad to be a part of this group. I want to share a bit about my celiac journey and hear from you as well. I was diagnosed when I was around 19-20 with a confirmed blood test and biopsy. I am now 28 and since my diagnosis, I have been strictly gluten-free. I have discovered over the years many new intolerances to foods, not to mention bad joint pain and skin issues, which led me to going on the carnivore diet. I don't eat dairy, sugar, or grains, except for rice/rice flour crackers, which seems to be the only substitute I can tolerate. I feel pretty good most of the time, but every so often I have what I consider to be a "celiac flare", which always follows the same pattern: I get a mild stomachache that gets progressively worse, followed by nausea, vomiting, and severe abdominal pain that lasts hours. What is strange to me is that I didn't have as severe symptoms as I do now before my celiac diagnosis, when I still actively eating gluten, even though I felt crummy and had synotoms. Has anyone else experienced symptoms like this? I am so careful with what I eat and I never eat out. As I was looking around on the forum here, I found a post where someone asked about airborne gluten and subsequent reactions. My mom likes to feed the birds bread, and I was helping her toss bread around. Could even touching gluten or breathing it in result in a reaction like what I had? I wash my hands and keep everything separated in the kitchen, of course. It is just very frustrating, because I am so careful and when I have these flares, the pain is debilitating. Any advice or experiences you have had would be greatly appreciated. Thank you and God bless. 
    • nancydrewandtheceliacclue
      I am currently 28 and was diagnosed when I was 19-20.  I am strictly gluten free and dairy free, grain free etc. I just had to say that I had a horrible reaction to quinoa when I tried it as an alternative. It was certified gluten-free quinoa noodles. I couldn't even finish the bowl of food before I started to feel sick. I had trouble breathing and threw up. It was one of the most severe reactions I have ever had, so I have never eaten it again. Since cutting out gluten, I feel that over the years I have developed new intolerances to foods. I eventually went on the carnivore diet which helped me a lot. I no longer have joint pain and my skin is better. I would recommend trying carnivore, because even foods that you think aren't affecting you could be, especially sugar, natural or otherwise. 
×
×
  • Create New...