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

Upper Middle Pain.. Gluten Contamination What To Do?

kibou

By kibou
in Coping with Celiac Disease

Recommended Posts

kibou Rookie
kibou
Posted

After a stool sample saying i was gluten senstive i stopped eating gluten and though it took awhile i was relieved of many symptoms. I still had cramps here and there that were severe but they didn't seem to last as long ect.

well after some events and learning i was no fun all i did was stay indoors and my friends wanting to be able to have funa nd go to the olive garden without feeling bad looking at me.. i decided to be brave and even though i knew the red lobster was a no no and certainly not gluten friendly.. i thought i don't care! i'm gonna have fun damnit! how much gluten could be in steamed crab legs anyway.

I shared an order or stuffed mushrooms. I reread it over and over and knew it was risky and made sure my friend ate it first and asked if it tasted bready (broiled mushrooms stuffed with cheese lobster and crab..i thot not much room for them to add anything else)

well after the appetisers of which i ate maybe 5 tiny mushrooms i knew something tasted.. i dunno good? lol and even tho i had gotten a fruity drink from there..well the room got wavey like iw as drunk which scared me a little... one sip of a watered down fruit pina coloda thing couldnt have gotten me drunk right? but when the crab came i got over myself and was determined to have a good time and felt better.

well that was several days ago.. maybe 4.. and since then it has felt like there is a ball glued inside my chest.. middle upper .. right between my loer ribs.. it hurts is a weird way. i lept up in panic all night tonight.. starting to lose it /sigh..

I figured maybe i was intolerant and not have celiac (yeah i know no more tests please rather just live without).. but dang it hurts.. and oh i fergot to mention i consequently looked up the recipe for lobster stuffed mushrooms and they all have oyster crackers)

I figure well even if i screw up i'll have pain but it will pass through my system.. but several days later it still feels so high in my tummy for such a tiny amount of gluten...

what do you do if you ingest gluten? how do you get the pain to stop or pass through.. heck even my heart/chest is starting to hurt.. do i have to start all over again and it will be MONTHS before i start to feel better again? .cry

i'm tired of being so sick and everyone being sick of me.. ive lost my husband over this because i cant go out and have fun and he says this is not how he wants to spend his life while he's young. im sick of this!

ok small rant

anyway.. is this common.. usually i get severe cramps and have to run to the bathroom (still do even tho gluten free just cut down by 90%.. but this mid upper pain is driving me nuts.. its like eating its way to my lower sternum :(

i dont have a car or dr as i just moved here.. and im sure they'd make me swallow a camera anyway.. not something m interested in doing just to tell me yah its inflamed.. im not dumb i can feel theres something wrong

what do you guys do for this pain how long till it will go away? it has taken me forever nearly 7 years to feel this well .. i don't want to start over

btw if you might know why i still get cramps now and then let me know too.. i keep a pretty good diary and i know my body hates any type of oil..but sometimes it does it just randomly.. pretty soon ill have nothing left to eat..

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

Just a suggestion: having a person without gluten intolerance taste something is not a test of whether it is gluten-free. Stuffed mushrooms you would order in a restaurant always contain a substantial amount of bread crumbs and/or flour.

If you are going to eat out, you need to go prepared to only eat the things you know are safe, not merely avoiding the things you are positive are unsafe. If you're not sure something is gluten-free, you can assume it is not.

Soo B Newbie
Soo B
Posted

I hope you come around and start feeling better soon. On a semi-related note:

ive lost my husband over this because i cant go out and have fun and he says this is not how he wants to spend his life while he's young. im sick of this!

If you litreally lost your husband over you needing to go gluten-free, you lost nothing but dead weight. You deserve better than that.

Archived

This topic is now archived and is closed to further replies.

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.