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

New, Massive Pain When Glutened

Munzie

Recommended Posts

Munzie Rookie
Munzie
Posted

Hi, I'm new and found you all by process of elimination. I was diagnosed with IBS several years ago, but the symptoms got worse and worse. So I started looking for answers. I am not under doctors care, have a ver limited income and no medical. My symptoms were to begin with constant diahrrea, then such severe cramps that I thought I seriously had to go to the ER (which I can't afford). So when I learned about Gluten allergy I went totally Gluten free -which I found to be a big chore- and was feeling really good for 2 weeks. Yesterday we went out to eat and a couple of hours later I felt the cramps coming on again. However at first I couldn't figure out why and was crying, cause I thought I had been wrong about being Gluten allergic. While I was laying in bed, massaging my gut and wracking my brains what it might be, I remembered eating Heinz 57 sauce on my steak and had my friend google the ingredients. So that's where the problem was. It scares me now to eat anything not basic enough for me to know it doesen't contain Gluten! You can't believe the pain -which by the way lasts for hours and leaves me totally drained and weak- and I just want to have it stop for good.  Oh, I also have Fibromyalgia, which I've read is also a symptom of the Gluten allergy. The FM symptoms were much better when I deleted Gluten from my diet.

Does anyone here have any tips for me, what I can do or has anyone experienced such massive pains?

 

Thanks, Dani

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I'm not familiar with the ingredients of Heinz 57 but couldn't find the ingredients on Heinz's website.  Eating at a restaurant has many ways you could get "glutened".  Was it a gluten-free menu?  Did you tell the waiter you needed gluten-free?  Even with all that, mistakes can be made.  Some places don't understand gluten-free and screw up the gluten-free menu - for example - saying French fries are gluten-free when they are fried in shared oil with something non-gluten-free like onion rings.  A waitress taking the bread off the plate before serving you. 

niese Explorer
niese
Posted

I totally understand your pain I had abdominal pain for 2 1/2 months 24/7 dr tried different pain meds on me and nothing helped, I had to learn to deal with it.  Finally after several test and months later found our I had Celiac.  Since going gluten free that pain has left.  I do experience it when I am gluten from cross contamination, I am still new with gluten free and have had mistakes.  Plus I have Colitis so my intestines have a double whammy.  I am still healing so I do still get occasional abdominal pain but its usually around a level 2-3 which I can deal with.

 

Sounds to me since you ate out that you experienced cross contamination.  I agree with what kareng said.  I have only eaten out I think twice and both times was Wendy's only ordered a baked potato, but was scared to death the whole time.  

Hope you feel better soon.

niese Explorer
niese
Posted

Hi, I'm new and found you all by process of elimination. I was diagnosed with IBS several years ago, but the symptoms got worse and worse. So I started looking for answers. I am not under doctors care, have a ver limited income and no medical. My symptoms were to begin with constant diahrrea, then such severe cramps that I thought I seriously had to go to the ER (which I can't afford). So when I learned about Gluten allergy I went totally Gluten free -which I found to be a big chore- and was feeling really good for 2 weeks. Yesterday we went out to eat and a couple of hours later I felt the cramps coming on again. However at first I couldn't figure out why and was crying, cause I thought I had been wrong about being Gluten allergic. While I was laying in bed, massaging my gut and wracking my brains what it might be, I remembered eating Heinz 57 sauce on my steak and had my friend google the ingredients. So that's where the problem was. It scares me now to eat anything not basic enough for me to know it doesen't contain Gluten! You can't believe the pain -which by the way lasts for hours and leaves me totally drained and weak- and I just want to have it stop for good.  Oh, I also have Fibromyalgia, which I've read is also a symptom of the Gluten allergy. The FM symptoms were much better when I deleted Gluten from my diet.

Does anyone here have any tips for me, what I can do or has anyone experienced such massive pains?

 

Thanks, Dani

 

Hi, I'm new and found you all by process of elimination. I was diagnosed with IBS several years ago, but the symptoms got worse and worse. So I started looking for answers. I am not under doctors care, have a ver limited income and no medical. My symptoms were to begin with constant diahrrea, then such severe cramps that I thought I seriously had to go to the ER (which I can't afford). So when I learned about Gluten allergy I went totally Gluten free -which I found to be a big chore- and was feeling really good for 2 weeks. Yesterday we went out to eat and a couple of hours later I felt the cramps coming on again. However at first I couldn't figure out why and was crying, cause I thought I had been wrong about being Gluten allergic. While I was laying in bed, massaging my gut and wracking my brains what it might be, I remembered eating Heinz 57 sauce on my steak and had my friend google the ingredients. So that's where the problem was. It scares me now to eat anything not basic enough for me to know it doesen't contain Gluten! You can't believe the pain -which by the way lasts for hours and leaves me totally drained and weak- and I just want to have it stop for good.  Oh, I also have Fibromyalgia, which I've read is also a symptom of the Gluten allergy. The FM symptoms were much better when I deleted Gluten from my diet.

Does anyone here have any tips for me, what I can do or has anyone experienced such massive pains?

 

Thanks, Dani

Dani,

 

Welcome  aboard! Please check out that newbie thread, you will learn alot there. This is an awesome place everyone understands and is very helpful.  If you have any questions just ask someone will be able to answer or direct you to the answer.  I was so blessed when I first found this site, learned so much and still learning.

 

https://www.celiac.com/pages/Newbie%3F.html

Munzie Rookie
Munzie
Posted
  • Author

Dani,

 

Welcome  aboard! Please check out that newbie thread, you will learn alot there. This is an awesome place everyone understands and is very helpful.  If you have any questions just ask someone will be able to answer or direct you to the answer.  I was so blessed when I first found this site, learned so much and still learning.

 

https://www.celiac.com/pages/Newbie%3F.html

Thanks to all of you :-). It's great to have finally found a place where I'm understood!   I share the anxiety when eating at a restaurant, always break out in a cold sweat when my companion suggests we go out to eat. He is very supportive, even read my new book I got today 'Living Gluten free for dummies', but he thinks I am talking myself into having something I don't :-(.   I understand this, cause I also run into people all the time who 'think' they have a desease if they have a little diahrrea *gruml*.   My symptoms have escalated over years and since I've learned about the Gluten and taken it out of my diet, I really feel much better (other than the episode yesterday). so I spent nearly $100 on gluten free bake goods today (money I really don't have) but I am a bread junkie and paying 7+ dollars for a mini loaf of bread at Walmart is just out of the question in the long run. I love to bake and have a breadmaker (no worries, it's squeekie gluten-clean lol). We'll see how it goes from here and I'm glad to have a new place to vent and get information. Thanks again....hugs, Dani

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    2. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    3. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    5. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.