New, Massive Pain When Glutened

[Munzie]

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

[kareng]

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]

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]

  On 7/24/2013 at 1:07 PM, Wulfin said:

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

 

  On 7/24/2013 at 1:07 PM, Wulfin said:

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]

  On 7/24/2013 at 2:53 PM, niese said:

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