I Could Use Some Help

[Miss-Fish]

Good afternoon, my name is Rachel, I would like to start off by saying that I have not been diagnosed as a celiac; I just believe that I am due to my experiences. This is a short rundown of what has been happening to me..

 

All my life I have had a "bad" stomach; often getting bloated and major stomach cramps, some of these were so bad I would have to stop moving, and hold my breath until it passed, to keep the pain from getting so bad that I thought I would pass out. This just became "normal" for me, and my mother had the same problem so I figured we had bad genetics when it came to our guts. 

 

Fast forward to 2013, I start to experience a very distinct pattern of sickness.

• First I get a bad headache....and I mean VERY bad.....so bad that I just cry.
• Second is bloating, accompanied by my stomach literally shutting off. I mean SILENCE! I know it's off because one of the signs that I am coming out of an episode is that my stomach starts to make sounds again, and starts to process the gasses that are making me bloat.
• 3rd is nausea and dizziness with stomach upset, I often try to throw up just to get past the stomach pain; It feels like my stomach is a hard rock.
• 4th is a panic attack....this is the worst symptom, the combined situation is so bad that I am at risk for suicide when I have an episode. It's so bad that the thought of having to endure this again makes me want to just give up.....
• the only way I get though this is to take a vicodin, and sleep. by the time I wake up the worst has passed and I am left exhausted and weak...my body is sore...like I ran a marathon the day before. My head is cloudy and funky and it's very hard to keep my focus.

The worst episode sent me into the ER....I thought I was having a heart attack. The only thing I had eaten that day was noodles and meat and veggies. So I decided to stop eating gluten; this was life changing by itself. I was finally feeling normal again; the final test was when I accidently ate gluten and I had an immediate reaction to it. 

 

So fast forward to 2015, I have stopped eating gluten and I stick to meat, veggies and fruits.

 

Yesterday I ate boar's head maple honey turkey, and I had another episode, just like when I eat gluten....but there is no gluten in it? 

 

I am afraid to eat now....does anyone have any idea what could be going on with me?

 

 

As for being tested I refuse.....I have heard that to be tested for celiac disease you have to ingest gluten...I would rather live without a diagnoses, than put myself through another episode...

 

This sickness has cost me jobs in the past, and now it's causing me to miss class. My professor doesn't believe me when I tell her that I have been sick and she is knocking my grade down for missed classes. 

 

I have to get a hold on this sickness before it ruins my life even more....or I just decide that it's not worth it anymore to keep trying.

[cyclinglady]

Okay, then you really have to make sure you are gluten free.

Here is a link to our Newbie 101 thread under our coping section:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

You really have to watch out for cross contamination, lipsticks and hand lotions....anything that is possibly going to get swallowed.

It is a shame that you are not diagnosed. But I understand. My hubby went gluten free per the poor advice from my allergist and his GP. It worked and he has been well for over 13 years. Then I was formally diagnosed almost two years ago. Hubby will be the first to say that I have received more support medically and from family and friends. It also makes it easier to have my kid tested periodically since I am diagnosed. We want to prevent her from experiencing the long term damage that I have suffered

You might not have a gluten issue. Many folks have allergies and intolerances to foods (e.g. Corn or lactose intolerance, sulfite intolerance, histamine intolerance) -- the list is endless. You might even have gallbladder issues or a thyroid disorder. Who knows?

We are not doctors and obviously can not make a diagnosis over the Internet.

That Boar's head is usually gluten free. Was that from the deli cut on their slicer or in a package?

I wish you well.

[Miss-Fish]

Okay, then you really have to make sure you are gluten free.

Here is a link to our Newbie 101 thread under our coping section:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

You really have to watch out for cross contamination, lipsticks and hand lotions....anything that is possibly going to get swallowed.

It is a shame that you are not diagnosed. But I understand. My hubby went gluten free per the poor advice from my allergist and his GP. It worked and he has been well for over 13 years. Then I was formally diagnosed almost two years ago. Hubby will be the first to say that I have received more support medically and from family and friends. It also makes it easier to have my kid tested periodically since I am diagnosed. We want to prevent her from experiencing the long term damage that I have suffered

You might not have a gluten issue. Many folks have allergies and intolerances to foods (e.g. Corn or lactose intolerance, sulfite intolerance, histamine intolerance) -- the list is endless. You might even have gallbladder issues or a thyroid disorder. Who knows?

We are not doctors and obviously can not make a diagnosis over the Internet.

That Boar's head is usually gluten free. Was that from the deli cut on their slicer or in a package?

I wish you well.

Thank you for the reply.

I am just scared to be diagnosed because I don't want to have an episode. I do acknowledge that it could be something different though.

I have read the newbie section, however after thinking about it I did have them cut it on their slicer..... I thought it was the nitrates in it that made me sick, but now I am thinking cross contamination. Normally I am very careful, I don't go out to eat and I only eat meats, veggies and fruits and nuts. No grains at all, and I try to stay away from anything overly processed.  

 

I only bought the deli meat because I was starving, and didn't have time to cook something. Lesson learned...I should have just bought a bag of organic carrots. 

[cyclinglady]

I buy deli meat when we travel (love turkey wrapped around string cheese). I typically buy those packaged from the factory and marked gluten free.

Your deli could have been crossed contaminated in the slicer or the worker who just made a sandwich and did not change gloves. You might be having an issue with nitrates or seasonings. I can not eat hot dogs because they usually contain garlic. It is not a gluten reaction, just an intolerance.

The good news is that my allergies and intolerances have diminished or are gone. I attribute it to healing. I hope yours go away too. There is always hope!

[Miss-Fish]

I buy deli meat when we travel (love turkey wrapped around string cheese). I typically buy those packaged from the factory and marked gluten free.

Your deli could have been crossed contaminated in the slicer or the worker who just made a sandwich and did not change gloves. You might be having an issue with nitrates or seasonings. I can not eat hot dogs because they usually contain garlic. It is not a gluten reaction, just an intolerance.

The good news is that my allergies and intolerances have diminished or are gone. I attribute it to healing. I hope yours go away too. There is always hope!

I have bought roast beef from the same place without incident on a few occasions so I thought I would be safe, but ti only takes one time to make me never do it again. For the most part I am 95% better on a gluten free diet. Not to mentian I used to have a HUGE rage issue..since I have stopped eating gluten I have been able to handle my emotions for the first time in my life. I went from a violent and rageful person to a normal person in about 6 months. That has probably been the greatest gift in my life, because I hated myself after I "raged out". The only times I get rageful are the few following days after being exposed to gluten. Did you have any issues with heightened emotions? 

[cyclinglady]

You bet! That is how my non-celiac daughter can tell if her mom and dad have been glutened. "Did you guys get glutened? You are acting like it." Sure enough one of us will say, "Oh, I ate out today!" We definitely get grumpy!

[Miss-Fish]

You bet! That is how my non-celiac daughter can tell if her mom and dad have been glutened. "Did you guys get glutened? You are acting like it." Sure enough one of us will say, "Oh, I ate out today!" We definitely get grumpy!

Yep, I have had to learn to watch myself on those occasions, I just keep my mouth shut.  lol 

 

Again thank you for taking the time to talk to me today, sometimes it helps just to have someone who understands.