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

I Could Use Some Help

Miss-Fish

By Miss-Fish
in Coping with Celiac Disease

Recommended Posts

Miss-Fish Newbie
Miss-Fish
Posted

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.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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 Newbie
Miss-Fish
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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 Newbie
Miss-Fish
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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 Newbie
Miss-Fish
Posted
  • Author

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. :)

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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

    • 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.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.