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

  • 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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.