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

Getting A Little Scared Now...

JerryK

Recommended Posts

JerryK Community Regular
JerryK
Posted

So on Thursday and Friday, I felt so well that I smugly thought no way can I be Celiac, I feel too

well.

On Saturday I was a terrible Gluteneater. The wife and I stopped at Krispy Kream and bought doughnuts. Then we had pizza with the kids for dinner( I ate two pieces). Then later I ate some Chinese food...You know...deep fried Shrimp....Cashew Chicken, Orange Chicken..all covered with...flour of course...

Sunday I was sick as a dog...cramps.....bloating...nausea....Diareaha. I even got sick during my morning run, which never happens. It's Monday morning and I'm feeling a little better, but my back still hurts.

Is it the Gluten?

I don't know what to do. We're going on an Alaska cruise in two weeks. I'm so freaked out now, I'm going to be afraid to eat anything except meat and potatos. But then if I do that and I really am Celiac, when I go to get tested, it'll come out negative....

Any advice...what should I do? Should I just pack the immodium and go on about my business or do I eat carefully.....This is so frustrating.

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

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted

I'm sorry you're feeling so bad :(

If you're going to persue testing, pack the immodium and do the best you can. Eat all of the gluten you can stand. I'm mid-challenge right now and I'm to the point of being afraid to drive. It's a lot easier to put up with it for a few more weeks than to be gluten-free for months and have to go back on gluten for another 3 months.

I find that red bull perks me back up the fastest without burning me out. Some phayzyme might be a good idea for you at this time, as well.

Good luck!

KaitiUSA Enthusiast
KaitiUSA
Posted

Sorry you are feeling bad. Yes, it is likely the gluten causing that and you should not go gluten free before testing unless the testing means nothing to you. If you know that your body reacts this way doesn't it make sense to eliminate it so you feel better? I mean I know it's a pain in the butt and may be hard if you do not know for sure but think about it...something is obviously in that food causing your body alot of problems.

If you know the only way you can stay gluten free is with a positive test result then I suggest taking some pepto or something along on the trip.

ravenwoodglass Mentor
ravenwoodglass
Posted
So on Thursday and Friday, I felt so well that I smugly thought no way can I be Celiac, I feel too

well.

On Saturday I was a terrible Gluteneater. The wife and I stopped at Krispy Kream and bought doughnuts. Then we had pizza with the kids for dinner( I ate two pieces). Then later I ate some Chinese food...You know...deep fried Shrimp....Cashew Chicken, Orange Chicken..all covered with...flour of course...

Sunday I was sick as a dog...cramps.....bloating...nausea....Diareaha. I even got sick during my morning run, which never happens. It's Monday morning and I'm feeling a little better, but my back still hurts.

Is it the Gluten?

I don't know what to do. We're going on an Alaska cruise in two weeks. I'm so freaked out now, I'm going to be afraid to eat anything except meat and potatos. But then if I do that and I really am Celiac, when I go to get tested, it'll come out negative....

Any advice...what should I do? Should I just pack the immodium and go on about my business or do I eat carefully.....This is so frustrating.

I think you already have your answer to the gluten question, your body told you. As to the trip I would go but I would eat as gluten free as I could so I would have a good trip. Even if that meant steak and baked potato every night, only wine to drink and salads and fruit. I would also pack immodium even though I am not a fan of keeping toxins in our systems. The D is your body trying to get the poison out. You do know also that there are some of us that come up negative in testing even with full blown celiac. I tested negative for years but that certainly didn't mean that wasn't the problem. My recovery from a living death after going gluten-free has been miraculous.

mouse Enthusiast
mouse
Posted

I am sorry that you are feeling sick. But, there is nothing to fear from the diagnosis of Celiac, unless you continue eating gluten and then cause a lot more damage to the body. Some people need the diagnosis or after awhile of being gluten-free, they think it was all in their minds and then they go back on gluten. In that case a diagnosis is necessary. This is your call and only you can decide. If you decide to pursue the testing then you have to continue to eat gluten. I hope your trip goes well no matter your decision.

CarlaB Enthusiast
CarlaB
Posted

Sounds like the typical gluten-challenge for someone who has a gluten intolerance to me! I also had that problem, but more c than d during the challenge. By the end, I was like Chelsea and didn't feel safe driving. Now I joke that I don't need alcohol, I can get drunk of a dinner roll and have a hangover for five days! (I'm actually a very lite drinker, so it's funny to my friends).

It's up to you whether you need the testing. I felt like I needed it, so kept up the challenge. Unfortunately for me, my results were negative. Or, should I say, not positive since negative cannot rule out celiac. I ended up going to Enterolab.

JerryK Community Regular
JerryK
Posted
  • Author

Thanks for your responses. I couldn't even work yesterday. Today I feel much better. I had meat and potatos yesterday....

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

Jerry, why don't you get tested before the cruise? It seems to me that you likely won't have a good time on vacation if you're sick all the time. Better to know early than continue causing serious damage to your body.

JerryK Community Regular
JerryK
Posted
  • Author
Jerry, why don't you get tested before the cruise? It seems to me that you likely won't have a good time on vacation if you're sick all the time. Better to know early than continue causing serious damage to your body.

Now that I feel better today and can think more clearly, that is what I should do. Provided my

doctor agrees...

penguin Community Regular
penguin
Posted
Now that I feel better today and can think more clearly, that is what I should do. Provided my

doctor agrees...

Beware that if you haven't been eating at least the equivalent of 4 slices of bread a day for the last 3 months, it may skew your tests. Just a thought.

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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    4. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748
    denise.milillo
    Newest Member
    denise.milillo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.