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

Odd Reaction....

JerryK

Recommended Posts

JerryK Community Regular
JerryK
Posted

So I sort of had an atypical reaction last night, or so I think. I'm waiting for a doctors appointment in a couple weeks. I know I need to eat as much gluten as I can, but I'm having trouble eating it all the time. But I know I need to eat some to keep the old immune response going...so I have a sandwich for dinner last night. I sort of know what to expect....I sort of start feeling comatose, drugged, lethargic, depressed....within 2-4 hours... Then I'll have a bout of intestinal problems, likely the next day. It follows a pattern that I've become familiar with. Almost exactly like you feel when you are coming down with a virus...it is the immune response I'm feeling...I'd bet money on it.

But last night...after about two hours...I started feeling really tense, anxious and shakey...very pronounced. It was like I was having an anxious reaction...rather than a depressed/lethargic one.

However, this morning...I'm back to feeling like I usually do after eating gluten...tired, shakey, I ache all over...my mood is a 5-6 compared to yesterdays 8-9.

So having said all that, does anyone else experience these odd peculiar reactions. I don't know if it

was simple anxiety, which I've really had a handle on lately, or if it was an actual REAL reaction, if you know what I mean...J

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

Oh yeah, Me thinks you be a normal celiac, if there is such a thing!!!!!

rmmadden Contributor
rmmadden
Posted

Jerry,

Welcome to the wonderful world of Celiac!

Your description sounds very familiar especially during my first year post diagnosis. I had several bouts with anxiety and feeling shakey. It was only thru this forum that I didn't go crazy. People like Deb (and countless others) were there to share their similar stories and help me feel as if I wasn't alone in this disease.

Got a question? Ask away. Need to vent? Do it. I guarantee that there is somebody on the forum who has dealt with the same problems.

Best of luck!

Cleveland Bob ;)

JerryK Community Regular
JerryK
Posted
  • Author
Jerry,

Got a question? Ask away. Need to vent? Do it. I guarantee that there is somebody on the forum who has dealt with the same problems.

Best of luck!

Cleveland Bob ;)

Well Yeah, I'll vent for a sec..thanks! I'm a short 5-6 blond haired guy, obviously of European decent.

I have a history of depression and anxiety...I had to have all my teeth crowned at age 40 because of severe enamel loss and attrition. Why the HE%% did the medical community feed me antidepressants for 5 years without even suggesting this could be a food related issue? Why the HE%% didn't any doctor even think about it. I now KNOW that I'm gluten intolerant, whether or not I'm truly Celiac is

anyone's guess, but why the HE%% did I HAVE TO figure it out?? Rhetorical questions ;)

Whew thanks, doesn't make the aches and pains go away...but was somewhat satisfying anyway.

JerryK Community Regular
JerryK
Posted
  • Author

Perhaps part of the reason men don't get diagnosed so often is we're not good at complaining.

I mean seriously what man actually wants to go to the doctor, especially to discuss poo issues?

And then there's the problem that we look too healthy...all muscular and manly...how can we possibly be physically sick...it must be mental. :wub: I love doctors...

nikki-uk Enthusiast
nikki-uk
Posted
Perhaps part of the reason men don't get diagnosed so often is we're not good at complaining.

I mean seriously what man actually wants to go to the doctor, especially to discuss poo issues?

And then there's the problem that we look too healthy...all muscular and manly...how can we possibly be physically sick...it must be mental. :wub: I love doctors...

I think you're on to something there Jerry!!

My hubby absolutely had difficulty even admitting he was ill - and as you say who wants to discuss poo?? :lol::lol:

Gentleheart Enthusiast
Gentleheart
Posted
Well Yeah, I'll vent for a sec..thanks! I'm a short 5-6 blond haired guy, obviously of European decent.

I have a history of depression and anxiety...I had to have all my teeth crowned at age 40 because of severe enamel loss and attrition. Why the HE%% did the medical community feed me antidepressants for 5 years without even suggesting this could be a food related issue? Why the HE%% didn't any doctor even think about it. I now KNOW that I'm gluten intolerant, whether or not I'm truly Celiac is

anyone's guess, but why the HE%% did I HAVE TO figure it out?? Rhetorical questions ;)

Whew thanks, doesn't make the aches and pains go away...but was somewhat satisfying anyway.

Newly diagnosed "old" person here. I've had your uncomfortable anxiety symptoms 24/7 for years. And it's not been fun. No doctor ever got it right, even some pretty smart ones. They just stared at me blankly and kept prescribing antidepressants, which I chose not to take. Hang in there. It's gonna be OK.

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

Celiac.com Sponsor (A8-M):


JerryK Community Regular
JerryK
Posted
  • Author
Newly diagnosed "old" person here. I've had your uncomfortable anxiety symptoms 24/7 for years. And it's not been fun. No doctor ever got it right, even some pretty smart ones. They just stared at me blankly and kept prescribing antidepressants, which I chose not to take. Hang in there. It's gonna be OK.

And RIGHT on schedule 18 hours after my Sandwich...here come the runs...actually a little earlier than usual. It's so predictable it's uncanny. Always after eating something with wheat...could it be much else??

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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.