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

So Frustrated ...

Emilushka

By Emilushka
in Coping with Celiac Disease

Recommended Posts

Emilushka Contributor
Emilushka
Posted

I think I have to give up cheese. I'm not sure, but every time I eat a bunch of it I feel ill. If I eat smaller amounts, I feel a little icky but not terrible. Kefir is OK. I think this all adds up to having trouble with casein.

But now all of a sudden, out of the blue, my back is killing me! Muscle aches as if I'd done something specifically bad, but I was just sitting in my chair! I did nothing to my back!

I am so sick of feeling sick. Right now I'm just frustrated. These back aches are a totally new problem that I'm not used to and cannot explain. Frustration.

Plus, I really love cheese. Seriously. Love. Cheese. :-(

Please tell me this gets better ... I was feeling better before and now I feel like crap again. It just keeps feeling icky.

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

Celiac.com Sponsor (A8-M):


rdunbar Explorer
rdunbar
Posted

Hi, I understand your frustration,

I got super stubborn about dairy, not so much cheese, but cream for my tea and occasionally I would break down and have ice cream when I got really depressed, even knowing that I would feel horrible, and my that dermatitas herpetiformis would flare up; I was essentially consciously inflicting pain on myself . What was wrong with me?

I have to say the healing process didn't begin for me until I quit dairy entirely, of course, I did this at the same time I got strict about risking CC, and also other foods like nightshades and legumes, so it's hard to tell how significant no dairy has been, but it's been a huge difference on the whole. I literally knew it was bad for me when I'd binge on ice cream, but lied to myself that ' I can get away with a little in my tea' , apparantly not.

I had major withdrawl for a few weeks where I could barely get out of bed after I finally phased it out, I was just totally run down for a while and fatigued.

It was worth it because I'm doing much better now ; I think casien just registers as the same thing as gluten, so your immune system is going to get triggered all the same to launch an antibody attack. Also, when your gut lining is damaged, it's unable to fully protect your bloodstream from picking it up directly, as in leaky gut syndrome .Supposedly, after you heal up enough you can add in the harder cheeses like Parmesan ( which is one of the best IMO ), and goat cheese. But it takes some time

The longer I'm getting used to living a gluten free, I'm just viewing food and eating in a different way, just realizing that it's not for entertainment, you know, the animals don't have to have thaifood one day, Italian the next, they just eat. Why not us? I guess I'm just slowly accepting that I have to do without a lot of things that, while enjoyable, are really unessesary as well as very harmful. So, it can and will get better with the frustration, it just comes with the territory, and it's perfectfully natural to respond this way,

tarnalberry Community Regular
tarnalberry
Posted
But now all of a sudden, out of the blue, my back is killing me! Muscle aches as if I'd done something specifically bad, but I was just sitting in my chair! I did nothing to my back!

Actually, "just" sitting in a chair (for long periods of time, in particular) is one of the biggest contributor to back pain (muscle pain as well as joint pain). It's doing *nothing* (as often happens in a chair) that can make back pain a problem.

That said, it still sounds like dairy is bothering you. (Kefir, however, has plenty of casein - it's the lactose that is consumed by the bacteria in kefir.)

curiousgirl Contributor
curiousgirl
Posted

My 2nd day dairy free. I fought it too...so hard not having it in my coffee. Using coconut milk now...just not the same! BUT, I'm really tired and groggy today and yesterday and was wondering if I'm going through withdrawal?? Hmmmm....hate when that happens!

Take a nice hot epsom salts bath and drink lotsa water for aches.

Emilushka Contributor
Emilushka
Posted
  • Author

I think casien just registers as the same thing as gluten, so your immune system is going to get triggered all the same to launch an antibody attack. Also, when your gut lining is damaged, it's unable to fully protect your bloodstream from picking it up directly, as in leaky gut syndrome .Supposedly, after you heal up enough you can add in the harder cheeses like Parmesan ( which is one of the best IMO ), and goat cheese. But it takes some time ... So, it can and will get better with the frustration, it just comes with the territory, and it's perfectfully natural to respond this way,

Yeah ... I am totally afraid that my body sees casein as gluten-ish and therefore to be attacked. I am still sad about giving up gluten. I don't want to give up my beloved dairy too.

Time is not my strong suit. I am an impatient person. Ugh.

I guess I'm going through all those stages of change. I think I'm still at the pitching-a-hissy-fit stage right now.

Actually, "just" sitting in a chair (for long periods of time, in particular) is one of the biggest contributor to back pain (muscle pain as well as joint pain). It's doing *nothing* (as often happens in a chair) that can make back pain a problem.

That said, it still sounds like dairy is bothering you. (Kefir, however, has plenty of casein - it's the lactose that is consumed by the bacteria in kefir.)

I actually was standing all morning at the coroner's, so I was surprised because I was finally sitting (which usually feels like a welcome change after standing for a long period of time).

I didn't know about the casein in kefir. That ... really sucks. A lot. Ugh. I go to see the specialist on Tuesday. I'll see what he says about cheese vs probiotics because I love the cultures in kefir. Maybe I can tolerate small amounts? I can hope, right?

My 2nd day dairy free. I fought it too...so hard not having it in my coffee. Using coconut milk now...just not the same! BUT, I'm really tired and groggy today and yesterday and was wondering if I'm going through withdrawal?? Hmmmm....hate when that happens!

Take a nice hot epsom salts bath and drink lotsa water for aches.

I am still kicking and screaming about the dairy thing. I love cheese. I don't want to go dairy-free ... but I may be joining you if my doc tells me I have to. Ugh. Still kicking and screaming over here.

sb2178 Enthusiast
sb2178
Posted

i've finally given up dairy and PB (sigh). and, unfortunately, i am feeling better. The random occasional pain is pretty much gone.

I have been eating some goat cheese, not a whole lot, but will probably stop that too.

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. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      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...
    2. 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...
    3. 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...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      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...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,079
    • Most Online (within 30 mins)
      7,748
    Terra33
    Newest Member
    Terra33
    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

    • 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.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.