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

Recommended Posts

Emilushka Contributor

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

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
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

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

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

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.

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,419
    • Most Online (within 30 mins)
      7,748

    kristitullos219
    Newest Member
    kristitullos219
    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

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.