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

No More Grains Either


ShannonA

Recommended Posts

ShannonA Contributor

So I have now been off of gluten for 10 months and 8 months ago I had to get off of corn,soy, dairy.  That said my diet has been pretty much chicken, vegetables, and 2 fruits (apple and banana).  I also became salicylate sensitive which made eating anything else impossible.  As of last week I am not tolerating grains.  My belly started getting distended in October with certain foods but now it's distended with anything I eat.  I still have daily headaches/migraines.  I am on pain meds around the clock, anti inflammatory injections and muscle injections at night due to the horrific pain in my head.  I now notice if I eat grains my muscles and bones hurt to the point I don't want to get out of bed and the fatigue is atrocious.  Also grains have started making my mind feel crazy.  It sounds so weird but it's the truth.  It's hard to explain but  there is a direct relation with my intestine, grains, and my mind.  My pain management doctor does not believe this is the cause of any of my problems.  Although out of the 25 or so symptoms I had before going gluten free have resolved, I still have a few, all neurological.  WHen I go to the ER, Tordol shot is what takes away the pain, it's an anti inflammatory medicine.  My doctor started me on Cymbalta this week and I felt like I was on serious drugs and could not function.  I literally could not drive on the 4th day.  Will this end?  Why does it seem I am not going up hill?  I have only drank water and coffee for 10 months also. My biopsy showed nothing and blood test negative for Celiac disease although he only took 2 samples.  But it wasn't until I got off of gluten that I started to get better, bed ridden for 1 year and near death, really.  So why the grains all of a sudden? I just don't understand.  Thank you for any input!

 

 


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Drop coffee if you haven't so far. It can irritate a healing gut.

ShannonA Contributor

Drop coffee if you haven't so far. It can irritate a healing gut.

Thanks did not know that.  With insomnia the last 6 months, I've been drinking about 3 pots to help me going through the day.

mushroom Proficient

When you start reacting to more and more foods it is often a sign of leaky gut syndrome.  This means that the membrane that lets digested food into the blood stream is not working properly and is letting partially digested food through.  Your autoimmune system reacts to this partially digested food as being "non-self" and creates antibodies toward it, and there is another food you are reacting to.  This is usually not a permanent loss, but healing the gut is key.  I don't know what supplements you are taking, but if you are not already doing so I wold recommend a regime of probiotics, digestive enzymes and L-glutamine (to restore the good flora in your gut, supplement the enzymes your pancreas is producing to improve your digestion, and heal the gut). 

ShannonA Contributor

Drop coffee if you haven't so far. It can irritate a healing gut.

Is tea OK?

ShannonA Contributor

When you start reacting to more and more foods it is often a sign of leaky gut syndrome.  This means that the membrane that lets digested food into the blood stream is not working properly and is letting partially digested food through.  Your autoimmune system reacts to this partially digested food as being "non-self"  and creates antibodies toward it, and there is another food you are reacting to.  This is usually not a permanent loss, but healing the gut is key.  I don't know what supplements you are taking, but if you are not already doing so I wold recommend a regime of probiotics, digestive enzymes and L-glutamine (to restore the good flora in your gut, supplement the enzymes your pancreas is producing to improve your digestion, and heal the gut). 

Yes the Naturopath that I saw did say I had leaky gut back in June.  I just started being able to tolerate probiotics 4 weeks ago.  I have been on Verdezyme for a couple of months and I used to take L-glutamine per Naturopath but I quit a while back because he said it was healed by now.  I'll start it again. Thank You!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.