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

Very Frustrated

Coolclimates

Recommended Posts

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'm also wondering if there is a reason I'm having a lot of back (particularly lower) pain? I'm wondering if it is a symptom of Celiac or just something entirely not related?

This may be reaching, but have you had your kidney function tested? It is possible to have a kidney infection or low functioning kidney's without havign any major symptoms besides lower back pain and fatigue.

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

My lower back pain seems to be gluten related. That doesn't mean that yours is though.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

On another subject, is it possible that I could be getting glutened from my dish soap? I use Meijer's brand (green apple scent) and am unsure as to whether it has gluten in it or not. Or should I worry about this at all?

domesticactivist Collaborator
domesticactivist
Posted

Anecdotally, my partner's chronic lower back pain went away gluten-free/on GAPS. She's not celiac as far as we know. (not tested)

dilettantesteph Collaborator
dilettantesteph
Posted

Gluten in dish soap is a possibility.

  • 2 weeks later...
viviendoparajesus Apprentice
viviendoparajesus
Posted

i can relate to your frustration. i have also been gluten-free for a year and i still have a lot of symptoms. other than milk sometimes not seeming to agree with me and not liking the taste - i was clueless that i was casein (milk protein) intolerant. i ate a lot of cheese and yogurt and some ice cream and never knew. i have heard that casein and gluten intolerance often occur together. you could also have cross reactivity (cyrex labs has a test). i cannot have yeast or buckwheat. i would be careful with gluten-free products if they contain some gluten or cross contamination especially since the gluten can add up if you are eating a lot of gluten-free products. i do not having clear symptoms when i have gluten or foods i am intolerant or allergic too. it does make some challenges. best wishes!

RollingAlong Explorer
RollingAlong
Posted

Stop all the supplements for at least 2 weeks and then add them back in one at a time, very slowly. My spouse felt so much better after doing this.

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

Celiac.com Sponsor (A8-M):


Coolclimates Collaborator
Coolclimates
Posted
  • Author

I'm not taking any supplements (besides Citrical Calcium Citrate which is definitely gluten free, I checked). I've had blood tests to check for allergies several times. Twice everything came out negative. The other time was through a alternative medicine clinic and it showed all kinds of allergies. But, and this is a big but, this clinic has a very bad reputation around here (unfortunately I didn't find that out until I went there and lost lots of money due to bogus tests) and the lab that processes the results has an "F" rating by many medical experts. I will be getting skin prick tests in a few weeks and hope that that will confirm that I am, indeed, not allergic to anything else.

BTW, since writing this, I believe that I've improved a bit. I have gained a little weight and am feeling less exhausted all the time. I've been extremely careful about this gluten-free diet and rarely going out to eat. I will most likely be checked again in Sept but I'm hoping that I'm on the right track here.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

PS. I found out recently that I had a herniated disk, hence all the horrible lower back pain and sciatica. I had to take nearly 2 weeks off of work and stay in bed for long periods of time. I finally got an epidural yesterday and I think that I'm FINALLY beginning to feel better after over a month of pain.

love2travel Mentor
love2travel
Posted

PS. I found out recently that I had a herniated disk, hence all the horrible lower back pain and sciatica. I had to take nearly 2 weeks off of work and stay in bed for long periods of time. I finally got an epidural yesterday and I think that I'm FINALLY beginning to feel better after over a month of pain.

So glad you are finally starting to feel better. Herniated discs SUCK! Three of mine are herniated and so have been unable to work for 3 1/2 years, much of that time in bed, causing muscle wasting and so on. I still must lie down at least half the day, have had tons of painful cortisone injections, physical therapy, acupuncture, massage, chiro, laser... Thank goodness I love to read! :lol: There is still no way I could go back to a regular job - anything less than a few hours would be all I could handle (can only sit 15 minutes at a time which makes it tricky to eat out and drive). But I think it's my fibromyalgia that is making things worse - things just are not healing. I also have several anular tears in my discs plus degenerative disc disease. Having said all that, if only the first doctor who saw me would not have told me to do nothing and go on bed rest for six months - the worst advice he could have given. :angry:

In spite of living in constant pain I still would not trade my life for another. And I am thankful for my numerous blessings. :)

So, keep active as much as you possibly can. Push yourself even. I really wish I had at the beginning and prevented much of this horror. (But I have still learned a lot as a result so am pleased about that.)

dilettantesteph Collaborator
dilettantesteph
Posted

I'm not taking any supplements (besides Citrical Calcium Citrate which is definitely gluten free, I checked).

Unfortunately just because they are definitely gluten free will not mean that they are definitely gluten free enough for a super sensitive celiac. I had problems with gluten free supplements. I really should not have improved when I stopped taking them, but I did.

Any supplements I take now, I carefully checked with elimination/challenge diet studies. As suggested by RollingAlong.

Coolclimates Collaborator
Coolclimates
Posted
  • Author

I am so sorry to hear of your health problems, love2travel. Mine are trivial compared to yours. Yes, I don't have a lot of faith in doctors these days. I try to get 2nd opinions. I can't imagine the amount of pain you must go through...I literally felt handicapped when I had this slipped disk. Best of luck to you and hope that you feel better very soon :)

love2travel Mentor
love2travel
Posted

I am so sorry to hear of your health problems, love2travel. Mine are trivial compared to yours. Yes, I don't have a lot of faith in doctors these days. I try to get 2nd opinions. I can't imagine the amount of pain you must go through...I literally felt handicapped when I had this slipped disk. Best of luck to you and hope that you feel better very soon :)

Oh, Coolclimates. After I typed that blurb I felt bad because I did not want to start a pity fest for myself! I am moving on and above that now.

Are you beginning to heal and feel better? That kind of pain is probably one of the worst a person can have, especially initially when in the acute stage. So, I feel for you. Take care of you! :)

  • 3 weeks later...
Coolclimates Collaborator
Coolclimates
Posted
  • Author

yes, my back pain is much better. It hasn't completely gone but it is a helluva lot better than it was. I will be seeing a physical therapist in a couple of weeks. Right now I'm afraid to do much exercise as I fear that it could make my back worse. I love to swim and do yoga, but with yoga I have to really lay off until I can talk to a therapist. Thanks for asking. I've had an increase in restless legs and insomnia but it is most likely due to a medication I started taking lately. I might just have to stop taking it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,748
    • Most Online (within 30 mins)
      7,748
    NYC Sidewalk Repair
    Newest Member
    NYC Sidewalk Repair
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • olivia11
      suggest gluten free food

      By olivia11 · Posted

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      GI DX celiac despite neg serology and no biopsy

      By knitty kitty · Posted

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Neg for HLA dq8 and dq2
×
×
  • 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.