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Very Frustrated


Coolclimates

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GlutenFreeManna Rising Star

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.


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dilettantesteph Collaborator

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

Coolclimates Collaborator

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

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

Gluten in dish soap is a possibility.

  • 2 weeks later...
viviendoparajesus Apprentice

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

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.


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Coolclimates Collaborator

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

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

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

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

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

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

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.

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      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
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