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Very Frustrated
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39 posts in this topic

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

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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?

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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)

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Gluten in dish soap is a possibility.

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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!

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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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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.

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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.

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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.)

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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.

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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 :)

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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! :)

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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 Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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