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Very Frustrated

Coolclimates

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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.

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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.

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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.

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    • RMJ
      The Struggle Has Overtaken Me

      By RMJ · Posted

      Ginger38, that sounds very difficult.  Each dietary restriction makes it harder to figure out what to eat. Before my celiac diagnosis I already watched out for my cholesterol level and migraine triggers, but those are much easier than diabetes restrictions. One “bad” meal isn’t that much of a problem for cholesterol levels, and my migraines only happened if I consistently ate the triggers. After many years I’ve figured out how to bake gluten free but I think many recipes have more starch which wouldn’t work for diabetes. If you go with the elephant eating analogy, I think the first portion to work on would be the diabetes, since the immediate consequences of not being careful (passing out from low blood sugar, or diabetic coma from high blood sugar) are so severe. The next portion would be celiac. The serious consequences aren’t as immediate, but if you have celiac disease, I think of eating gluten like a booster shot - revving up the immune system, but to attack yourself leading to long term damage. It sounds like you are experiencing this damage now. I did a google search on “gluten free food for diabetics” and a number of sites with advice came up.  If your insurance will cover it and you can find one, a registered dietician who knows about both diabetes and celiac disease might help you figure out what to eat safely. Hopefully my post will both scare and encourage you, as requested, with a big dose of compassion because this sounds very difficult and you are clearly suffering.
    • Aretaeus Cappadocia
      The Struggle Has Overtaken Me

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      Reading the original post on this thread made me think of "How To Eat An Elephant". The key point is that a whole, big problem can seem insurmountable but if you break it into bite-sized pieces it is much easier to accomplish. Here is the google description. It's not bad: If you're facing a daunting goal, you can use these steps to "eat your elephant": Identify the Elephant: Clearly define the large project or goal that feels overwhelming. Break it Down: Divide the major task into smaller "bite-sized" pieces. If a piece still feels too big, break it down further. Prioritize: Decide which "bite" to take first based on necessity or impact. Focus on the Now: Instead of worrying about the whole animal, focus only on the single step you are taking right now. Maintain Consistency: Progress comes from taking the "next right step" every day until the task is complete. Celebrate Small Wins If I understood Ginger38's post correctly, you are facing the prospect of a gluten challenge, but you are already eating gluten on an intermittent basis. It also sounds like many of the symptoms you attribute to gluten consumption are in full expression. Step back and take a deep breath. Get a notebook and start a gluten-related diary. Don't try to make it perfect; just record what you can about food intake and what you experience as you go along. Talk to your Dr's office (nurse, Dr, whomever) about the challenge. The most rigorous challenge is for someone who has already gone truly gluten free but now needs a clear diagnosis. Someone who is already eating gluten should not need as much "challenge". Even at that, google describes an example challenge as 1-2 slice of bread or 1/2 cup of pasta a day. If that describes your existing diet you are already there. For the moment, try to focus on getting past the challenge and test. Once you have the results, start planning accordingly.
    • Aretaeus Cappadocia
      Gluten challenge - Need some guidance

      By Aretaeus Cappadocia · Posted

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      Gluten challenge - Need some guidance

      By Xravith · Posted

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    • cristiana
      Low iron/high normal haemoglobin

      By cristiana · Posted

      V. interesting. It might well explain the tiredness, and the increased headaches, then.   I'm trying to get my TTG numbers down a bit by avoiding eating out.  Hopefully then if I've healed more I guess I will be able to absorb more iron.  Will find out at the next blood test in the autumn. Thanks so much for your help.  
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