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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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    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

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    • heart390
      Why now?

      By heart390 · Posted

      THANK YOU Trents!!!  No, I have not been tested - but have several autoimmune diseases ( MS over 50 yrs.) MAJOR GAS  & fatigue are my most severe problems.  Possibility STRESS helped kick it off?  It's a sad additional problem to add to the latter part of my life!
    • Scott Adams
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    • trents
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      Welcome to the celiac.com community @heart390! Genes connected with the development of celiac disease remain latent until triggered or activated by some biological stressor. The stressor can be many things and our knowledge in this area is incomplete. Suspects include viral infections, antibiotics, pesticides, preservatives and other harmful chemicals in the environment. The onset of celiac disease can happen at any stage in life. It is a long outdated misconception that gluten intolerance is a childhood phenomenon that you eventually outgrow. You use the term "gluten problems". What do you mean by that? Have you been formally diagnosed with celiac disease (aka, "gluten intolerance")? There is also NCGS (Non Celiac Gluten Sensitivity or "gluten sensitivity") for which there is not yet any testing available. It shares many of the same symptoms with celiac disease but is not autoimmune in nature and does not damage the lining of the small bowel. A diagnosis of NCGS depends on first ruling out celiac disease for which we do have tests. If you would seek testing for celiac disease, you must not begin the gluten free diet until all testing is done with or you will have invalidated the testing. There are two stages to the testing. The first stage involves a simple blood draw to check for certain antibodies produced by celiac disease. If the antibody testing is positive, doctors normally order an endoscopy with biopsy of the small bowel lining which checks for damaged caused by the inflammation associated with the autoimmune response. That is the second stage of diagnostic testing.
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