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Anyone Else Have Pain Fron The Knees Down?

ruca55

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ruca55 Apprentice
ruca55
Posted

I've got an "ache" in my knees, shins, ankles and feet that seems to be getting progressively worse. In the winter, I recall waking up in the morning thinking oh no I must be getting the flu. It's only 11:00am and I feel like I've been standing all day. We just did Disney in December, there's no way I could walk that much right now. How could there be such a difference so soon?

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eatmeat4good Enthusiast
eatmeat4good
Posted

Are you gluten free?

The first year or two I was ill I had that fatigue and leg pain. Just exactly as you describe. It went away eventually when I stopped gluten and salicylic acid. I was taking Ibuprofen to control the leg pain, and aches, and in the end learned that salicylic acid and Celiac were messing with my metabolism so much that it was causing that pain. Do you take anything for it? If so...read about salicylic acid...1 in 100 are intolerant. If you do not take anything then it could be gluten. I have that pain again if I get any gluten. Hope it goes away soon for you.

ruca55 Apprentice
ruca55
Posted
  • Author

No, I'm not gluten free right now. My endoscopy is Monday.

eatmeat4good Enthusiast
eatmeat4good
Posted

Oh wow...I hope you try gluten free even if the testing turns out negative. It really could cause the problems you describe.

ruca55 Apprentice
ruca55
Posted
  • Author

Yes, regardless of the test results I will be going gluten free. A couple of weeks ago I had to have my gallbladder removed, as I started to get an appetite back after surgery I was able link symptoms (horrible sinus like headaches that also went up the back of my neck) to what I was eating. I spent 3 years "chasing my tail" trying to discover the cause of the headaches. The only reason I choose the biopsy is 1) I have some concerns about my daughter and 2)I have to go in for a colonoscopy anyway so they are doing it at the same time.

sa1937 Community Regular
sa1937
Posted

You can go gluten-free as soon as your endoscopy/biopsy has been done. You don't have to wait for the results, which will probably take a week or so. Hopefully you feel better soon!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
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      By captaincrab55 · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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