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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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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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