Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Inflammatory Issues/arthritis/tendonitis/bursitis?
0

4 posts in this topic

Hello everyone. First off--thank you ALL for being (bar none) the BEST RESOURCE FOR CELIAC AWARENESS out there!!

Now, my question is this--who among you has inflammatory issues? I ask for my own self, not my celiac child. I have read several other posts on other threads about these problems, but would like specific stories if you could share them. I am struggling with pain constantly. I have arthritis in my lumbar spine, mild degenerstion in cervical spine, mild wear on my knees, a chronic sprain in my ankle (fell off a curb), pain in shoulder and elbow, painful bursts of numbness in leg/hip/neck/arm that take my breath away, and horrible debilitating pain in hip/leg/knees. I also get dry mouth, dry cracking skin, weird little breakouts around temples and ears, brittle hair, and an itch below my left ring finger that I have been digging at for over twenty years. I was recently tested by ortho. for RA--negative. Had MRI, showed very little. I was told years ago that I have ITBS (iliotibial band syndrome) which does explain some of this, but not all. I also have scintillating scotoma (an eye condition) which seems to coincide with the numbness. Oh yes, and I have two part time jobs that both require me to be in top physical shape--lifting up to 60 or so lbs., being on knees for extended periods, on feet for more than 8 hours at a time, etc.

The reason I am asking here, is because it seems that so many of you have inflammatory issues and nerve/neurological issues also. Please share your expereince with me. If you like, PM me (I know how private these things can be.) I am ready to try gluten free for myself, as I am hoping it will at the very least help avoid cc for my daughter, if not give me some relief.

I have not been tested for celiac yet...

0

Share this post


Link to post
Share on other sites


Ads by Google:

When you said the MRI showed little what was it that showed? It wasn't by any chance what they call UBO's was it? Those are diagnostic of celiac in some other countries but often thought to be nothing here.

Reading your description of your pain is like reading my own prediagnosis. I can't say the same will happen for you but I have been pain and med free now since diagnosis. My arthritis is in pretty much total remission, although of course the joint damage is still there but they don't hurt anymore.

Do be sure if you want the celiac panel done that you keep eating gluten until all the testing you want to have done is done. Then give the diet a good strict try.

0

Share this post


Link to post
Share on other sites

Hi, and thank you so much for responding. I have been trying to get medical help for my pain for almost twenty years and I'm tired--tired of hurting, tired of being offered dangerous meds without knowing what's causing it, and tired of feeling decades older than I am.

You mentioned UBO'S--what is this exactly? It was not mentioned on the MRI report, then again, nothing much was. The only findings were the lumbar and cervical issues I mentioned. My personal experience is that a test is only as good as the professional interpreting it, and I am not at all sure mine was handled well. I went to ortho. complaining of knee, ankle and hip pain and he ordered the MRI on my back to rule out nerve damage and MS. I spent a great deal of time educating myself about MRI images and comparing my own to others I saw. My gut feeling is that it was misread.

I discussed my other symptoms with the ortho and he kind of gave me a funny look when I told him I have nausea, recurring 'D', vertigo, dizziness, visual disturbances, headaches, etc. He referred me to a neurologist, but I haven't decided if I should go.

He offered me something in the morphine family, which I refused. He gave me a scrip for celebrux, which I won't take until I literally can't walk anymore. (Ortho says I'm stubborn.) The only meds. I take are Naproxen for the inflammation--which takes a little 'heat' out on the first dose, reduces inflammation on the second dose, but doesn't relieve all of the pain and leaves me with an overall weird feeling and bad indigestion. Ibuprofen does nothing for it at all, but does help with the monthlies.

I am not sure if I really need to be tested for celiac. I have been debating this question for months now. If it simply helps avoid cc'ing my kid, what's the harm of just making this a completely gluten-free household. Testing can mean having a disease that may actually lessen my ability to get proper health coverage or being told I don't have it, leaving me feeling even more invalidated by the medical community than I already do (issues, issues). Then again, I have good health care at present and it wouldn't cost much to just go to my internist and get the panel done. My husband thinks that it isn't necessary, but that it can help other celiacs in the long run by adding yet one more piece to the puzzle for researchers to study.

All I know is I'm hurting. My mother has to take embril shots for her pain. My little girl is having pain already--which bothers me deeply. I know what life is like through the lens of inflammation and wouldn't wish it on her for anything. I am a surprisingly active 40 year old--surprising in that I can even move with so much pain. I feel like I'm 60, and I'm scared of what I might actually feel like at that age if I already have trouble like this. I wake up from nightmares where I'm begging for help, and even wake up crying sometimes it hurts so bad. It hurts to walk, sit , kneel. Laying down on my left hip takes my breath away the pain is so bad.

Sorry for the long winded history. Pain is a lonely companion.

0

Share this post


Link to post
Share on other sites
Pain is a lonely companion.

It sure is. I am not ashamed to admit that brought tears to my eyes. The pain I dealt with daily and the fears produced in my children by their watching the pain that eventually was too great to hide did a lot of damage to them. To say nothing of what it did to my life. Many of us here live with that companion far too long.

It will help makes things much easier on the household to make it gluten free. I have a feeling you might also get your life back. It is your choice if you want to make your life gluten free and whether and how much testing you choose to have done. With a celiac child you might also find that your doctor gives you a 'diagnosis' based on your dietary response if it is good.

I always hate to say that I hope it is celiac but I do so hope the diet helps you. You may find that you are VERY sensitive to gluten after you stop consuming. Some with neuro effects also react to gluten grain distilled vinegar and alcohols, not all but enough to make it a good idea to avoid them until you get some relief and then add them back in if desired and watch for a reaction.

I hope you are feeling better soon. One thing that you also should do is to take a sublingual B12 supplement and also magnesium and vit D3. Those should also help speed the healing but make sure they are gluten and other allergen free.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,918
    • Total Posts
      919,627
  • Topics

  • Posts

    • Weird things people have said
      I've had people say strange things about celiac to me lately... Like someone said, "Oh I'm just a mild celiac so I don't have to worry about cross-contamination." And then someone else said that they're celiac but things have calmed down now so they can have a bit of gluten here and there. And I told my doctor that back in 2014 I thought I had been gluten free but I actually wasn't because I had been repeatedly glutening myself with an old colander. And he just looked at me like I was insane, like a colander?? Sure... I'm not crazy, right? Even if you have no symptoms you have to avoid cross-contamination because you can be doing damage internally right? You can never have 'just a bit'. And a colander is a big source of cross-contamination right?? I know all this but why do these other people not? Why does my doctor not know? So confusing and spreading misinformation... And then they look at me like *I'M* crazy.
    • fructose malabsorption and gluten intolerant
      Look up FODMAPS.   That might clarify things for you.  There really are a lot of diet recommendations so make sure you bring a list of questions regarding foods to your doctor's  and dietician's appointments.  
    • Recovery?
      Thank you for sharing those web sites. I will look at them. We have been gluten free since December so it's been a while. Once, he had a gluten free beer, the kind that they take the gluten out, and his legs felt very heavy and had a more difficult time walking. I really don't want to experiment.  Although I am very careful about what we eat, I am concerned that some of our medication could contain gluten. Is there any easier way to tell if medication has gluten. I did find a website which listed drugs and known gluten but every drug was on it or was determined to be gluten free
    • fructose malabsorption and gluten intolerant
      I don't have celiac but doctors or amazed I don't so they told me to fallow the gluten-free diet like I have it... any way I was wondering if one can have corn, corn starch if they have fructose malabsorption. I am so confused on what I can and can't have.. i have an appt next week hopefully with a dietitian... also can you have sugar free stuff since it's not sugar.. I'm reading online and I'm getting a bunch of mixed info on both. 
    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,963
    • Most Online
      1,763

    Newest Member
    Tams67
    Joined