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Inflammatory Issues/arthritis/tendonitis/bursitis?

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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...


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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.


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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.


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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.


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    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
    • Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think. Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here. Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones. I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.
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