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Celiac Disease and Increased Pain Levels

Lorivzcs9dLLorivzcs9d Posts: 9
edited 06/11/2012 - 9:00 AM in Neck Pain: Cervical
I was injured in 2005. I had left rotator cuff surgery in 2005 and a fusion at C5-6 in 2006. I am now disabled but hopeful.

I would like to share with everyone that I found out what has been causing my "I want to die moments' as I call them. Celiac Disease.

For years, my husband and I could not figure out why on some days my pain level went through the roof, and on other days it stayed at a lower level. Some days I literally did nothing - and I would be up all night in pain, putting ice on my neck, suffering with a severe headache, very nauseated, many times vomiting. Other days when I thought I did a lot - no increase in pain, no vomiting.

I also spent most of the days in bed, asleep. I just didn't have any energy and was always in a mind fog. I blamed the pain med's for this.

I was diagnosed on March 15th 2011 with celiac disease.

Since my birthday was on 3/17, I decided that would be my last gluten day. I ate everything that had gluten in it. I wished I had been warned against this, but I finally found out why I was up at night with ice packs on my neck due to pain that no med's touched, a severe headache, and why I was sick to my stomach and vomiting. It wasn't what I had done, it was what I had eaten.

This disease is way under diagnosed and I would like to spread the word, so that others do not suffer for as many years as I did.

My doctor warned me that my blood test might come back negative, they did. But the pictures he showed me and the biopsy said Celiac. He said even if my blood test came back negative his diagnosis is Celiac Disease.

My family and friends can not believe the difference in me already from being on a gluten free diet. I'm still dealing with microscopic colitis, but the mind fog is clearing, and I do not have the "I want to die moments" all the time. I also do not take daily 3 to 4 hour naps, I am losing about 1 pound a week without dieting. Next, I am going to go dairy free because I also have microscopic colitis which is still causing me problems.

I am hoping that once I get the colitis under control, and my body heals more that I see more improvements in my pain and energy. I have accidentally gotten gluten on two occasions, and it is shocking what it does to me. Just a few crumbs of gluten and my pain level goes sky high and I just feel awful, I mean off the charts bad.

For years I blamed the red sauce on foods for my digestive flares. It was the pasta and pizza dough, not the red sauce.

I have already seen such improvements. My fingernails were getting so thin and growing out cracked. Now they are thick and healthy. Who could have known. I thought it was just old age (I'm 53).

I have to wonder if many of my current medical problems are somehow tied to years of having this disease. I was always hungry and ate all day long, but my body was malnourished. I"m still in pain daily and on pain medications. My lower back is now falling apart and it looks like I will be heading back to the operating room. I have developed bursitis in my right hip (from sleeping on it for years since it was the only side without pain). I have suffered from migraines all my life.

I am hopeful that being on a gluten free diet my healing after my back surgery will go better for me this time. Something for everyone to consider who has suffered with IBS for years. It took the doctors 30 years to figure out one of my problems.

Good luck to all of you.


  • Thank you for posting! My daughter has been suffering for years as well and has finally self-diagnosed Celiacs. She is waiting for an appt with a specialist to have it confirmed. She's put herself on a gluten-free diet and lately has been feeling much better, but my understanding is that she will need to eat products with gluten for the testing. She's quite upset about that.

    I get the feeling that doctor's have a lot yet to learn about diagnosing and understanding this. For years, different doc's told her to eat more fibre for her intestinal problems......but it turns out that was actually making her pain worse, not better.

    Glad to hear you're on the road to recovery!
  • .....posted twice.....
  • Sorry to hear about your daughter. I found when I accidently ingested gluten after I stopped, I got far sicker then when I was eating it all the time. If she get's an upper GI soon, I don't know if they will make her start eating gluten again. For the blood test, she will. The upper GI is the gold standard for diagnosing this disease. I guess the only benefit to being officially diagnosed is you can deduct the extra cost for gluten free foods from your taxes, and the mileage for driving to specialty stores and knowing that it is not another problem. Good luck to you both.
  • My cousin from europe who was here visiting suffers from this also,
    There is not a huge selecfions of gluten free foods from what i seen when we went shoping , And what there was is prety expensive,

    I am not sure if most people make everything themself or what when you have to eat everything gluten free?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I have a good friend who slowly developed unmanageable, all-over body pain after being a very healthy, active woman in her 40's. A couple of years ago her pain levels went over the top, and her husband insisted on her seeing another doctor, who just happened to do a blood test. She was also diagnosed with celiac disease, and since she has been gluten-free, her pain levels are down to almost non-existent and she is back doing everything she used to. I know of others who had this illness, but had no idea it could affect people so severely with the pain end of things.

    I hope this diagnosis will make things easier for you with your other health challenges - good luck!

  • Thanks, I'll let her know about the upper GI, but hopefully her doc will suggest it. Yes, just recently found out about the tax deduction also, but first she needs the official diagnosis.

    Thanks for the well wishes!
  • Most processed foods do contain gluten, but company's are getting better. Cooking at home is not an issue, you can eat all non-processed meats, vegy's and fruits, and good dairy items. The stores now have many items that are clearly marked gluten free. Traveling and eating in restaurants is a big deal. Some restaurants now have gluten free menus (Outback, Red Lobster), and on cruise ships they are wonderful at preparing meals for me.

    I'm starting to think that eating the american way has probably caused more medical issues than people realize. I recently watched a video online about a Dr. who has MS. She went on diet eaten by ancient hunter/gatherers and had a remarkable recovery.

    When you research Celiac Disease - they have tied almost 300 medical problems to people who are sensitive.

    Good luck to you and your cousin. FYI - family members have a higher chance of having Celiac Disease - it is inherited.
  • I glad your friend has gotten better. It is amazing how your body will attack itself just because of some foods we eat. It is just hard to eat the way I should because I was brought up on processed foods. One day at a time :). Next no dairy, then maybe sugar.

    Thanks for your well wishes.
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