Soreness

[sore joints]

Does anyone else have any experience with bone aches and joint pain. I had what I call a flare up in Nov/Dec and for the last two weeks I've been experiencing another. In between I've had the occasional pains - usually in my hands. They started after my first pregnancy and got worse after the second. I'm exhausted b/c I'm not sleeping well b/c I'm uncomfortable and I'm just a little down. I feel like I'm losing my mind. One minute there's no pain, then the next minute I can hardly hold my daughter. What the heck is going on. My blood tests were mildly abnormal for Celiac (been referred to Gastro Doc). I just had food testing done through my naturalpath and I've booked the test through Enterolab. I'm just going to go off gluten in two weeks to see how I feel. It's going to take me 2 weeks to research this and figure out how I'm going to survive. I love all things gluten. Would love to hear from someone with similar aches and pains b/c this doesn't seem to be the norm. Thanks!

Alison<_<

[gf4life]

Hi Alison,

I had (still have occasionally) joint pain really badly ever since I was a child. I've been gluten free for a few years now and it is much better.

I would like to mention to you though that you should NOT go on the gluten free diet until after you see the gastro specialist. They will most likely want to do an Endoscopic exam with biopsies and if you are gluten free for even a few days before that test it can mess up the results and give a false negative result. Even on a gluten-filled diet the test results can be questionable, so you really don't want to do anything to mess with them. Despite the problems with the biopsy it still remains the "gold standard" to diagnose Celiac disease. A positive biopsy means that you have Celiac, but a negative does not mean that you don't have it, it just means one of a few options: (a) they can't see the damage yet, ( they can't find the damaged patches, or © they can't diagnose it due to unskilled doctors/lab techs who don't know how to take a biopsy sample or what to look for under the microscope... There are just too many ways they can go wrong to make it a reliable test.

Lots of people have questionable blood test results. On of the reasons is that the antibodies leak into the blood stream at a different rate for each person. It usually takes a lot of intestinal damage for the antibodies to be at detectable levels in the blood, but you can still be completely ill with many symptoms. Lots of false negatives with the blood tests too.

The stool tests are more sensitive to picking up the antibodies. But as this is a fairly new method of diagnosis it is not widely accepted in mainstream medicine yet. But I believe it will be someday, and those of us who have been diagnosed by them know they are accurate. If they weren't then there would be no explaining why we all feel better on the gluten free diet.

The gene tests are fairly accurate. There is still research going on to determine if they have isolated ALL of the gene responsible for causing an intolerance to gluten, but it is widely accepted that DQ2 & DQ8 (which is really DQ3, subtype 8) are the two main genes responsible for this disease. Enterolab also tests for DQ1 & DQ3 genes that they say are gluten intolerance genes. Since my boys have these "other" genes and not only obvious reactions to gluten, but a very positive response to the gluten free diet, I believe this research is correct. They have never been so healthy in all their lives! I highly recommend the gene test.

[ravenwoodglass]

Does anyone else have any experience with bone aches and joint pain. I had what I call a flare up in Nov/Dec and for the last two weeks I've been experiencing another. In between I've had the occasional pains - usually in my hands. They started after my first pregnancy and got worse after the second. I'm exhausted b/c I'm not sleeping well b/c I'm uncomfortable and I'm just a little down. I feel like I'm losing my mind. One minute there's no pain, then the next minute I can hardly hold my daughter. What the heck is going on. My blood tests were mildly abnormal for Celiac (been referred to Gastro Doc). I just had food testing done through my naturalpath and I've booked the test through Enterolab. I'm just going to go off gluten in two weeks to see how I feel. It's going to take me 2 weeks to research this and figure out how I'm going to survive. I love all things gluten. Would love to hear from someone with similar aches and pains b/c this doesn't seem to be the norm. Thanks!

Alison<_<

It may not be the norm but you are not alone. After years of misdiagnosis I was on canadian canes and could barely use my hands. The arthritis in my back, knees and feet made walking close to impossible and getting up and down stairs took a very long and painful time. 6 months before I was finally diagnosed we spent thousands remodeling my home because it was felt I would soon be in a wheelchair. 6 months after diagnosis I caught myself running, yes running up the stairs without even thinking about it. I sat at the top and cryed with joy, literally, my DD thought I'd gone nuts. I didn't beleve my doctor when he said so many of my diagnoses were celiac related. I was just happy not to spend hours in pain in the bathroom. An accidental glutening will refire the arthritis but those flares are now few and far between. The joint damage is still there but I no longer have any pain at all. My recovery from near death has been more of an incentive to my family for testing than anything else. They have watched my hair grow back, my moods stabelize for the first time in my life, and my DH loves not paying the close to 20 grand we used to pay in co-pays alone for tests and meds and specialists that were for the most part useless. You have had a positive blood test. You should be gluten free. It seems daunting at first but if you keep it simple with whole mostly unprocessed foods at first that makes it easier. If you live in an area that has a Wegmans Market they label all their gluten free food with a circle G. I feel very fortunate to have one close it makes shopping easier. Welcome to the boards.

[LKelly8]

They started after my first pregnancy and got worse after the second. I'm exhausted b/c I'm not sleeping well b/c I'm uncomfortable

Alison<_<

Maybe vitamin/calcium depletion from the pregnancies? A damaged small intestine from celiac would certainly make it much worse.

Do you have any history of rheumatoid arthritis in your family? Do your joints actually look red and swollen, or just feel sore/stiff?

My mother, who's had celiac since infancy, has had sore/stiff joints from celiac. Also a strange "curling" sensation of the fingers and toes. There's a medical name for it, I can't remember it right now.

I have joint pain but it's from rheumatoid arthritis! RA (and other autoimmune diseases, like celiac) are known for flaring up after big, stressful events - surgery, major illness, pregnancy, etc.

[jnifred]

hmmmmm are you sure you're not my other half?????? I was diagnosed with clinical rhuematiod arthritis after the birth of son #2. Blood tests always came back normal, but my thumb was swollen to twice the size and my other joints refused to work properly. Couldn't open jars, squeeze bottles, etc. Wasn't good. Played with OTC meds for about 3 years, then when son #3 was born flared up REALLY bad post partum and still I tried various things. Finally went to Rhuemy doc and got diagnosed with RA and/or ankylosing spondylitis. Could get enough rest. I would sleep 12 hours and wake up exhausted, was achy, couldn't get comfortable...was a mess. Anyway, doc started me on meds, helped a lot. Got preg w/son #4, things post partum didn't come back as bad, but other issues started......my mom watched a show on Discovery Channel about Celiacs, and called me the next day to tell me she figured out what was wrong with us. Unfortunatly I had, over the course of the last several years, unknowingly modified my diet to the point that I could go for days without eating anything with gluten in it. So my internal med doc wasn't surprised when my blood test for celiac came back "normal", high side of normal, but still in the normal range. So I played around with gluten for a while and noticed a DIRECT link to my flare-ups and the other typical celiac symptoms when I ate gluten, whether it was accidental or on purpose b/c I was mad.

ANYWAY, I am now completely gluten free and I feel better than I have in YEARS!!! My jaw still bother me, but that I think is more from other stressors in my life and the fact that I got braces about 2 months ago (oldest son got them, and I thought what the heck??) anyway........you are not alone.....

[rumbles]

Parathesias and bone pain are symptoms of celiac disease. They are also symptoms of other diseases. Once your testing has been completed, whether the results are positive or negative, it would not harm you to go on the gluten free diet, at least temporarily, to see if your symptoms resolve when you take gluten out of your diet. Be aware that gluten resides in a great many foods and products, including sauces, flavorings, seasonings, some salad dressings, some butter spreads, - even in the glue on envelopes and stamps, in some cosmetics (including lipsticks), in many candies (including licorish and hard candies); the easiest diet to start out with would be a "raw" diet, - one based on plain meats, fresh vegetables, fresh fruits, with any add-ons being checked first with the manufacturer to see if the product is gluten free, and if it is produced in a gluten free facility (so there is no potential cross contamination). When on the diet, make sure that you are getting plenty of fresh vegetables and fruits, to make sure that your getting the vitamins and minerals that your body needs.

Be aware that wheat-free on a label does not mean gluten free. Many manufacturers will list on their web sites whether or not a product is gluten free (some list potential for cross contamination, but not all); if they don't, most have a way to contact them (either phone number or email). Do not hesitate to contact the manufacturer if you are not sure.

Many over the counter medications, vitamins and supplements contain gluten, - check the label, and check with the manufacturer if needed. Many oral prescription medications contain gluten, - check with your pharmacist or the manufacturer. Some toothpaste formulas have gluten in them. Be aware of everything that you put into or around your mouth when you are attempting to go gluten free. It's a pain in the beginning, but if you find that you need to stay on the gluten free diet, it will become easier with time.

There are many posts in these message boards about gluten free food manufacturers and where to buy gluten free products, - this is a great place to start. If you need to remain on the diet, accept that there will be occasional mistakes, but they become fewer and fewer as you become more familiar with allowable foods. Good luck!