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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Joint Pain/swelling And Tendonitis
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15 posts in this topic

Hi everyone,

I am 31 and have been experiencing worsening joint pain, swelling, and stiffness in both hands, knees, and TMJs, and my right ankle for over a year. I was recently diagnosed with celiac and have now been gluten-free for a month and a half. My rheumatologist says that my tendons are inflamed and thinks it's all related to the celiac. She started me on prednisone, but as soon as I decrease the dose, it flares up again. Does anyone else have problems with joint pain/swelling/stiffness and/or tendonitis? If so, how long did it take to feel better after going gluten-free? I'm really hoping that this is all due to the celiac and not something else. I love to work out and lift weights and I really want to get back to the gym as soon as possible.

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I had joint pain so bad I was bed ridden and swelling in my hands and ankles most noticeably. I went gluten free soy free and dairy free at the same time, so I can't say for sure that gluten was the only culprit. I do notice that my joints hurt most if I eat something with soy. It took at least two months before I was up and about and not having as much pain. At six months I noticed I was back to normal levels of activity. I'm a year in and I still get some stiffness and minor joint pain when I overdo it (although not nearly bad enough to require meds or bedrest). So give it lots of time and after a few months if you see no improvement at all, consider other food intolerances that may be adding to the inflamation. Also make sure your vitamin levels are what they should be.

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I want to ditto GlutenFreeManna. Prior to going gluten-free in October my joint & muscle pain was really awful. It hurt to get up from a chair and walk up stairs some days. The inflammation in my right hand was becoming painful all the time.

I had to not only go gluten-free, but also dairy & soy free. I also found corn causes inflammation. Soy is the worst, however. Everytime I have a bad flare up (it's not gone completely in just a couple of months yet but does improve) it's always because of one or more of the four offenders.

I hope you see improvement soon. Know how you feel.

FooGirlsMom

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To start with, I'm more than double your age so things will probably move slower for me than for you!

I was diagnosed with Celiac two years ago, but didn't really take it seriously until March 2010 and I seemed to be progressing well (according to blood tests) when something unknown happened in June or July which sent my antibodies soaring. Along with that I started getting lots of what I term migratory aches and pains - left big toe, right knee, achilles tendons, etc. My doc insists that its all gluten related, because the calcium is being pulled out of the bone due to malabsorption. So the pains are still with me. My rheumatologist says I have osteoarthritis not rheumatoid, for which I'm grateful! But, trying to find out the causes of this pain is really frustrating. I do take many vitamins that my doctor recommends and was not having any pain like this prior to this summer. So I'm down to trying to discover if any of the generic prescriptions I'm taking changed formulas. I did discover one had changed from using saccharin as a sweetener to using Stevia, but so far that's the only one. Any input from others experiencing (or hopefully, were experiencing and are no longer!) will be appreciated. I will say that my aches and pains (joint and muscular) appear in the wee hours of the morning, around 3:00 or 4:00am and last much of the day.

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I was plagued throughout my lifetime (from birth) with joint, bone, and tendon pain and inflammation, and I didn't learn I had celiac until I was 47. I can't recall how long it took for the pain to recede, but it did completely disappear within about 18 months. I'd even had fairly severe carpal tunnel problems that disappeared (my son, who was 16 at the time he found out he had celiac, also had his carpal tunnel pain recede on a gluten-free diet).

That said, there can be some specific things besides celiac that can cause your conditions. Have you had your thyroid tested? Thyroid problems are very common in people with celiac, and joint and tendon problems can result. Also, certain nutrients help maintain tendon health, and doctors are generally not very knowledgeable about nutrition. I recently had terrible problems with my tendons following an accidental glutening at a potluck party. However, after doing some research, I was able to overcome the nutritional deficiencies and am feeling much better now. The nutrients I had to take were zinc and manganese in amino acid, chelated form and silicon. However, since taking too much zinc or manganese can be harmful, you might wish to get tested to see if you're deficient in either of these nutrients before taking them. As for the silicon, I can highly recommend Bio-Sil.

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I started having joint and muscle pain this past year, and it became extreme. I had paralyzing pain, swelling, and stiffness in almost every joint and muscle in my body. At 29, I went from perfectly fine to practically crippled and in excruciating pain within a matter of weeks. I went from jogging 5 miles a day to barely being able to dress myself. What followed was several months of medication, exams, and hospitalization, similar to what many here have experienced. Eventually I figured out by myself that I was gluten intolerant.

Before I had figured it out, a rheumatologist had put me on prednisone. While it was a relief, it's not without its problems (as are all medications). You see, your adrenal glands make the hormone that controls inflammation in your body. Prednisone shuts down the adrenal glands and does their job by artificially controlling the inflammation. If you go down a lower dose, your adrenals have to start waking up and working to control the inflammation again, and this will take them some time.

It takes at least 3 months for your body to make hormonal changes (which it does once gluten is removed from your diet), including those related to inflammation. Unfortunately, my (not very good) rheumatologist had me on prednisone for 9 weeks, which delayed my adrenal glands from starting make these changes. I've been gluten-free for 4 months, and medication-free for 2 months. I still have aches and pains and mini flare-ups (which I have yet to pinpoint the causes of), but I am greatly improved. So there is hope! I'm hoping that within a couple more months I'll be back to normal.

Here's my advice to you, which you can take or leave:

1. Make sure that you aren't accidentally consuming any gluten.

2. Try an elimination diet in which you don't eat all the major allergens plus foods such as corn, potatoes, tomatoes and other foods associated with pain and inflammation. After being off of them for some time, you can start to introduce each of these foods (except gluten, of course) to see what you react to.

3. Talk to your doctor about coming off prednisone and about how it affects your adrenal glands and their function. The less medication you take, the better.

Be well!

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One more thing! Check what vitamins and mineral your body needs, and make sure you take them in a way that increases absorption. Your body will need them to repair itself. For example, I am low on iron, D, B12, and folic acid, but I can't take my iron and D at the same time because D blocks the body from absorbing iron, so I have to space them out by a few hours. (Oh, and Vitamin C helps the body to absorb iron, while coffee, tea, dairy and egg block absorption.)

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Thanks to you all for your insights and sharing. I will try to "digest" all and come up with a plan....I don't have a thyroid gland anymore as I had a huge, hidden goiter surgically removed about 5 years ago, which is one of the clues my new doctor used to suspect I had Celiac. I am on levo thyroxine, too, and will check to see who the manufacturer is and if they claim gluten free. Unfortunately, I've learned that there may be a limit of <20ppm that companies use to say they're gluten free (much like the trans fat labeling). So even if they claim gluten-free, might not be 100%. Therefore, I will ask my doc about Armour Thyroid. It surely must be 100% gluten-free!

My problem is, I was doing pretty well and didn't have these debilitating aches and pains until last summer...and trying to figure out what happened is pretty impossible, so all I can do now is "start over."

I'm fortunate that my doc is well-versed in vitamin/mineral therapies (and he's an MD to boot!)

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Thanks to you all for your insights and sharing. I will try to "digest" all and come up with a plan....I don't have a thyroid gland anymore as I had a huge, hidden goiter surgically removed about 5 years ago, which is one of the clues my new doctor used to suspect I had Celiac. I am on levo thyroxine, too, and will check to see who the manufacturer is and if they claim gluten free. Unfortunately, I've learned that there may be a limit of <20ppm that companies use to say they're gluten free (much like the trans fat labeling). So even if they claim gluten-free, might not be 100%. Therefore, I will ask my doc about Armour Thyroid. It surely must be 100% gluten-free!

My problem is, I was doing pretty well and didn't have these debilitating aches and pains until last summer...and trying to figure out what happened is pretty impossible, so all I can do now is "start over."

I'm fortunate that my doc is well-versed in vitamin/mineral therapies (and he's an MD to boot!)

did you start a new bottle of thyroid med shortly before your problems started? The pharmacy will fill the script with whatever generic they have on hand, so it could conceivably change every time you have it filled. check out the brand name, i think it does contain gluten.....and check out the various generics. good luck

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Thank you everyone for sharing your stories. I truly appreciate all of your insight. Happy and healthy New Year to all of you!

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did you start a new bottle of thyroid med shortly before your problems started? The pharmacy will fill the script with whatever generic they have on hand, so it could conceivably change every time you have it filled. check out the brand name, i think it does contain gluten.....and check out the various generics. good luck

I really can't remember if I started a new bottle. I did phone the mail order pharmacy to see if they had changed providers in the past year and the pharmacists claimed they hadn't. I got the name of the manufacturer and phoned them. They claimed that their facility is gluten free....but I wasn't as knowledgeable then as now, so I think I'm going to do some more phoning to find out just what that statement means to them! Thanks.

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Gluten, soy and dairy cause a little swelling but what really caused a lot of my joint pain and swelling was the nightshade veggetables. Within 6 weeks my joints were doing good. Nightshades are potatos, tomatos, all bell peppers, okra and eggplant.

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Gluten, soy and dairy cause a little swelling but what really caused a lot of my joint pain and swelling was the nightshade veggetables. Within 6 weeks my joints were doing good. Nightshades are potatos, tomatos, all bell peppers, okra and eggplant.

Well, I'm willing to try. I have given up ALL grains, including rice just to see. (My step daughter (also celiac disease) found that the sorghum in some mixes bothers her.) Unfortunately, my husband loves his potatoes...but it really doesn't bother me to give things up even if someone else is eating it infront of me. I just want to STOP HURTING!!

My question is, why didn't these things occur when I was not on a gluten-free diet? and of course I'll always be curious why they started after things looked like they were going "swell" because I sure don't want to do the same thing(s) again!

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Well, I still have my joint and tendon pain even after being gluten-free for a little over two years now. I would've thought that maybe my pain would gradually subside, but no. I still hurt just as frequently as I did before I went gluten-free. (Which is usually anywhere from 12-19 days every single month. And I can have pain in up to 4 areas at one time.) As soon as I stop being lazy, I'm going to start trying to exercise and drink more water to see if that helps. If not, I'll just go back to my rheumatologist. When she last saw me, she wanted to try me on Sulfasalazine pills--but I never filled the prescription. I think if I don't see any results after 6 months of exercising--I'll give the meds a try.

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Just for the record, okra is not a nightshade, but it does contain solanine which is the harmful part of the nightshade family of plants.

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