Rheumatoid Arthritis & Celiac Connection?

[MESAs Mom]

I have two children who have been diagnosed with Celiac through diet. My youngest displayed many symptoms as a baby and when put on a gluten-free diet, he was completely healthy. He went from taking 6 different meds everyday to simply being on a gluten-free diet. He had the celiac panel run as well as an EGD with biopsy. Both came back inconclusive because of his age. I didn't bother going further with testing because the diet worked SO well and it was such a dramatic change. Then I noticed milder symptoms with my next oldest daughter and put her on a gluten-free diet as well.

My oldest son is now displaying sign of rheumatoid arthritis. We just began the testing process for that this week with blood tests. It just dawned on me though, that RA is also an autoimmune disease. I am wondering if maybe his symptoms could be from Celiac and not RA? Does any one have any experience with RA symptoms turning out to be Celiac or I am way off base here???

[cassP]

  On 9/14/2010 at 9:24 PM, MESAs Mom said:

I have two children who have been diagnosed with Celiac through diet. My youngest displayed many symptoms as a baby and when put on a gluten-free diet, he was completely healthy. He went from taking 6 different meds everyday to simply being on a gluten-free diet. He had the celiac panel run as well as an EGD with biopsy. Both came back inconclusive because of his age. I didn't bother going further with testing because the diet worked SO well and it was such a dramatic change. Then I noticed milder symptoms with my next oldest daughter and put her on a gluten-free diet as well.

My oldest son is now displaying sign of rheumatoid arthritis. We just began the testing process for that this week with blood tests. It just dawned on me though, that RA is also an autoimmune disease. I am wondering if maybe his symptoms could be from Celiac and not RA? Does any one have any experience with RA symptoms turning out to be Celiac or I am way off base here???

i dont know about misdiagnosis of Celiac vs. RA.. but you're not way off base on a possible connection. i have heard over and over in the last year how most people have more than one autoimmune disease. it's very common to have 2 or 3! BUT its not always like that either.

The Genes have to be there for the possibility of the autoimmune disease to be triggered. ive also seen a lot of literature lately suggesting gluten could trigger or aggravate RA, MS, Lupus, Thyroiditis, Hashimotos.

anyways... try to relax, and see what the doctor's tests show- it may not be RA at all...

[ravenwoodglass]

There is one celiac associated gene that is considered an RA gene here in the states.It is the one I have a double copy of. I was thought to have RA for quite some time. My arthritis has been in total remission since about 6 months after I started the diet. Celiac causes a great deal of inflammation and that inflammation can attack just about anywhere in the body. Hopefully your son's issues are gluten related and the diet will nip things in the bud before they become severe. Celiac is highly genetic and it can show up differently in different family members. It is quite common for more than one member in the family to be affected.

[chasbari]

I was diagnosed with RA ten years before my celiac diagnosis. The RA was so severe by the time of my celiac DX that I could barely walk anymore and was having many other complications. Within forty eight hours of going strictly gluten-free and grain free and dairy and soy free my RA just seemed to melt away. I went from two plus hours gel time in the morning before I could kind of stoop and shuffle to being able to wake up and run (and, no.. not to the bathroom!) My rheumatologist refused and still refuses to believe that my RA could possibly be secondary to celiac and even denies that I have celiac in spite of a very positive endoscopy. No matter. I haven't seen him for a long time now because of a general lack of symptoms for RA.

[MelindaLee]

  On 9/14/2010 at 9:24 PM, MESAs Mom said:

I have two children who have been diagnosed with Celiac through diet. My youngest displayed many symptoms as a baby and when put on a gluten-free diet, he was completely healthy. He went from taking 6 different meds everyday to simply being on a gluten-free diet. He had the celiac panel run as well as an EGD with biopsy. Both came back inconclusive because of his age. I didn't bother going further with testing because the diet worked SO well and it was such a dramatic change. Then I noticed milder symptoms with my next oldest daughter and put her on a gluten-free diet as well.

My oldest son is now displaying sign of rheumatoid arthritis. We just began the testing process for that this week with blood tests. It just dawned on me though, that RA is also an autoimmune disease. I am wondering if maybe his symptoms could be from Celiac and not RA? Does any one have any experience with RA symptoms turning out to be Celiac or I am way off base here???

I was referred for testing 2 years ago for RA. The testing came back negative, but I was diagnosed with arthritis related to my psoriasis (I can never remember the exact term). I was on meds for 2 years. A month ago I was dx with Celiac after an endoscopy was done to rule out the cause of pain in my upper right quadrant (my gallbladder) I have been gluten free for 4 weeks, and I have been off my arthritis meds for about a week and a half. The only time I notice the join pain is when I mess up and gluten myself.

I don't claim to know the answer to your question, but I wanted to let you know what I have experienced. (The psoriosis is also auto-immune. I was also tested for Lupis and thyroid issues..which are all gone now)

[cassP]

  On 9/15/2010 at 1:17 AM, chasbari said:

I was diagnosed with RA ten years before my celiac diagnosis. The RA was so severe by the time of my celiac DX that I could barely walk anymore and was having many other complications. Within forty eight hours of going strictly gluten-free and grain free and dairy and soy free my RA just seemed to melt away. I went from two plus hours gel time in the morning before I could kind of stoop and shuffle to being able to wake up and run (and, no.. not to the bathroom!) My rheumatologist refused and still refuses to believe that my RA could possibly be secondary to celiac and even denies that I have celiac in spite of a very positive endoscopy. No matter. I haven't seen him for a long time now because of a general lack of symptoms for RA.

Love your story... these poor docs, they just cant think out of the box

[cassP]

  On 9/15/2010 at 2:13 AM, MelindaLee said:

I was referred for testing 2 years ago for RA. The testing came back negative, but I was diagnosed with arthritis related to my psoriasis (I can never remember the exact term). I was on meds for 2 years. A month ago I was dx with Celiac after an endoscopy was done to rule out the cause of pain in my upper right quadrant (my gallbladder) I have been gluten free for 4 weeks, and I have been off my arthritis meds for about a week and a half. The only time I notice the join pain is when I mess up and gluten myself.

I don't claim to know the answer to your question, but I wanted to let you know what I have experienced. (The psoriosis is also auto-immune. I was also tested for Lupis and thyroid issues..which are all gone now)

i think its called Psoriatic Arthritis. i have a client who has that AND Psoriasis in patches all over his body- he thinks he has a Candida problem but says he has no problem with wheat. (??? WHAT??? and im just a massage therapist- so i kind of have to keep my dietary comments to myself)

and then there's that Professional Golfer who just got diagnosed and now is becoming a Vegan.

i SERIOUSLY think Gluten is a contributing factor- and wish i could tell everyone... but people get tired of hearing me talk

[weluvgators]

We have experienced arthritic issues that seem to be rooted in gluten exposure. Our daughter was hospitalized twice this summer with idiopathic episodes. In all of the doctors that we have seen, they do not know why we are having the issues that we are. And in response to whether or not it is related to our celiac and gluten intolerance issues, one of the doctor reports summed it up well, "It is difficult to completely exclude any association." Both hospitalizations followed a more than usual exposure to "gluten free" processed foods, and we have been unwilling to test processed foods again since then. We had a lot of physical setbacks with our hospitalizations, and it only seems to have further complicated our already mysterious issues.

Big hugs, Mama! Watching our daughter suffer from debilitating arthritis episodes was hard on our whole family. It is just heartbreaking to watch a child suffer like that.

[mushroom]

I was initially diagnosed with RA although I tested sero-negative. However, when the psoriasis arrived the diagnosis was changed to psoriatic arthritis. I went gluten free on my own initiative hoping to help my arthritis, but was taking meds too. As I became intolerant to the meds one by one the arthritis would recur, the Plaquenil made the psoriasis so much worse, and eventuallly I ended up on Humira to get relief from the pain. However, I have been spacing my injections farther and farther apart (supposed to be every two weeks), and I am hopeful after 2-1/2 years of being able to wean myself off them. I have intolerance to many lectins (gliadin in gluten is a lectin), and I think I have now identified and eliminated them all, so we shall see if that makes a difference.

[ryebaby0]

My son was dx with RA by his pediatrician, and that dx was confirmed by a peds rheumy.(Although she thought some of his numbers were inconclusive, but his symptoms were severe so she started prednisone anyway) Hands, knees, ankles were the worst, it was the pronounced limp and inability to run (he was 9)that first sent us to the doctor. He had pain at night, and his fingers also started to distort.

Several weeks later he was dx with celiac. While his gi symptoms did not relent once GI, his RA symptoms disappeared completely in about a month and have never returned. So yes, it's possible to be misdiagnosed with RA, and skips the NSAIDS. It is also true that autoimmune disorders can "come in groups" .

[cassP]

  On 9/18/2010 at 6:02 PM, ryebaby0 said:

My son was dx with RA by his pediatrician, and that dx was confirmed by a peds rheumy.(Although she thought some of his numbers were inconclusive, but his symptoms were severe so she started prednisone anyway) Hands, knees, ankles were the worst, it was the pronounced limp and inability to run (he was 9)that first sent us to the doctor. He had pain at night, and his fingers also started to distort.

Several weeks later he was dx with celiac. While his gi symptoms did not relent once GI, his RA symptoms disappeared completely in about a month and have never returned. So yes, it's possible to be misdiagnosed with RA, and skips the NSAIDS. It is also true that autoimmune disorders can "come in groups" .

oh thats FANTASTIC!! that his RA symptoms disappeared. i love stories like that

[kayo]

I was diagnosed with RA when I was 3. Symptoms began at age 1.5. I've dealt with severe RA my whole life. The GI issues began about 5 years ago and this year I was diagnosed with Celiac and then non-Celiac gluten intolerance since I don't have the classic celiac gene. I'll bet a zillion bucks I actually have celiac and have had it my entire life. I had a rheumy who didn't believe there was a connection. So guess what? Got a new rheumy! I also have Sjogren's and psoriasis, secondary to the RA and non-Celiac. I hae an endoscopy and colonsocopy coming up soon. I'm quite curious what shows up. I've been gluten-free for 15 months. They're not looking for celiac specifically so I didn't need to go back on gluten, thank goodness.

The good news that if a child is diagnosed today with RA there are some amazing meds on the market that didn't exist when I was younger. I take enbrel which has put my RA into remission. On top of that all my diet changes have really made a huge difference. For example, my ankles no longer swell like crazy.

[MESAs Mom]

Thank you all SOOOO much! I was sitting and thinking about all of the symptoms and possibilities (they wanted to look into leukemia) and it was as if a light bulb went off. Maybe it's because of the gluten! It's reassuring to hear that there are related instances out there and that maybe this might be it. How easy that would be!!! I never thought a gluten-free diet would be the "easy" answer when going through this with my youngest 5 years and no doctors being able to "fix" him until a friend suggested I looked into celiac. It's SO incredibly frustrating that doctors are more willing to prescribe meds to treat symptoms rather looking for the true cause and root of the problems. Its so great to have a place like this to come and have your worries/thoughts justified! Thank you all!!

[RobinsEggBlue]

  On 9/14/2010 at 9:24 PM, MESAs Mom said:

I have two children who have been diagnosed with Celiac through diet. My youngest displayed many symptoms as a baby and when put on a gluten-free diet, he was completely healthy. He went from taking 6 different meds everyday to simply being on a gluten-free diet. He had the celiac panel run as well as an EGD with biopsy. Both came back inconclusive because of his age. I didn't bother going further with testing because the diet worked SO well and it was such a dramatic change. Then I noticed milder symptoms with my next oldest daughter and put her on a gluten-free diet as well.

My oldest son is now displaying sign of rheumatoid arthritis. We just began the testing process for that this week with blood tests. It just dawned on me though, that RA is also an autoimmune disease. I am wondering if maybe his symptoms could be from Celiac and not RA? Does any one have any experience with RA symptoms turning out to be Celiac or I am way off base here???

I don't think you are. Throughout my 20's, 30's, 40's I was told I had IBS. I suffered from many other things as well. Chronic sore throats, Migraines, insomnia, chronic fatigue. Then I started to have pain everywhere. I was told it was fibromyalgia. Then a doctor tested me for Lyme and said I had the antigens for it so I must have had it at some point many years prior. Then a new doctor I found for the Lyme tested me for food allergens. Turns out I have two of the genes for Celiac and test positive for soy as well.

First things she did besides having me remove the allergens was to have me go organic and get away from all pesticide residues. She also said not to use plastic for anything and no microwaves for cooking, etc. I have done that. Going gluten-free made such a huge difference for my digestion. The migraines are gone. I wish I could say all the symptoms are gone, but they aren't. She says it is because I spent so many years eating gluten and soy that I have damaged my intestines.

Now, about 1 1/2 years ago she diagnosed me with RA/Reiters Syndrome. Reiters is an RA like syndrome where it appears after a major infection.

The sad part about having both RA and Celiac is that the biologics (injectible auto-immune drugs) are ALL "possibly" contaminated by materials that Might have come from Wheat sources. They cannot guarantee them to be gluten-free. That wipes out a complete group of drugs used to treat RA. Amazingly, not a one of these drugs lists the possibility of wheat in their ingredients list. I have complained to the FDA but got no response. I've called the drug companies and complained to their pharmaceutical customer service people.

I'm not finding much information so far on RA/Celiac disease. I'd love to hear about it if you do~

Mellan

[mushroom]

  On 10/10/2011 at 12:25 AM, Mellan said:

I don't think you are. Throughout my 20's, 30's, 40's I was told I had IBS. I suffered from many other things as well. Chronic sore throats, Migraines, insomnia, chronic fatigue. Then I started to have pain everywhere. I was told it was fibromyalgia. Then a doctor tested me for Lyme and said I had the antigens for it so I must have had it at some point many years prior. Then a new doctor I found for the Lyme tested me for food allergens. Turns out I have two of the genes for Celiac and test positive for soy as well.

First things she did besides having me remove the allergens was to have me go organic and get away from all pesticide residues. She also said not to use plastic for anything and no microwaves for cooking, etc. I have done that. Going gluten-free made such a huge difference for my digestion. The migraines are gone. I wish I could say all the symptoms are gone, but they aren't. She says it is because I spent so many years eating gluten and soy that I have damaged my intestines.

Now, about 1 1/2 years ago she diagnosed me with RA/Reiters Syndrome. Reiters is an RA like syndrome where it appears after a major infection.

The sad part about having both RA and Celiac is that the biologics (injectible auto-immune drugs) are ALL "possibly" contaminated by materials that Might have come from Wheat sources. They cannot guarantee them to be gluten-free. That wipes out a complete group of drugs used to treat RA. Amazingly, not a one of these drugs lists the possibility of wheat in their ingredients list. I have complained to the FDA but got no response. I've called the drug companies and complained to their pharmaceutical customer service people.

I'm not finding much information so far on RA/Celiac disease. I'd love to hear about it if you do~

Mellan

Mellan, I have taken Humira injections for three years now for my RA and have not had any problems with it. It has been a lifesaver for me. It does suppress your immune system so much, however, that you have to go off it if you are trying to heal an infection. I have a skin condition that makes me very susceptible to celllulitis, and have been off it for three months now, and so far I have had no recurrence of the RA (first time I have been off it this long, and once before when I was off it the symptoms came roaring back). If you are a super sensitive (which I am not) I suppose it could be a problem, but it has not been for me. I went through the fibromyalgia, insomnia, fatigue, susceptibility to viral infections, all my life and figured I was too far gone for diet to have any effect on my non-GI symptoms, but right now, almost four years gluten (and soy) free, I am hopeful (although the psoriasis can still be a bit troublesome).

There is a definite RA/Celiac link although my U.S. rheumatologist has never heard of it (I really can't be bothered educating him, I just need my Humira prescription from him) but my New Zealand one has. The U.S. rheumy says he has never had a patient with celiac, and I asked him how many he had tested for it Of course, you know the answer.

[domesticactivist]

My son had arthritic pain on and off from the time he was very small, also bone pain and muscle cramps. Finally just before turning 10 he was hospitalized for what they thought was "septic hip" but later deemed a "reactive rheumatoid arthritis" potentially due to pneumonia. They saw indications in his blood work that it was autoimmune, tested him for leukemia (just by blood), lupus, etc, but NOT celiac. Grrrrr.

My partner figured out it could be gluten. Since taking him off gluten, the only times he's gotten joint pain or bone pain has been when he's been accidentally exposed to gluten. He's been off it for a year now, and numerous other problems have resolved for him as well.