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Daughter Diagnosed With Rheumatoid Arthritis

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Posted 29 January 2013 - 06:00 AM

My daughter, who is 38, was just diagnosed wih Rheumatoid Arthritis. I am celiac and I am very sure that my mom was undiagnosed celiac, she had every sympton in the book! Has anyone experienced a connection between the arthritis & celiac? She has no medical insurance so there can't be any further testing. She was diagnosed through a free clinic so you know they won't take the next step to do more testing. I was just wondering if anyone else has experience with this disease?
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Posted 29 January 2013 - 06:31 AM

I have a few friends with RA (since a very young age, most of them) and as far as I know none of them are celiacs, but we all know the diagnosis can be elusive. Anyway, there probably is a connection, there usually is because once you have one autoimmune disease (like RA), you tend to get other ones unfortunately. Some people think gluten and celiac may be responsible for increasing susceptibility to other autoimmune diseases but I'll let someone else talk about that. I'm sorry your daughter has RA :( I hope she is able to get some treatment despite her lack of insurance and find something that works for her.
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Posted 29 January 2013 - 07:59 AM

My daughter was diagnosed with RA and Lupus at 13 - Fibro and Sjogrens in the years that followed -- she is now 29. She wasn't diagnosed with Celiac Disease until I was diagnosed with it four years ago. Do we think the undiagnosed Celiac Disease played a part in her developing the other AIs - yep.

Celiac Disease and all Autoimmune Disorders play very well together -- it is common to have Celiac along with other AIs.

If your daughter hasn't removed gluten yet, I suggest getting a full celiac panel. Although I highly suggest full celiac and nutrient testing -- removing gluten will likely improve her RA -- removing nightshades (tomato, potato, all peppers and eggplant) also helps some with arthritis.

Send her here if she has questions -- lots of us have multiple AIs and will be happy to answer questions.
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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


ALWAYS independently research health related information found on internet forums/blogs.

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Posted 29 January 2013 - 08:07 AM

I'm sorry to hear of your daughter's diagnosis. :(

I know there is a link between many autoimmune disorders and celiac (and Hashimotos especially) but I don't have any stats to quote for you. I do have one cousin who is celiac and her brother has RA. Based on what I know of his disease, if your daughter has an active form of the disease, she should probably seek out treatment to help hold the disease at bay to reduce the chances of permanent damage to the joints.

As Lisa said, going gluten-free is starting to be recommended for many AI diseases including RA. For many it helps keep inflammation down so the disease isn't as active as it could be.

Some scientists are starting to group the AI diseases that are often found together but I'm not sure if that is a generally accepted idea. It's often mentioned under Polyglandular autoimmune Syndrome (PAS) if you want to look it up.

Best wishes to your daughter.
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Posted 29 January 2013 - 11:51 AM

I went through several rheumatoid diagnoses (polymyalgia rheumatica, RF-negative rheumatoid arthritis, finally psoriatic arthritis when the psoriasis made its appearance) all before going gluten free -- on my own accord, not because any doctor made the connection. I started eating gluten free because someone I know was treating his ankylosing spondylitis with a gluten free diet. Little did I know that gluten-free would cure my digestive problems too. :)

I wish I could tell you that gluten-free made the arthritis go away, but sadly it did not, although it is heaps better, especially since - as Lisa says - I ditched the nightshade family from my diet too. When I have flares I do still have to take one of the new TNF-inhibitor drugs to control them, but I don't take these continuously (which is every two weeks) because they do wreck your immune system. Instead, now that I am without gluten and nightshades, I take them for a month or two until things are under control and then I can usually take a break of four or five months. This has prevented disability; my formerly stiff joints have freed up and all I have left are slightly chubby fingers and toes which are however fully functional.

I would urge your daughter to get tested and go gluten and nightshade free right away to prevent further disability. I initially tried all the DMARD drugs and unfortunately had bad reactions to them all, but some people handle methotrexate quite well and it is the one recommended to prevent joint damage.
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 30 January 2013 - 06:48 AM

One of the biggest surprises, and one of the most welcome ones, after I was finally diagnosed celiac and went gluten free was that my arthritis went into remission. It took a couple of months but it was so nice to be able to hold a coffee cup, walk, type or button my clothes without pain. My hands still look a bit wonky but the pain is gone. I found out a couple years after diagnosis that the celiac associated gene I carry a double copy of is considered an RA associated gene here in the US. In some other countries it is considered a celiac associated gene. After all testing for celiac is done do advise her to go gluten free strictly for at least 3 to 6 months. I can't be sure that it will help her and not everyone who goes gluten free has arthrits go into remission but she has nothing to lose.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)



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Posted 31 January 2013 - 01:30 PM

my daughter was diagnosed with r.a. many years before i had even HEARD of celiac. i suspect two of my kids should also be gluten-free (the one with the r.a. and the one with diabetes) yes, i do believe it's related... unfortunately.... :(
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misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010


only YOU can prevent forest fires - smokey t. bear


have a nice day :)

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Posted 31 January 2013 - 02:36 PM

Did they perform blood tests for the rheumatoid arthritis diagnosis, and did she test positive for it on those tests for C reactive proteins and rheumatoid factor ? Is your daughter living in an area with a lot of deer ticks and Lyme disease, and has she been tested for that, as well ? Sometimes Lyme triggers an arthritis which is very much like it.

As others have said, is there any way she can get a blood panel run for celiac disease, does she have any matching symptoms or any neurological ones, such as peripheral neuropathy (numbness in extremities) or ataxia (lack of balance coordination, dizzyness) or brain fog?

I was diagnosed with idiopathic (cause unknown) spinal arthritis waaaaay back in the early 1980's, when I was under age thirty, and this is pretty rare in a female, fortunately my physician at that time did not rely just on blood tests, because I was also sero- negative (blood test negative) for everything that they have run, but actually did the x- rays himself (can you imagine that now ?! :o ) and was so surprised by what he saw :ph34r: that after showing them to me and discussing it, I was sent for more scans, yes, there it is. I also had cousins who had other types of arthritis. Duh, runs in family. I also had a lot of kidney problems. I didn't really think much of this until almost 20 years later when I would go to new doctors in another state we had moved to, and they would look at me and announce that I could not possibly have this type of arthritis, in a very patronizing sort of way. This is what performing daily physical therapy for over a decade will do to a person. (need sarcasm icon). Since I am not exactly reticent and demure, you can imagine some of the discussions I have had, (insert devil icon :angry: ) about this with medical persons who made similar dumb remarks, until we finally got a PPO doctor who looked at the more- recent scans and was sort of astonished that somebody who scans like this can still move and is not incapacitated. He's also heard the story about the neuro who tried telling me my brain lesions didn't mean anything- other than I was faking my other symptoms, and just shook his head. :huh: I may just finally catch up to my bone and joint age yet.

I was also frequently tested for MS (negative, of course) and Lupus (negative, of course).

I originally tried a grain free, low carb, low starch diet, because all my internet research was saying that it was not going to hurt me and that there was a small group of people with arthritis and MS type symptoms, which it helped. Grain free coincides with gluten free, if you do it very seriously. I can specifically remember the comment on an internet chat board that set off this idea in my head to look at it, and how it led to another board and more research.

I don't know what it does (gluten free) for rheumatoid arthritis, but I have read enough here that certainly one should at least attempt to get tested for celiac, and then don't be afraid to experiment with a diet change, including trying gluten free, to see how one responds. Gluten gives me flares. Definitely. Eating nightshades doesn't bother me, but I do certainly believe that they bother others - there are LOTS of stories on the internet now about lectins and nightshades and arthritis. I hope that your daughter can have a positive outcome out of this.
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Posted 31 January 2013 - 10:47 PM

I have Celiac Disease, Asthma, Rheumatoid Arthritis, and gout, which IS Rheumatoid Arthritis. I am female, 68, but mostly men suffer from gout, so I was surprised when that diagnosis came in. I've had Asthma since the age of 8 and probably Celiac always, but the gout and arthritis came in 2002 after I went vegan. I am now strictly fruits and vegetables, because when I touch chicken, fish, turkey or meat, within one day I have pain in my right leg from rheumatoid arthritis so bad that I have a hard time walking. If I continue eating those, the pain extends to my whole body and I also get so congested that I have a hard time breathing. Yes, nightshade vegetables also aggravate the arthritis (tomatoes, potatoes and eggplant). So, no grains, milk & dairy, egg whites, yeast, maltodextrin, msg, casein, whey, and, recently, asparagus, cauliflower and spinach, which experts say aggravate gout, which is evidenced by a throbbing, inflamed, painful big toe.

Here's the good news--if I walk an hour each day, stay on this strict diet, and drink a lot of liquids, I feel good. I also sleep well. There IS hope. The arthritis CAN go away, in my opinion. Our bodies will tell us what we need. It is probably different for each person, but I hope that your daughter learns what she can tolerate, and ends up healthy and happy!
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Posted 01 February 2013 - 07:40 PM

I have both celiac and rheumatoid arthritis. There are several things she can use to help (there is no cure) for her RA. I've had to be off my meds for a while now and met with a Master Herbalist. She has me on tumeric extract, ginger extract, fish oil, tart cherry juice, Vitamin D and I take oil of oregano extract for my allergies. These help a great deal, not like the meds do, but if she can't afford the meds due to the insurance issue, she can get these other things at a health food store, most are not expensive at all. Nightshades make no difference whatsoever to my RA but carbonated beverages and citrus fruits are HORRIBLE for me. Gentle exercise is very important, like the commercial says "a body in motion stays in motion".
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hypoglycemic (diagnosed 1997 but symptomatic since grade school)
rheumatoid arthritis (diagnosed January 2005)
peanut allergy

restarting gluten-free January 20, 2013

elevated liver enzymes + symptoms indicated celiac January 31, 2013. Dr. didn't want to run further tests due to other health complications



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Posted 03 February 2013 - 09:47 AM

Thank you all for your responses. I will forward this on to her. She lives in the Seattle area and was diagnosed through a blood test. To get her to go gluten free.... sigh. I will work on it!
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