Daughter Diagnosed With Rheumatoid Arthritis
Posted 29 January 2013 - 06:00 AM
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Posted 29 January 2013 - 06:31 AM
Posted 29 January 2013 - 07:59 AM
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.
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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
Posted 29 January 2013 - 08:07 AM
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.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Posted 29 January 2013 - 11:51 AM
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.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
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
Celiac.com - Celiac Disease Board Moderator
Posted 30 January 2013 - 06:48 AM
"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)
Posted 31 January 2013 - 01:30 PM
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
i'm down here in the well, looking back up at the hill
well, thank heavens i fell, i must look more like myself.
everyone is so kind, everyone looks like
a long lost friend of mine.... - 'up from under' - the wallflowers
have a nice day
Celiac.com - Celiac Disease Board Moderator
Posted 31 January 2013 - 02:36 PM
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 ?! ) and was so surprised by what he saw 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 ) 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. 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.
Posted 31 January 2013 - 10:47 PM
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!
Posted 01 February 2013 - 07:40 PM
hypoglycemic (diagnosed 1997 but symptomatic since grade school)
rheumatoid arthritis (diagnosed January 2005)
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
Posted 03 February 2013 - 09:47 AM
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