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Celiac and Arthritis-like Symptoms Celiac and Arthritis-like Symptoms

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  #1  
Unread 12-06-2004, 07:11 AM
Celiac and Arthritis-like Symptoms

Hi, all - I just wanted to mention that an autoimmune disease called Celiac is often responsible for a lot of joint/arthritis type pain. Celiacs have gluten intolerance and anytime they eat a food with gluten in it (found in wheat, rye, barley, and oats - actually, oats are sometimes thought to be ok on their own, but due to cross-contamination, most doctors say not to eat them), it causes and autoimmune reaction in your small intestines that causes damage to your villi. You then cannot absorb nutrients properly and can become malnourished, can get osteoporosis and all sorts of other difficulties. It often causes arthritis-type pains that can often resolve (or get a lot better) once you go on a gluten-free diet. There is blood work that can be done to check for it, but you must be eating gluten at the time of the test or it will not be accurate. The "gold standard" diagnosis is to have a small intestine biopsy to check for villi damage. I was diagnosed with Chronic Fatigue/Epstein-Barr virus about 18 years ago, then about 9 years ago they thought I had Lupus due to the bad joint pain, but my Lupus work-up was negative, so they decided it was a Chronic Fatigue relapse. Now, in 2004, after all sorts of problems in 2003, an endocrinologist did blood work for Celiac, it was positive and I had the biopsy and my villi were damaged. Now I'm on a gluten-free diet and have seen some improvement, but am not yet where I'd like to be. Celiac is associated with other autoimmune disorders also - Sjorgrens is one of the ones they have linked it with. Just thought I'd let you all know about it in case it could help with anyones joint pains. Good luck everyone!
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  #2  
Unread 12-06-2004, 09:21 AM
Celiac and Arthritis-like Symptoms

Lisa,

Thanks for sharing that info! I have a friend locally who has a couple of children with Celiac and last I heard she was being tested. She is a local spokesperson for the disease.
  #3  
Unread 12-07-2004, 07:29 AM
Celiac and Arthritis-like Symptoms

Michelle -

I see you are from Texas - the Dallas/Fort Worth support group has a great website with lots of info. Theirs was the first site I found when I was diagnosed and I printed out lots of their info. It must be really hard that your friend's children have Celiac. It's hard enough as an adult, but kids have so much more pressure on them to eat what everyone else is having and stuff like that. I hope your friend tests negative. So far, my children were both negative and I'm hoping and praying they'll never trigger it!! The weirdest thing with me is that all my gastro issues and my female issues seemed to be so tied up together but I could never get my doctors to see any connection. Now that I have been diagnosed with Celiac, that is the connection. They say as many as 1 in 133 people have it and don't know it so I bet there are a lot of hystersisters out here that also have gluten intolerance or Celiac! Thanks for writing
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  #4  
Unread 12-07-2004, 11:22 AM
Celiac and Arthritis-like Symptoms

Actually, it takes my friend a very long time to shop for groceries and eating out is a real hassle. Her kids are young, so like those with juvenile diabetes, its all they know. For them, what they eat has medical consequences, they understand that and they are good about it. The whole family eats the gluten free diet, so they are all in it together.

I am glad to hear that a connection was finally made for you. I understand that this disease is mostly found in the fairest skinned anglos. Is that the information that you are finding, too?
  #5  
Unread 12-07-2004, 11:58 AM
Celiac and Arthritis-like Symptoms

Michelle -

That's great that your friends children are good with the diet. Mine are 11 and almost 7 and if they had been positive, I know it would have been really difficult to get them to change easily. I can sympathize with her about shopping and eating out...I just don't eat out at all because I live in a small town and it is way too risky. Seems like the folks around here aren't too willing to check into their ingredients to help out.

I'm actually not finding the "fairest skinned Anglos" theory to be too accurate. My ancestors are Italian and I have dark hair and eyes. I suppose my skin is not dark like some Italians, but it's not super light either.
  #6  
Unread 12-07-2004, 12:46 PM
Hi

Hi Lisa - was interested in your post about celiac. I have never been official diagnosed with it but have IBS which I have had for about 2-3 years now and it was getting worse - was going to the toilet about 7 times a day (on a good day) and was losing weight.

Had a colonoscopy, gastroscopy and nothing abnormal showed up for celiac but I have since been seeing a herbalist for about 3 months, who has put me on some herbal treatments and I have been off gluten for IBS for the whole time.

Took a while getting used to as gluten is actually found in so many products - gotta read the labels. I feel about 80% better now and am quite happy not to include gluten in my diet in the future.

A few people thought I may have celiac but nothing has shown up -

I think there are many people out there who are gluten intolerant to different degrees and don't even realise.

Take care
Sharon
  #7  
Unread 12-07-2004, 02:37 PM
Celiac and Arthritis-like Symptoms

Sharon -

Hi! I see you are from Australia...I haven't heard the term gastroscopy before and am wondering if that is the same as an endoscopy here. Endoscopy is when they put the tube down your throat and then take samples from your small intestine to see if your villi is damaged. I'm guessing that is what you had and it was negative. From what I have learned about this whole thing, you are absolutely right and there are many different levels of gluten intolerance that still cause symptoms but don't cause enough damage to have the tests be positive. In fact, in my case, while some of my blood work was positive, I had some important Celiac tests that were negative so that is why they did the biopsy to make sure it was not a false positive. The biopsy did show damage so I was labeled as Celiac. There is a doctor in Texas who does stool testing to test for gluten intolerance because he believes it is better to diagnose it when it is just an intolerance before there is villi damage. Of course, there is controversy over the accuracy of his testing, but many people have been helped by his testing.

It is good that you were able to figure this out and that you are feeling much better on the diet. I'm doing ok, but have a ways to go before I am all healed up. I must say, though, it is nice to not have to go to the bathroom every time I eat!!! Sounds like you had to deal with that quite a bit. The National Institute of Health had a big conference on Celiac this past summer, so that is, thankfully, bringing more attention to it. One of the things that was mentioned is that everyone with IBS should be screened for Celiac also. Of course, as in your situation, screening may not necessarily diagnose Celiac, so you'd be kind of in limbo. If this doctor who does the stool testing would share his studies with other doctors and they could prove his theory of testing for gluten intolerance in stool samples, then that would be a great step forward.

There was also a food labeling law passed recently where manufacturers will be required to declare if any of the eight major allergens are in the product. That will help us a lot regarding wheat, but we'll still have to be on the lookout for hidden rye, barley, and oats.

Thanks for writing! I'm very interested to hear from others with similar issues.
  #8  
Unread 03-07-2005, 06:04 PM
Celiac and Arthritis-like Symptoms

G'day all,

I was just surfing thru this info as I had a DEXA scan on jan 18th & finally got my results from my dr .
I am 35yrs of age 5' 10" 90kg anglo saxon (white mother born in the UK father 5th gen white Aussie goes back to UK) & have just been diagnosed with 'severe' osteoporosis & to cap it of I have oseophagitis reflux disease diagnosed via gastroscopy...
I am now taking evista daily, caltrate with vitamin d suplement, & also medication for my reflux issues.....
I had a radical hysterectomy aug 4th 2004 due to severe endo, adeno, etc & have been cruising along quiet happily since then
Except I have always had 'joint pains' & in my 20s fractured my ribs, then a shoulder, my shoulder now gives me 'hell' from aches everyday....especially at night f I sleep on that side...
so I wanted to see if there were more ladies my age with 'severe' osteoporosis...as it is seems unusual here in Australia to suffer from that at 35...
my dr showed me the results & in the colored chart I could see I was a 'blip' just about on the bottom of the graph & that the scan of my pelvis actually showed big areas of bone missing....it scared the hell out of me...tomorrow I have to see a dietician at the local hospital to sort out what I can & can't eat due to my oseophagitis reflux & the need for higher uptake of calcium.....having said all that I am a signwriter....& I own & live on a dairy farm....dairy farmers shouldn't suffer calcium deficiency!!!

I noticed that we use different terms here in Australia Gastroscopy....long tube with camera down the throat

Colonoscopy....long tube with camera via the rectum.....
  #9  
Unread 03-08-2005, 08:08 PM
Celiac and Arthritis-like Symptoms

That is amazing that your osteoporosis is so bad and you are so young - how awful!! Have you ever been tested for Celiac? One of the red flags for it is osteoporosis because when your small intestine is not working properly, it affects how well your body absorbs vitamins and minerals and it can lead to bone loss. There is a list of screening tests that a person is supposed to have done once diagnosed with Celiac and the DEXA scan is one of them. In fact, this is a quote from a well-respected Dr. who treats lots of Celiacs, "Bone density tests (DEXA) for everyone. Sixty to 80% of adults at time of CD diagnosis have an abnormal density, indicating some bone loss or Osteoporosis. Get a bone density test to use as a baseline for further tests and to determine about calcium & vitamin D replacement or whether they are candidates for other medications to prevent continued bone loss." If you have time, I would am very interested to hear how your appointment with the dietician went and would like to know if anyone has every suggested Celiac/gluten intolerance to you. Take care!
  #10  
Unread 03-08-2005, 08:28 PM
Celiac and Arthritis-like Symptoms

Vegemite -

Another article I just read on my Celiac site -

HealthDay News) -- People with osteoporosis, the bone-weakening condition, may also have celiac disease and should be screened for that illness, too, a new study recommends.

A review of 266 people being treated for osteoporosis found that nine of them had celiac disease, an intestinal disorder caused by intolerance to gluten found in wheat, rye and other grains. Just one of 574 people without the bone disease also suffered from celiac disease, the study found.

"Our results suggest that as many as 3 to 4 percent of patients who have osteoporosis have the bone condition as a consequence of having celiac disease," said Dr. William F. Stenson, a professor of medicine at Washington University School of Medicine in St. Louis, who led the study.

The finding appears in the Feb. 28 issue of the Archives of Internal Medicine (news - web sites).

Celiac disease causes an immune reaction to gluten that interferes with the ability of the intestine to absorb nutrients, including the calcium and vitamin D that are essential to the health of bones. A gluten-free diet improved bone density as well as gastrointestinal symptoms for people with celiac disease, the researchers reported.

"We believe that the diet allowed the intestines to heal and that permitted normal absorption of calcium and vitamin D to reverse bone loss," Stenson said.

While a severe case of celiac disease produces obvious symptoms such as weight loss and diarrhea, mild cases often go undiagnosed because they cause more subtle problems, such as iron deficiency anemia, the researchers said.

"One of our conclusions is that incidence of celiac disease in patients with osteoporosis is high enough to justify screening for everybody with osteoporosis," Stenson said. "The idea is that if a patient has osteoporosis as a consequence of celiac disease, the most direct way to correct their bone loss would be to put them on a gluten-free diet."

The Washington University report ties in with a Finnish study, released last year, which found that one in every 99 children tested in a pilot study had undetected celiac disease, and a study done two years ago at the University of Maryland that found an incidence of one in 133 children. But both the Finnish and Maryland researchers said the case for mass screening was still unproven.

"Screening is not something I would recommend for any group based on the Stenson [Washington University] study, viewed with other data," said Dr. Alan L. Buchman, associate professor of medicine at the Northwestern University Feinberg School of Medicine, who wrote an accompanying editorial in the journal. "But it is an issue we can't ignore."

Costs linked to a generalized screening is one important consideration, he said. "The cost to prevent a single fracture in a patient with celiac disease and osteoporosis would be $43,000," Buchman wrote.

"What probably needs to be done is a study that has a large number of subjects, a cross-section across the nation to determine the incidence," Buchman said. Such a study "would take a long time to do and cost a lot of money," he added, but "if we screened everybody that would cost billions of dollars."
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