Joint Pain (Rheumatoid Type) As The Main Symptom?

[lizdehart]

Or MAJOR symptom?

I am 35 years old. Since my early 20s I have suffered from IBD, depression. Difficulty getting pregnant at 25, carpal tunnel after 1st pregnancy at 27, brian fog after 2nd pregnancy at 30, autoimmune thyroiditis at age 32, elevated pancreatic enzymes at age 33.

About 2 months ago I started having AWFUL joint pain in my hands. I went off of gluten, soys, eggs and dairy (modified hypoallergenic diet) and had almost immediate relief. I have previously been off of soy after my thyroid problem and have been off eggs and dairy before during a vegan period which would make gluten the likely culprit.

I have been off gluten for almost 3 weeks, had some bread and noodles yesterday, and have asked my doc to check antibodies. Should I gluten load for the test? Would the lest be less effective if I have been off gluten? I am paying for testing out of my own pocket and would like to know if I am celiac or just intolerant (is there a difference?)

Also how many of you had people think you were a hypochondriac due to the array of symptoms? Drives me crazy.

My aunt is an RN that works with allergists/immunologists who told her that food does not cause R.A.

Thank you in advance.

[lizdehart]

Also, my father died of pancreatic cancer when he was pretty young (47). There have been recent advances in the studies of leaky gut and GI carcinomas - genetic link?

[Dixiebell]

Welcome lizdehart!

Yes, you need to be eating a regular gluten filled diet for several weeks before testing to get the best possible results.

I also had the hand pain and it possibly could have been that my vit D was extremely low but since going gluten free and taking my vitamins, I feel like a new person. My Dr. told me all my pains and depression were anxiety.

Some testing you should do is vitamin and mineral levels to see if they are low.

[lizdehart]

Welcome lizdehart!

Yes, you need to be eating a regular gluten filled diet for several weeks before testing to get the best possible results.

I also had the hand pain and it possibly could have been that my vit D was extremely low but since going gluten free and taking my vitamins, I feel like a new person. My Dr. told me all my pains and depression were anxiety.

Some testing you should do is vitamin and mineral levels to see if they are low.

Thank you for the welcome. I have supplements VIT D and calcium after going off cow's milk last year.

I had a physical last fall and all labs, including vitamin levels, were normal.

[mushroom]

Celiac vs. gluten intolerance. Well, all celiacs are gluten intolerant by definition. Others are gluten intolerant but don't meet the criteria for the celiac diagnosis (specific blood antibodies, and damage to the small intestine). It used to be thought that if you did not have celiac you were fine and could go forth and eat gluten. We now know that that is not the case. Those with gluten intolerance (not diagnosable as celiac) can have problems just as serious with consequences as deleterious as the diagnosed celiacs. So from a dietary point of view it does not make any difference - the cure (avoidance of gluten) is the same. Some gluten intolerant people do not get any intestinal symptoms; many do get neurological symptoms like gluten ataxia, peripheral neuropathy, MS type symptoms,; many get joint pain; thyroid problems are common. Practically any autoimmune disease can have a link with celiac disease. My rheumatologist does not know this and insists that there is no connection whatsoever between RA and celiac - told me he had never treated a diagnosed celiac. I told him 97% of celiacs are undiagnosed because no one thinks to test them and asked if he had ever tested any of his patients. And then there are the silent celiacs who show no outward symptoms for years until they are suddenly hit by an autoimmune disease or, if they are fortunate, the disease is picked up by a random screening test.

Now, for many people the official celiac diagnosis is a very important piece of paper while for others feeling better by not eating gluten is the main goal, because you do not need an official diagnosis or a doctor's permission to go gluten free. If the piece of paper is important to you and you have been gluten free for three weeks, you will need to resume eating gluten for a good 8 weeks, the equivalent of 3-4 slices of bread a day, or you will be wasting your money on the testing - the chances of getting a positive result would be really slim because the antibodies will have retreated and some healing will already have taken place in the gut if there were damage there.

You have many of the classic gluten intolerance symptoms and are certainly not alone in being told you are a hypochondriac, that they are all in your head. We know better.

[chasbari]

I was first diagnosed with rheumatoid arthritis. Hands, feet, back, everything as it progressed. Very high titers for RA factor and I was nearly immobile by the time we went in the direction of a diagnosis for celiac. Once I went paleo for my gluten free diet my RA started to clear up.. profoundly and rapidly. My rheumatologist refuses to believe that my RA was in any way shape or form connected to my celiac and wanted me on heavy duty drugs. Said I probably didn't even have celiac and wanted to treat me for IBS instead. I went from gel times of two to three hours in the mornings (or any time I sat down for more than a quarter hour) to mostly no gel time on a daily basis. My hand joints have seemingly stabilized and even on bad days nothing locks up anymore.

I have my own opinions about doing a gluten challenge for purposes of a blood test. I had already been gluten-free for almost 6 weeks when I was tested so I was negative for antibodies but there was no way you would have gotten me to touch gluten again. My doctor went ahead and, based on anecdotal evidence and the overwhelmingly positive response to the diet I had already shown, did the scope anyway. Severe intestinal damage. Over two years later and I still have damage consistent with celiac on my latest scope and that with only one accidental glutening that we know of over the last two years. I find it hard to believe that someone would heal so fast that damage wouldn't show if they sample from enough spots in the small intestine. Awfully lucky if they do.

[SaraKat]

Hello- I am 35 and my main symptom was pain in my left ribcage that started about 1.5 years ago. I don't have RA though, but a rheumatologist did diagnose my celiac this past September. Yes, I thought I was a hypochondriac, I was going from Dr to Dr about the left side rib pain for a year before finally getting the celiac diagnosis. I have no GI issues, just this left pain. I do take synthroid for hypothyroid, but no autoimmune thyroid.

When is your test? I don't think being off gluten for just 3 weeks would make a huge difference, but since you ate bread yesterday I would probably do a few more days of gluten and get tested next week.

Good Luck!

[lizdehart]

I did 3 1/2 days of gluten. Had the test yesterday. This is the result:

Tissue Transglutaminase Ab, IgA. 6

If Tissue Transglutaminase Ab, IgA is negative, the

Endomysial Ab, IgA Titer by IFA is not performed.

INTERPRETIVE DATA: Tissue Transglutaminase Antibody (tTG), IgA

19 Units or less ........... Negative

20-30 Units ................ Weak Positive

31 Units or greater ........ Moderate to Strong Positive