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7/7/09 1:17 P

I also want to point out that just because you have symptoms when you eat gluten, does not mean you are celiac.

You could just have a gluten intolerance.

current weight: 107.0

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Posts: 5,937
7/6/09 11:56 A

Thanks for the support! I'm really convinced I have to do this. I've been on various meds (Vioxx, Celebrex, etc., and OTCs as well), but they don't seem to have much effect on the joints, etc. I've noticed that weather has some effect, but that may just be a coincidence that has kept me from admitting the real problems. 8-) Linda C

current weight: 166.0

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Posts: 106
7/6/09 11:17 A

Linda;
I think you will discover if you stay true to your new life style (that's what it really is you know), your joint pain will either disappear altogether or improve dramatically. It will also come back with a vengeance should you stray.

Also, take a vitamin D supplement, just make sure it is gluten free..... Dot can address this better than I can.


Norma

Posts: 5,937
7/6/09 10:49 A

I'm amazed too at how dumb I've been. Even if it only results in weight loss, and I still have osteoarthritis, it'll be definitely worth it. Stay on me! 8-) Linda C

current weight: 166.0

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Posts: 106
7/6/09 8:16 A

Linda:
Since Celiac's have a wide variety of symptoms to say if you eat gluten you will have instant "diarrhea" is not accurate.
My symptoms are gut ache within 15 minutes, a little longer now that I have been gluten free going on 3 years, (boy how time flies). I get joint aches after a day or two, and I have noticed I get brown spots down my back several weeks later, that are similar to dry patches. Before going gluten free my entire head was covered with these patches and were moving down the side of my face. I was losing so much hair, my husband marveled that I had any hair left at all after he cleaned the shower drain.
Remember your symptoms are as unique as the disease itself. Personally, if removing gluten from your diet makes you feel better, why you won't do it is beyond me. It is easier then it was 10 years ago, and most Grocery stores are carrying GF food, it is also a healthier life style if you cut out all those carb's and pre packed foods that contain words you can't even pronounce. We also save a lot of money since we have cut out going out to eat three times a week.

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7/5/09 9:41 P

Linda-
I am very interested that our symptoms are so alike. Are you GF now? I hope you can get some relief because I know how hard it is. Getting rid of gluten really made an enormous difference in my life. I was surprised. I never dreamed that was a problem for me until I started feeling so much better. Keep in touch!

Carol

Posts: 5,937
7/5/09 9:07 P

OMG, you're describing me right now--except even sleeping on my back, with a pillow under my legs, isn't working anymore. I can get some relief in my recliner, but that seems like a lousy way to spend the rest of my life. 8-) Linda C

current weight: 166.0

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135

Posts: 1,913
7/5/09 3:55 P

Linda and all-
My symptoms are different. I can tell if I've been glutenized because I feel achy and sore. I was never tested. I stopped eating gluten almost 2 years ago. I have noted a big improvement in muscle soreness and joint pain. I had gotten to the point where I couldn't lay on my left or right side in bed, so spent months sleeping on my back out of necessity. Then my hips hurt so badly that I couldn't walk around the block. After eliminating gluten completely (is there another way???), I got better and better. Now I feel great most of the time.

Carol

Posts: 5,937
7/3/09 6:46 P

I haven't been tested yet, but because of earlier allergy testing for various foods, I'm thinking at the least GF would be good for me. I'm planning to get tested, but haven't spoken to my doctor yet.

I was talking to a friend of mine, and she said if I'm positive I'd know it--because eating gluten causes "instant diahrea," etc.

Now, I don't want to embarrass anybody, and you can email me privately if you wish, but I'd appreciate some "case histories" of how you felt, what you experienced, etc., before you got yourself GF.

Linda C

current weight: 166.0

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Posts: 10,003
7/3/09 1:55 P

How've you all done on follow-up tTG or other antibody testing? If your goal is to have a negative reading and it's not, why do you think that is, ie cross-contamination or do you occasionally indulge in gluten? Is this even a goal for you? Do you think the numbers "feel" accurate?

My diagnosis tTG was 19. My 6-month and 2-yr follow up the tTG was less than 3 (can't find my 1-yr at the moment, but I'm sure it was the same as the 2-yr).

(tTG reference range:
neg: less than 5
equivocal: 5-8
positive: over 8)

At dx, my Gliadin Antibody (IGA) was 50, at the 6-month it was 5, and they didn't do the test at my 2-yr (don't know why as it was supposed to be the same "comprehensive celiac panel", but many of the tests said "testing not required".

(Gliadin Antibody (IGA) reference range:
negative: under 11
equivocal: 11-17
positive: over 17)

My IGA serum was 207, 212, then 198. (Ref range: 81-463).

If you got tested, do you always ask for copies of the labwork (recommended!)? If you got tested, did they do the "comprehensive" celiac panel so you know if you're IGA deficient so the test is accurate?

I finally got my dad to test, but they only did a tTG and he could have been IGA deficient, so the test was inaccurate and a waste of time - booo.

Just wonderin' ...


Edited by: DOTSLADY at: 7/4/2009 (14:01)

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