I've had abdominal pains for the last 20 years. I have had discoid lupus for 31 years (I'm 37). I've had several symptoms of Gluten Intolerance and not known it. Have seen my GP for 2 years with blood work every 3 months, the latest round has been checking the beta carotine levels (even the lab tech had to look it up). I finally see a chiropractic neurologist for some unrelated pain and he thought the rash on my arms was similar to a gluten rash, not lupus. He ordered the celiac panel. One test came back positive. The Gliadin AB IGG was a 31 (greater than 30 is a moderate to strong positive). I saw my GP today as recommended by the chiropractor. My GP thought he had ordered the panel (until I told him no) and he said the result was minimal and unlikely a gluten intolerence but if I wanted he would refer me to a gastro (I saw him last year for a colonoscopy, endoscopy, and small bowel series, diagnosis: IBS). Also, my GP said that since I didn't have water blisters on the rash, it couldn't be related to gluten but he could refer me to a dermatologist. (oh, I don't have the weight loss by any stretch of the imagination, if anything, it's a major gain)
I don't know what to think. I'm tired of being at my GP's mercy. I know there's something wrong (more than lupus). I've been trying to eat gluten-free but after seeing my GP, I had Pizza Hut breadsticks! (wrong choice but it was good). Now my arms are starting to itch.
Does anybody have any advice for me? I don't really care to go back to the GI Dr. He was nice enough but I can't say I'm overly confident about seeing him and I don't know that I trust seeing a derm that my GP recommends or not.
Please help!
Natalie
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4 replies to this topic
#2
Guest_jhmom_*
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Posted 30 March 2004 - 07:03 PM
Hi Natalie, welcome 
I was also told I had IBS for over a year, my GI doc performed every test known to man and they all came back negative, except the endoscopy which showed "patchy inflammation" but it still was not enough for him to accept Celiac as my diagnosis. I finally ordered a stool panel test from enterolab.com and it came back positive and I immediately started a gluten-free diet and could tell a difference within a couple of days, my abdominal pain was going away!
I do not know much about DH but I am sure it could be mistaken for the lupus rash. If I were you since one of your test results was positive you could always try the gluten-free diet to see if your abdominal pain improves as well as the rash. OR you may be able to find another GI doc which specializes in Celiac but that is only if you want to continue consuming gluten for additional test he/she may want to perform but if not try the diet!
Ironically my doctor suspects I have Lupus too. So far 2 of my blood test have come back positive and I have 6 of the symptoms from the criteria list?!?!? All this related, could be I guess, who knows!!!!!!
I hope you get answers soon and begin to feel better!
I was also told I had IBS for over a year, my GI doc performed every test known to man and they all came back negative, except the endoscopy which showed "patchy inflammation" but it still was not enough for him to accept Celiac as my diagnosis. I finally ordered a stool panel test from enterolab.com and it came back positive and I immediately started a gluten-free diet and could tell a difference within a couple of days, my abdominal pain was going away!
I do not know much about DH but I am sure it could be mistaken for the lupus rash. If I were you since one of your test results was positive you could always try the gluten-free diet to see if your abdominal pain improves as well as the rash. OR you may be able to find another GI doc which specializes in Celiac but that is only if you want to continue consuming gluten for additional test he/she may want to perform but if not try the diet!
Ironically my doctor suspects I have Lupus too. So far 2 of my blood test have come back positive and I have 6 of the symptoms from the criteria list?!?!? All this related, could be I guess, who knows!!!!!!
I hope you get answers soon and begin to feel better!
#3
travelthomas
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Posted 31 March 2004 - 06:20 PM
Natalie,
I would suggest the gluten free diet before wasting too much time and money on doctors. A year ago people suggested that I get tested for parasites because of all my travels to third world countries. This winter, while down in Mexico, I had my blood and stools tested in a lab run by Italians. Because I am so careful about what I eat I knew what the results would be. Negative for any parasites. In Mexico those test cost me $42 U.S.
A gluten free diet is a healthy lifestyle anyway. On a brown rice, chicken, fish, and vegetable diet, it is really hard to put on weight. Just look at the billions of people who live on such a diet. Then look at the millions of people who live on a gluten diet. Who do you think looks healthier?
Good luck!
I would suggest the gluten free diet before wasting too much time and money on doctors. A year ago people suggested that I get tested for parasites because of all my travels to third world countries. This winter, while down in Mexico, I had my blood and stools tested in a lab run by Italians. Because I am so careful about what I eat I knew what the results would be. Negative for any parasites. In Mexico those test cost me $42 U.S.
A gluten free diet is a healthy lifestyle anyway. On a brown rice, chicken, fish, and vegetable diet, it is really hard to put on weight. Just look at the billions of people who live on such a diet. Then look at the millions of people who live on a gluten diet. Who do you think looks healthier?
Good luck!
#4
lauradawn
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Posted 01 April 2004 - 01:28 PM
the IGG test can signify other things too, not just Celiac. I don't know much about DH but I agree form my understandding it can be very similar to lupus, but for different reasons. IT will be interesting to see what they find out, but here's another suggestion. If your rash is acutally DH, a biopsy of the rash will diagnose you Celiac. You wouldn't have to see a GI for the dx. If you have Dh you have Celiac.
#5
nhite
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Posted 06 April 2004 - 10:53 AM
Just an update to last week's message. I went back on a gluten diet after 3 days off and I have an unbelievable rash now. I have an appointment with an internist on this coming Friday so I kind of want to keep the rash going a bit so he can see it. I did have an allergist appointment yesterday and she agreed that it looks like gluten and did a biopsy right away! I am so excited that I'm not imagining this and that there's another Dr. who agrees with me. Depending on what the internist says, I will be drafting a letter to my GP explaining why I'm dumping him and probably going to see the other physician in the office!
Natalie
Natalie
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