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Blood Test Results
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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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Hi Natalie, welcome :D

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!

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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. :D

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? :lol:

Good luck! B)

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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.

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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

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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