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Blood Test Results

nhite

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nhite Newbie
nhite
Posted

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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Guest jhmom
Guest jhmom
Posted

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!

travelthomas Apprentice
travelthomas
Posted

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)

lauradawn Explorer
lauradawn
Posted

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.

nhite Newbie
nhite
Posted
  • Author

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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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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