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Celiac Disease/gluten Sensitivity Vs. Lupus


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#1 Chap

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Posted 09 February 2006 - 02:34 AM

Hi,

I saw my PCP in November 2005, complaining of debilitating fatigue. He ran blood test (only a partial) for Lupus or other connective tissue disorder. He called me two days later and said that he thinks he's found the reason for my extreme fatigue. My test results were as follows:

1. ANA (Anti-Nuclear Anti-Bodies) 1:160 - the norm is 1:40

2. SED/ESR Rate 45 - the norm is 1 - 15 - He says that it indicates inflammation in my body, and the presence of a chronic illness.

3. The CBC (Complete Blood Count) for all red blood cell indices were either high or low. My Total Red Blood Cell Count was low. However, though all the counts were either high/low, they were just slightly out of the limits. The only White Blood Cell Count out of limits was a high EOS. The rest of the white blood cell indices were normal, including the Total White Blood Cell Count. He Positively diagnosed me with Lupus, or some other connective tissue disorder. He then prescribed prednisone for the inflammation. He then referred me to a Rheumatologist for treatment.

HOWEVER, I had a very thorough interview and Examination by the Rheumatologist. She was very attentive, alert, and seemed very knowledgeable. At the end of the exam/interview, she said, "I don't think you have Lupus at all." "I think you have a Wheat Allergy, called Celiac Disease." I was surprised at her preliminary diagnosis, but had run out of time and did not get to ask her why Celiac Disease instead of Lupus. However, she stated that she would run a FULL Lupus Panel just to be safe, and she ran tests for TgG, TgA, and the Anti-Glut (can't spell it). She also order blood work for my liver, kidneys, etc., though I had no complaints.

I'll get test results in three weeks from today. However, out of curiousity, I was wondering if anyone can enlighten me as to why she seemed so positive about Celiac vs. Lupus:

Was it the High EOS? (Indicates a response to Allergies - I looked it up)

Was it because I used to get rashes on my elbows, and have them on my feet now?

Was it the white outline of my gums? (I do need dental work, which I'll be getting in March).

Was it because the fatigue started 30 years ago, and got slowly worst, to be point of being debilitating 30 years later?

Just curious. I'll get the test results in three weeks anyway. Just wondering if anyone else's physicians had commented on any of the above when being diagnosed, or while being in the process of being diagnosed. I have no GI symptoms whatsoever.
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#2 nettiebeads

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Posted 09 February 2006 - 04:17 AM

I think you have a very good Rhuemy. Celiac is called the great imitator of diseases. It sounds like the supposed lupus hasn't acted or progressed like it normally should. And also, Celiac is closely identified with other conective diseases ie RA. People with untreated celiac have malabsorption issues and that is what leads to many misdiagnosis - the body isn't getting the nutrients it needs to be totally healthy and so manifests the lack of proper nutrition in many many ways. So if indeed you have celiac (and I wouldn't be surprised) the gluten-free diet is the only answer. No drugs, prescriptions, or other things are necessary. But what is great is that the body will begin to heal itself as soon as the offending item (gluten) is eliminated. I'm sure you wouldn't mind an end to the crushing, debilitating fatigue you've experienced for most of your life.
Keep us posted, please!
Annette
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#3 Nancym

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Posted 09 February 2006 - 08:47 AM

Celiac is also linked to autoimmune diseases like Lupus. Sometimes getting off the foods you're intolerant to can make those diseases go into remission. You are lucky to have a good rheumy!
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#4 Chap

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Posted 09 February 2006 - 07:37 PM

Thanks for the replies, (Nancy and Nettie). Especially about my having found a very good Rheumatologist. That was my feeling also. Even if she isn't able to pinpoint my problem, at least I feel I've gotten a good shot at it by someone who tried their best, and is extremely knowledgeable in what she does. I've seen at least 20 - 30 docs in my lifetime for annual physicals, minor illnesses, etc., and I always felt that their minds were partially on me, and partially on the line of other patients they are scheduled to see, or have seen. With this lady, I felt that there was no one else in the room other than her and I, her attention was completely on me and my issue, and I could see the "wheels turning in her head." Just my gut feeling. Anyway, I'll get more information at my next appointment in early March.
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#5 nettiebeads

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Posted 10 February 2006 - 03:41 AM

Have you tried the gluten-free diet? Has your RA dr. ordered the celiac blood panel? Just because you don't have the GI symptoms of celiac disease doesn't mean that damage hasn't been done. There are 200 symptoms of celiac and then there are those who are asymptomatic. If the bloodwork has been done, or if it isn't going to be done, why don't you try the gluten-free diet for 2 weeks and see how you feel - if there is any lessening of the fatigue and other lupus symptoms. It wouldn't hurt, and could actually help. Just a thought.
Annette
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#6 Nancym

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Posted 10 February 2006 - 09:53 AM

I'm about to see a rheumatologist too, first time for me. I was just dx'd with gluten sensitivity and I autoimmune issues in my history. I've been on a diet that is similar to the Paleo diet and my symptoms have been really good for awhile. I have been suspecting Lupus for myself too. But... we shall see.
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#7 Chap

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Posted 11 February 2006 - 12:19 AM

Thanks for the replies, (Nancy and Nettie). Especially about my having found a very good Rheumatologist. That was my feeling also. Even if she isn't able to pinpoint my problem, at least I feel I've gotten a good shot at it by someone who tried their best, and is extremely knowledgeable in what she does. I've seen at least 20 - 30 docs in my lifetime for annual physicals, minor illnesses, etc., and I always felt that their minds were partially on me, and partially on the line of other patients they are scheduled to see, or have seen. With this lady, I felt that there was no one else in the room other than her and I, her attention was completely on me and my issue, and I could see the "wheels turning in her head." Just my gut feeling. Anyway, I'll get more information at my next appointment in early March.



Hi Nettie;

Yes, my doc (Rheumy) has ordered the three tests that I think is considered the "Celiac Panel" - The IgG, IgA, and the Anti-emdomyial, I think it's called. The results will be back in three weeks. Oh, and she told me not to change my diet, or anything else until I see her in three weeks. I wondered why, did a bit of research, and I found that if the blood serology is positive, which makes a diagnosis about 90 percent for Celiac, then a biopsy (Endoscopy) is then done to firm up the diagnosis to 100 percent. If a person goes gluden-free before the biopsy, then it could affect the results of the biopsy. She didn't explain this to me, but I was able to figure this out from reading about Celiac disease. However, it has been hard to keep eating wheat, rye, barley, and oats for the past three weeks, if this is in fact the reason for my "unwellness". I've read that a lot of people simply can't stand not knowing, and do try a gluten-free diet between the positive bloodwork and the biopsy, thereby possibly causing the biopsy not to be reliable. So, I'm just going to "tough it out" until the testing is done. I want to be as sure as possible that I do, or do not have Celiac. Oh, and I was reading today that it only takes 0.1 gram of gluden to cause a reaction in a person with Celiac - that's 1/48th of one slice of bread! Amazing.
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