• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Chap

Celiac Disease/gluten Sensitivity Vs. Lupus

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,917
    • Total Posts
      943,500
  • Member Statistics

    • Total Members
      67,107
    • Most Online
      3,093

    Newest Member
    Mary Scullion
    Joined
  • Popular Now

  • Topics

  • Posts

    • I just saw your profile says thalassemia. My doc blames part of the microcytic anemia on thalassemia trait even though all my thalassemia gene tests have come back negative (and I don't have the right ethnic background). In a way I am hoping it is a FODMAP (carbohydrate) sensitivity instead of a gluten allergy because at least with the FODMAP you just have to stay low FODMAP and don't have to worry about crumbs and gluten cross-contamination like with celiac. I will check back in in 6 months once I see whether there are specific foods I can't eat or if it really does come down to gluten  Thanks for your support!!
    • Good for you for trying to manage your health.  My only suggestion would be to find another doctor.  Obviously, he does not even follow standard recommendations for screening.  I would worry that he overlooks other things too.  It never hurts to get a second opinion.  Second opinions have saved my family from unwanted surgeries and incorrect treatment.   The IgA (Immunoglobulin A) Test, in the case of celiac disease testing,  is a control test.  If he had ordered it, you would have known if the results are valid or not.  Now you are left in diagnostic Limboland.  Again, my TTG was negative it has never been positive even in follow-up testing.   You can go gluten free for life.  My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist).  But he will be the first to tell you that I get way more support from family, friends and medical. I wish you well!  
    • Okay so I had a peanut butter milkshake from steak n shake last night. I'm nearly positive that every thing else I've had recently has been gluten free. I have been feeling like my stomach is acting up a bit lately, but after this milkshake it is so much more intense. I considered maybe I'm sensitive to dairy too, but in the last few days  I've had plenty of dairy that didn't make me react  like this. The steak n shake website didn't list any real specifics on ingredients for milkshakes. I read in other forums that some shakes use a malt mix or syrup ( which I didn't see mentioned on the site), but it is corn based. I called the my local steak n shake and the guy said he is "pretty sure" it's corn based.  I called the customer service line and they couldn't tell me if it was gluten free or not. I found ONE listing on a website that said all shakes were gluten free expect peanut butter and one other flavor. I know this seems like a lot for one shake, but I'm so tired of not knowing what makes me sick. Has anyone else had an experience with this or has anymore knowledge about steak and shakes products?
    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
  • Upcoming Events