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Celiac And Lupus Relationship And Possible Mimickers
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Hi everyone, I wanted to tell you all about an article that I came across as I was researching dsDNA and celiac correlation. When I had my testing done for celiac disease, my dsDNA was also detected which is a marker for SLE (Systemic Lupus Erythematosus) but my neurologist, family doctor and several other second opinions later, they all say I do not have lupus because of the low titer range being 1:10 and I never get the rashes nor joint pain association. I have had seizure type activity, photophobia, neuropathies, and weak muscles that I surely thought was lupus, however I never have had all of the criterion and things just didnt quite add up. I also tested positive for the deamidated gliadin peptide igG (DGP IgG) which indicates celiac disease.

In doing research I found an article wriiten about a woman, Margaret Romero, who was diagnosed with lupus nephritis, and she found out that she had the genes for gluten intolerance. Her story is pretty remarkable and I wanted to ask you guys if you have heard of her before and what you think about her story. I will attach a link but I am not sure what the rules are for posting for links, but here it is, I hope that you can read it and see her success. http://celiaccorner.com/celiac-gluten-free-blog/surviving-a-dual-diagnosis-of-lupus-and-gluten-sensitivity/

I also found this study for those with lupus like symptoms and even diagnosis which turned out to be gluten sensitivity. http://ard.bmj.com/content/63/11/1501.full I am not saying this is EVERY case because everyone is different. I think for learning and knowledge purposes it can be very informative. It also may offer some of us relief. I wonder if celiac really can be mistaken for lupus? Has this ever happened to anyone here? Thanks in advance and I really hope that it is okay that I am giving these links for others to read.

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Interesting links. I'm glad you posted them. :)

I suspect SLE could be a possibility for me, and I am waiting (and waiting) to see a rhuemy about it. I did not have a positive dsDNA, or any other antiautobodies that are normally screened for lupus. My only blood work was positive ANA titres (1:160) years ago but my recent one was considered negative (1:80). My SLE-like symptoms include arthritic joint pain that occurred on and off since my early 20's, ITP (thrombocytopenia), headaches, hair loss, fatigue, and a blush/rash over my cheeks and nose (but I also have some roseacea so it's hard to tell where that ends and the rash begins). I have a some neuropathy too but I think it's from a bad back.

So, I have some symptoms of SLE, and they actually got quite bad with a "flare-up" after I had been gluten-free for about 2 months, but now the symptoms are disappearing. I have less symptoms now than I did 9 months ago and I have no idea if it is just because this autoimmune problem (possible SLE) is waning or if it's because I have been gluten-free for 6 months or if it's because my hypothyroidism treatment is getting closer to optimal range. :huh:

It's possible that celiac disease is gave me Lupus like symptoms. I never experienced an immediate change in my SLE-like symptoms after consuming gluten except for my headaches; those seemed to happen a few hours after gluten. The arthitic like pain, face rash, and pain seem unrelated to gluten as far as I can tell. I know that my hair loss is related to gluten consumption because I started getting a lot of regrowth after eating gluten-free for a couple of months but then when I had an SLE like flare, it fell out again so it is linked to a couple of causes... Darn it... My problem is staying patient so I can give it enough time to be able to tell what is what! LOL

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    • Ugh!  So, you have early stages of celiac disease and that was after being gluten light?  It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage!  Time for a new GI.  You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current doctor about the reasons why he is hesitating.  He would rather you continue to become more ill or improve your health?   Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley!   I don't get it! 
    • Thanks for the comments. With Dr. Google, I have seen mast cell disorder pop up.  It seems like I need to eliminate some basics before heading in that direction. So, another question...is it possible that symptoms of celiac need time to "build up" over time? For instance,  I started reintroducing gluten and coffee last week to prepare for my GI appt.  However, nothing really seemed to happen except a little knee crankyness (which I can easily attribute to hiking).  Yet, yesterday I had a huge bagel at work, had itchy forearms, and then had two huge hives appear later.  Today, I had another bagel and in a few hours I had a few red fingers that were itchy and numb feeling in the tips.   I know histamine intolerance is a possibility, but wouldn't that show up as an extremely large hive with my allergy skin test? Also, I had to go into work today and yesterday. I'm wondering if that environment could contribute to the issue (I'm a high school teacher).  
    • Hi Fidel, The original poster hasn't been on the site for several years, so you may not get a response from them. But welcome to the forum!  
    • False positive or negative?  I was diagnosed with Coeliac and the more rare Dermatitis Herpetiforma.  I know that symptoms like youre describing could be a whole variety of conditions.  I have a friend who has ulcerative colitis whose symptoms are similar to what you are describing.  You could have ulcers, but keeping it real i have to say youre also describing opiate withdrawl.  So if youve been on pain killers prescibed or not that could be it also.  Best of luck
    • Hi Megan, Regarding dairy, celiac disease damages the villi that make the lactase enzyme that digests milk sugar (lactose).  So sometimes people can't digest dairy well when they first start the gluten-free diet.   Over time that may change as you heal.  The ability to digest dairy doesn't always come back, but it may. Throwing up can be caused by excess gas in the stomach.  That's pretty common when starting the diet.  Sugar and carbs will make it worse.  Udi's bagels are made of various flours so they are full of carbs.  Carbs are turned into sugar in the body and that feeds the bacteria, hence the gas. You could be reacting to various foods, so eliminating one problem food is not going to fix all the problems.  I think it would be more helpful to start by following the tips in my earlier post than to  try a full fledged elimination diet at this point.  Elimination diets can take a while to do. If you can stick to eating meats, vegetables, nuts for now that is a good thing.  No processed foods (like Udi's) or other baked goods.  This is probably the fastest way to get better and learn what is safe to eat.  Once you are feeling better for a few weeks then you can try adding in one new food a week and see how it goes.  The gluten-free diet is a lifetime commitment so you may as well start out right and take your time.  Whole foods are a good way to go at the beginning.  If you cook your own food you know what is in it.  That's important to know for us.  Avoiding any processed food with more than 3 ingredients is also good.  The fewer ingredients you are eating the simpler it is to figure out a problem. I wouldn't worry about the idea of the throwing up thing making you react to dairy.  Celiac is known to cause a problem with dairy intolerance.  
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