Lupus

[Guest jhmom]

I would like to know if any of you out there have been diagnosed with Lupus or think you may have it?

[Kathinsearch]

Lupus... back in 1999 it was thought that I had lupus... certain tests came back positive and I had been feeling like I was dying... exhausted, in pain, mentally unable to focus orremember things..... and I had some terrible medical emergencies, hospitalizations and surgeries because of infections and inflammation. but eventually it was ruled out.

I... on gluten-free diet for many years, was actually dying from a shut down of my body systems ebacsue of the effects of hidden gluten in my diet and a family propensity to autoimmune disease. I took bad advise from supposedly seasoned celiac disease'ers and did not check on my own or eliminate when in doubt a few foods that slowly knocked my whole system out.

Now my motto is: It ain't gluten-free unless you have investigated it personally.

My other motto is : I put my faith in God and not in recommendations of others on what is and is not gluten-free... If you would like to learn more about the possible traps of living on a gluten-free diet from celiac disease'er who has lost most of her intestines and requires tube feeding, let me know and I will hook you two up for a good lesson.

Interestingly, I had none of the original or classic ususal celiac disease features or symptoms during that relapse, so of course no one thought it was related to celiac disease until after some permanent damage to my small intestines and my brain occurred.....I am so grateful to God that I am still alive and can live to tell this.

Getting back to Lupus:

As a result of that upsetting, confusing and fearful journey, and as ill as I was, I learned pretty much all you can know as a layperson about LUPUS because I wanted to know for sure and know what the heck I could do about it... the many many lab tests and what they mean, the symptoms and what not... and I am sure I can direct you to the right info if I cannot answer you myself. I can tell you, however, it is not considered an associated disease of Celiac..... hardly anyone with Lupus gets celiac disease or visa versa. studies have been done..... so your gluten-free diet or lack of it is not related to Lupus. Lupus is an animal all it's own. I can tell you that I am still an autoimmune case waiting to bloom, and I have family members who have been diagnosed with other rheumatic diseases and I do see a rheumatologist, a neurologist and other assorted docs and I am considered disabled because of organic brain impairments they THOUGHT were related to Lupus and celiac disease, but I do not have Lupus after all. I have inflammatory issues that cause problems, like my supposed celiac disease related 'Enterpathic Arthritis', which are partly treated with Vioxx and other anti-imflammatory stuff... and I am stiill ANA + but nothing further is positive and my issues cannot be put into a direct diagnosis, so it's not Lupus.

I can be of help onlyunderstanding and perhaps some guidence. My Rheumatologist/Immunologist is at University of Maryland Medical Specialties Center at the hospital and he is very on top of the celiac disease and autoimmune issues...

Do you have celiac disease and Lupus, and are you getting coordinated care at a major medical university center? .....

Let me know how I can be of help.

~Kathy from Md.

[angel-jd1]

I can tell you, however, it is not considered an associated disease of Celiac..... hardly anyone with Lupus gets celiac disease or visa versa. studies have been done..... so your gluten-free diet or lack of it is not related to Lupus.

I am curious where your research comes from on this, It is on every major list associated with Celiac that lupus is a disease associated with Celiacs.

Among celiacs and their relatives, there appears to be a higher incidence of other disorders related to the immune system. A partial listing of these includes insulin dependent diabetes mellitus (type I), Graves' disease, Addison's disease, scleroderma, chronic active hepatitis, myasthenia gravis, systemic lupus erythematosus , and Sjogren's syndrome.

I personally have a family memeber who died from Lupus. I am just wondering if you can point me in the direction of where you got your info...I would love to read it. Thanks.

-Jessica

[Guest jhmom]

Hi Kathy:

Thank you for your very informative response. I learned of Lupus not too long ago while researching some symptoms on the Internet. After going gluten-free in Sept I felt a lot better then a few months later I began having EXTREME fatigue, joint pain and my hands and feet stayed cold no matter how many layers of clothes I had on, along with some other symptoms. The joint pain started a while back but I associated it with my job and typing a lot, now it hurts when cooking or just using it in general.

I went back to my GI doc and explained these symptoms to him; he ordered an ANA, CRP then an ANTI-DNA. But also told me a lot of times when a disease is just beginning it may not show up on the results and may take time to do so. However my ANA results were positive 1:640 speckled, my CRP was negative and I am still waiting to speak to the doc about the ANTI-DNA, the nurse said it was negative but would not give me a specific result number. I have read EVERYTHING I can get my hands on regarding Lupus and all of it says that a negative ANTI-DNA does not mean that Lupus is not the culprit, so I guess I just wait for now.

All I know is the fatigue I experience is not normal and I am limited in what I can do on a daily basis, if I do too much it wears me out and puts me in the bed. Like Jessica I read on this site that Lupus is a Disease Probably Associated With Celiac Disease. I know they are both different but if you think about it they are all about "inflammation".

I too have learned the hard way on gluten-free foods, right now I stick to a very simple diet and foods that I know FOR SURE are gluten-free, mainly by process of elimination and calling companies.

Right now I have only been diagnosed with celiac disease and waiting to speak to the doc about Lupus. I hope to talk to him today, I have been waiting over a month to speak to him. It just gets very frustrating. I just want to feel better and feel like a 32 year-old woman and not feel like I can

[GEF]

I too have a family history of lupus. My sister was tested years ago and they say she is borderline... I'm assuming that some of her tests indicated she "might" be and the others were negative. I've heard it's difficult to diagnose since so many tests have to rule it in. I had an ANA test today since the doctor wanted to check it after I mentioned the family history. I hope it's negative, but I'm glad she's checking.

jhmom.. any word from your doctor about it?

[Guest jhmom]

GEF:

Yes Lupus is very hard to dx, the docs look at labs, symptoms and family history. My rheumy has not given me a Lupus diagnosis and won't until she is 100% sure, but she suspects it and is treating me with an anti-inflammatory and Plaquenil which are the medications used to treat joint pain, fatigue and to keep the disease from progressing. I go back to the Rheumy sometime next month and "may" know more then but right now I am just glad I am being treated. I have a positive ANA (1:640 speckled), an elevated SED rate and my Anti-DNA was negative however I do not think they have ran all the tests yet.

I hope your test come back negative too and it's good the doc is checking especially if it runs in your family. Please keep me updated!

Take care

[celiac3270]

What's lupus?

[Guest jhmom]

Lupus (SLE) is a chronic autoimmune disease where the immune system becomes hyperactive & attacks normal tissue. This attack results in inflammation & brings about symptoms such as joint pain & swelling, fatigue, hairloss, sun sensitivity, etc. It can also attack major organs such as brain, kidneys, heart, lungs,etc.

There is also another form of Lupus which attacks the skin, which is called Discoid Lupus (DLE).

[Kathy-W]

Hi I finally found the forum that addresses Lupus. I have a twin sister with severe celiac disease. I have a younger sister that is also a twin who has Lupus. Well for years I had very mild Lupus symptoms and did not realize it. That is until I turned 35 years old and contracted the Chickenpox. After I got over that, my health went down badly. I had very severe joint pain and my fingers would swell up and the knuckles would turn bright red and hurt, hurt, hurt. My knees did the same thing. I had terrible indigestion and a problem with having having a dry mouth and eyes. I developed severe breathing problems. I ended up with the malar rash on my face that happens with SLE. I eventually made my way to the doctor and got tested for Lupus. The tests all indicated it. I also had bad bouts of the night sweats. I was sent to a Rheumatologist who absolutely confirmed that I definitely do have SLE. I am on anti-inflammatory medication and plaquenil and Imuran. These drugs have helped the Lupus problems big time, but I have some bad celiac disease symptoms and they now suspect that I have that too. I have read that celiac disease and Lupus are related. Well I don't know what else to say. I am on a gluten-free diet now.

Kathleen

[Guest jhmom]

Hi Kathleen and welcome to the board! I am sorry to hear you have Lupus and possibly have celiac disease on top of that, having one is bad enough. How are you doing on the gluten-free diet? I have been on it for almost a year and doing well as far as the food goes but more problems have popped up since the first of this year. I too am being treated with Plaquenil, could not tolerate NSADIS at all and I go back to the Rheumy next month.

Regarding Lupus and Celiac being related, I think they are. I have noticed a lot of people on the Lupus message board have food sensitivities and a lot of them have Celiac too. Also when I went to the GI doc the other day (for my current probs) I told him I was dx with gluten sensitivity through Enterolab and he gave me some info on Celiac and at the bottom it listed Lupus among other diseases like RA, Thyroid Disease, etc were linked to Celiac.

I hope the meds & gluten-free diet work for you and you feel better soon!

[Kathy-W]

Hi. I forgot to mention in the other posts about some of the symptoms that led to me being diagnosed with SLE (Systemic Lupus). I have serious problems with sun sensitivity and actually sunburn through the car windows which is definitely not normal. If I am in the sun to long, I get a very severe headache with nausea and vomiting. One time at a family outing, I was in the backyard under the shade trees, but that did not matter and I became dizzy and passed out. I came to on the couch at their house. Once I got out of the sun and in the house, I felt better immediately. I thought I was ok and went outside again. I was outside for a grand total of about 5 minutes and got dizzy again. I was losing my hair, had very severe joint pain and pain in the bottem of my feet to the point where I could hardly walk. I had breathing problems. I had severe night sweats. I had Costal Chondritis in my ribs on the right side. My hands and feet are extremely sensitive to hot and cold. I had Sjrogrens Phenomenom. I had the malar rash on my face. My RA is negative, but I have Osteo Arthritis in my joints and my hips and lower spine. The doctor told me that the arthritis showed up on the x-rays they took on me. I have a serious family history of Lupus and celiac disease. My younger sister had a Lupus related stroke about 14 years ago and is paralyzed on the left side. I don't remember what the number was for my positive ANA, because it was done in 1996 when I got diagnosed. I had a high Sedrate also. I also had heart arythmia. My heart was not beating right. I hope this helps for the folks that may have Lupus. I also have a lot of celiac disease symptoms and am being tested for that now. Like I said before my twin sister has severe celiac disease. Well good luck all.

Kathleen

[enigma]

I was almost clinically diagnosed with lupus just before I found out I had celiac disease (about 15 years ago). Even though I had many symptoms of lupus my doctor was reluctant to actually dx it 'cause he would then HAVE to put me on medication which he said would make me feel worse than the disease. I had the malar rash, joint pain, extreme fatigue, and an ANA of 1:1200. BUT, after I was dx'd with celiac disease and went gluten-free just about all the symptoms of lupus went away too. Now, of course, I am so glad my doctor had a "wait and see" attitude and did not start me on steroids. However, my doctor is watching me closely because over the years my ANA still remains high, varying between 1:600 to 1:1200. (For those who don't know, the Anti-Nuclear Antibodies are considered the "marker" in the blood for lupus. The normal range for ANA is between 1:40 to 1:80, I believe.)

Several doctors over the years have mentioned that when you have one autoimmune disease it is not uncommon to have others. They may even be linked, as it seemed celiac disease and lupus were for me. I truly wish that going gluten-free would help all the rest of you with your lupus symptoms as much as it did me. I'm told they could come back for me at any time, though. It's like a time bomb ticking inside.....I try not to think about it!