I am a 40 year old female. DX with Celiac disease 5 mths ago. DX CFS 10 years ago. My family history goes like this: Father MCTD, Mother Psoriatic Arthritis, Brother Juvenile Diabetes Type 1.
My history goes like this: I have not felt 100% for the last 10 yrs. A lot of this can be explained by the Celiac disease (gluten intolerance). I have been on a gluten free diet for 5 months and some of my symptoms have improved. I was experiencing hair loss, which has now stopped and also lactose intolerance, which also appears to be disappearing now.
Unfortunately, being on a gluten free diet has not alleviated all my symptoms.
I am having very strong gasto-esophagea reflux, which stops me in my tracks, some of this is attributed to a newly discovered hiatus hernia, for which I am taking Nexium. I am also extremely tired.
I also have pins and needles in my feet and hands, along with numbness sometimes. My left thumb joint is very sore, and my feet and ankles are very sore, tender and swollen. I would be almost crying when out doing the shopping. For this I am now taking Mobic and a mild antidepressant. The drugs are helping a lot.
I have had some tests done indicating a raised ANA 1:2560, but my ESR is not raised and C3 and C4 are within normal limits, although on the lower side.
Ten years ago I had nasty hand rashes and was tested then with an ANA of 1:80 and slightly depressed C4. Was told it was all due to anxiety.
My GP contacted the rheumatologist a few months ago when I was first DX with Celiac disease, he said that often relatives of someone with an autoimmune disease can also have a high ANA which is usually of no significance.
My GP is sending me to the rheumatologist as he is unsure whether there is a crossover of an autoimmune complex going on together with the Celiac Disease. I see the Rheumatologist in about a week.
Does this sound like I may have lupus? What do you think.......?
I had what was thought to be severe IBS, episodically, from age 26 onward, incl. several hospitalizations & every nasty GI test known to medicine. Even my esophagus would go batty. Watching my diet seemed to help only a little. Librax didn't help much.
I was finally Dx'ed with SCLE = subacute cutaneous lupus erythematosus = Ro-lupus, in 2000, at age 47(!).
Something really caught my eye just a week or so ago: an Internet article about various kinds of anemia. I was anemic on & off for years, the B12 & Folate kind. The article said that this kind can correlate with *inflammatory autoimmune anemia*. (Hmmmmm, I thought.) Apparently in this anemia your upper intestine can fail to produce enough of some substance that foments absorption in the lower intestine. (Hmmmmm, again?!) I'm wondering: might any of that track with what you describe as *maybe* being Celiac disease?
As for ANA, my great big joke on myself is that I was always negative. I did indeed have arm/back/torso rashes for 8+ years, biopsied repeatedly---but I think the local yokels never performed immunofluorescent testing in addition to the microscopic work. Anyway, the rashes were finally Dx'ed by a teaching hospital dermatopathologist as the SCLE type, annular form. They figured my ANA was being "masked", as sometimes happens in the SCLE subset of lupus.
On my first visit to the big-city rheumie, I was asked to bring a lifelong medical history, in my own words. Even if you aren't asked to provide one, it may be of great use to take along. Plus recent labs, etc.
Like you, I had pins & needles, prob. due to the anemia. Plus fatigue, irritable bladder, migraines, joint pain & swelling, low-grade feves, weight loss, UTI's, stones, conjunctivitis, osteoporosis, sciatica, etc...
I was a classic example of a long-term "subacute", but with only several truly dangerous spells interspersed across years of "stuff". The IBS lasted 1/2 of my life---but in the 10 years prior to Dx, I was sprouting brand-new things all the time, plus the anemia really took hold.
I certainly think it's possible that something like lupus is going on with you, what with your ANA that high & your symptoms. (But I'm surely no doctor!)Some docs do NOT understand that you don't have to have the butterfly rash to have lupus. Or anti-ds-DNA autoantibodies. Meaning, lupus has many faces, some subacute, some fiercely acute (e.g., kidney or CNS involvement). People *without* those highly recognizable features can really struggle for answers & may need to find sophisticated drs. who know lupus in its many forms & degrees.
So I hope this rheumie does a bang-up job with you & pursues all leads. I hope you post again & let us know how you are making out. And I'm sure others will chip in soon, with more thoughts! Sincerely, Vee
Thanks Vee, it is good to hear your story! It can be such a lonely road to go down with this type of illness. I also was dx with IBS for years, but a really savvy GP finally did the Celiac blood test, which came back positive....then I had the tube inserted down the throat (endoscopy) and it was finally confirmed....the greatest relief for me was that my symptoms hadn't originated in my head, but that I actually did have an organic illness. My GI symptoms just got worse and worse until there was blood in my stools, and all sorts of other unmentionables! Even after having a colonoscopy there seemed to be no answers for me....just back to IBS.....but finally my GP must have had another thought, a lightbulb went on, and he requested the Celiac Autotabs....which came back positive......thank God for that.
Thanks for the advice about taking along my medical history, it is something I was thinking about, so on your advice, I will do it this week as I prepare to see the rheumatologist. Thanks again, KT
Vee, also in response to the inflammatory autoimmune anaemia, I haven't heard of it before, but in Celiac disease the villi which are (tiny fingers) in the intestine that absorb the nutrients from food, become destroyed by the gluten you ingest and you no longer absorb nutrients without the villi in full functioning order, therefore you slowly but surely become deficient in iron, folate, etc...for me, I was iron and folate deficient, and also my bones are lacking in calcium, but this is gradually being rectified through supplements and diet, now that I no longer have gluten in the diet, my villi are repairing themselves. It means that I don't have to make up to 6 trips to the loo every day....in other words the food is being absorbed again.....it is possible however, that autoimmune anaemia could be responsible for some of our problems....I wish things were black and white sometimes! Best wishes K
Hi, ktart. I'm going to read a bit on Celiac disease. I'm not sure I was ever tested for it, but my GI symptoms started so many years ago that perhaps the Dx & its labs were not in common dr. "usage".
On your comment about anemia: as I read up on it, I found autoimmunity is only one of quite a few possible causes. No dr. has ever said this pointblank, but I believe now that my GI problems were primarily caused by lupus all along (but I could be wrong on this). I think I was on the slippery slope to lupus for years. I had a blistery watery head-to-toe bullous rash at age 8; shin/arm pain with fever & abnormal ESR & WBC (age 13); etc.
More later on our very favorite subject, GI problems ( ).
With my best, Vee
Dear ktart, I just read up on Celiac. WOW. Interesting how there's overlap in terminology about it vs. lupus. Some of the overlapping subjects I noticed were IgA, IgG, anemia, osteoporosis, etc.
Plus I wonder what this "Dermatitis Herpetiformis" rash seen in Celiac looks & acts like...?
I just checked my Dr. Wallace hardcover. Like many writers, he speaks about "functional bowel" problems, like those seen in Fibromyalgia, being VERY common in lupus. He says that more occasionally lupus can affect the intestines, or there may be some concurrent GI autoimmune (like ulcerative colitis). He doesn't mention Celiac---so not all that helpful, alas...
Dr. Wallace does write about how hard it is to rule lupus In or Out, where a patient has a high ANA & lupus-like symptoms---but no circulating autoantibodies. Here are 3 approaches he cites: (1) bone scan (lupus can inflame joints but Fibro will not); (2) lupus band test, to look for specific combinations of immune deposits at the dermal/epidermal junction, EVEN WHERE there are no external rashes; and (3) following closely first-degree relatives of SLE patients, who may have a high ANA (25% will develop some autoimmune but only 10% will get SLE, it's thought).
My layman's sense is that knowing if you've got Celiac vs. lupus would matter considerably, as lupus usually requires lupus meds. And now I wonder how many people (if any) can have BOTH? Hmmmmmmm....
I also react badly to vrs. foods (wheat bread, wheat crackers, corn, etc.) and have learned by trial & error to avoid them. But I don't doubt for one minute the SCLE Dx I got, as the final confirmation for it was the vrs. tests on my skin: immunofluorescent stain tests, also cell border vacuolar alteration seen under the microscope on even my very earliest biopsies.
But now I find that *I'm* really eager for *your* appt.! Looking forward to your next posts & wishing you luck with your appt. from Vee
When you look up Celiac (Coeliac) disease, you may be interested to find that SLE is linked to it, it has been found to co-exist with people who have lupus, and is also now a standard test for people who are DXed with Juvenile Diabetes Type 1. There are many, many (hundreds) of symptoms for Coeliac Disease, which is why it is confusing, especially if there is another autoimmune disease underlying it. Alopecia is one of the symptoms, as are the many GI probs, such as diarrhea, constipation, blood and mucous in stools, tummy pains, emotional disturbances, peripheral neuropathy and even fits, as it can affect the brain, people can have psoriasis and psoriatic arthritis, joint aches and pains, and people can also be asymptomatic and have no symptoms at all. The main reason to find out if you have coeliac disease and to then abstain from gluten, is that it can increase the likelihood of stomach and bowel cancer. In kids who have it, they find it very hard to concentrate and are irritable, etc, kids can suffer from ADHD, and adults can get depression...there is also a 'blistery rash', which is more common in adults and rarer in children. The rash is called Dermatitis Herpetiformis. DH can be characterised as an intensely itchy skin eruption distringuished by blistering outbreaks usually on the elbows, knees and feet. They symptoms of intense burning, stinging and itching cannot be overemphasised. It is common for DH lesions to be symmetrically distributed on the elbows, knees, buttocks, scalp, neck, shoulders and lower back. The face and facial hairline are occasionally affected. And rarely, the lesions occur within the mouth. (http://home.swbell.net/ligita/PrescriptionGFLifestyle.htm) this is a helpful website that gives a good overview of Coeliac Disease.
The rash sounds suspiciously like the one you described having as a child.
Best wishes, KTart
It's all very interesting.......we'll just have to wait and see now, thanks for the new information, I didn't know that they could do those other tests. It's frustrating waiting for answers. It's possible I only have Celiac disease, and it may take longer for these other symptoms to subside, it's also possible the symptoms may continue if enough permanent damage was done due to the length of time it took to get a diagnosis, and again it's possible I have another autoimmune disease which was underlying the Coeliac disease......I hope the rheumatologist is thorough and kind and best wishes to you in your search too.
If they were able to Dx you with Coeliac disease as well, it's possible that you may be able to experience some relief from the GI symptoms by abstaining from gluten, but whatever you do, if you are going to get tested, don't start cutting it out of your diet yet.....as the tests are dependent on you continuing to eat gluten. The villi will begin to heal otherwise, and they won't get an accurate reading for you on the tests.
The first test is a blood test, and if the antibodies are there, they will schedule you for an endoscopy to check out the villi and see if there are signs of flattening of the villi.
Gluten is also found in most sweet and savoury biscuits, pastries, breakfast cereals, drinks like milo, malt, barley and rye. There are many hidden sources. But like you, I have never been a keen bread eater, although I loved barley. On a gluten free diet you are still able to have glucose (in lollies) and dextrose (in frozen chips) which are both derived from wheat, but there are problems if you want to eat out and have hot chips (because the cooking oil in the vats will have usually been contaminated through frying of battered fish, etc, which contains wheat flour). There are many other options for celiacs though, and I have found that chefs are usually very happy to prepare a gluten free meal if given some notice beforehand. Also many coffee houses already cater for gluten-free options, it is surprising how many people suffer from it!
Bye for now,
Hi, ktart. I just saw your post & had read much the same thing this A.M., but not so detailed. That's a whole lot of annoying overlap, isn't it?!
My blistery rash as a kid was global: started on hands & arms and went to feet, legs, & torso. My current rheumie suspects it was "bullous lupus", but of course no one will ever know for sure at this late date. (But this Dermatitis Herpetiformis rash doesn't sound out of the ballpark, does it?)
My later rashes (SCLE) were circular red welts & rings, barely itched, and didn't scar or depigment. If I hadn't felt so lousy otherwise, they'd not have concerned me, as they bothered my skin so little. (Looked darned weird, though )
Anyway, I hope this new rheumie can zero in quickly on the underlying cause of all that's going on with you. You sound like you could really use a breakthrough right about now. Update us when you can, OK? Hang in there. All my best, Vee
I went to see Rheumatologist yesterday. He doesn't believe there's anything wrong with me. He thinks that my symptoms are brought about through depression. He said my ANA 1:2560 is simply due to me having relatives with autoimmune diseases, therefore it is insignificant/irrelevant.
He thinks I may benefit from a Podiatrist, as my feet are so tender and sore, but he thinks there is no inflammation there, no arthritis.....I believe he thinks I'm having myself on. Well, I'm very depressed right now.
It would be okay if I didn't have pain and didn't feel dreadful, I could be quite happy with such a diagnosis. But unfortunately for me, I still have to deal with the symptoms I'm having, and try to get my head around the fact that it's simply caused by depression, which I have now, but before I went to the doctor I'm sure I felt a lot better & happier inside myself. It's hard to be told your a hypochondriac.
Dear ktart, I just looked up ANA levels in the hardcover I keep at home. This rheumie thinks considers a level greater than 1:1280 as being "high", and associated with what he calls "a real rheumatic disease" (or over 30 International Units with the other measuring system).
But am I a doctor? Not in this lifetime.
Maybe you could scout around in some of the hardcovers in bookstores or libraries, the Internet, etc. to see what you can find & how you feel about it.
Also, did the rheumie ask you to make a follow-up appt? Or ask you to call in if anything new appears?
Another thought: you could maybe start a new thread, just with that ANA level---ask for more feedback from the others here & add'l suggestions.