Angela Crowley, MD, is up-front about it. Accurately diagnosing an autoimmune disease can be tricky.
“People on average see six doctors over a period of 4 years before they get a diagnosis.”
This is because, in general, autoimmune diseases tend to arrive unpredictably, disguised as other conditions, offering only confusing clues as to what they are.
Why Are Autoimmune Diseases So Mysterious?
One reason is that the list of what’s considered to be autoimmune is long and ranges from the very common to the extremely rare.
Did you know? The following are all autoimmune diseases:
- Celiac disease
- Diabetes type 1
- Multiple sclerosis (MS)
- Inflammatory bowel disease
While very different, all these disorders have one thing in common: They occur when a person’s immune system decides to attack healthy body cells. Instead of fighting infection with antibodies, the body produces autoantibodies. The body is essentially fighting itself.
Where and how this self-attack occurs determines the disease and its symptoms. But the occurrence of these symptoms is not simple, clear or predictable. Other situations make diagnosis problematic:
Asymptomatic or Delayed Symptoms. You can have osteoporosis, for example, and have no symptoms at all — only getting diagnosed after a bone fracture. Or with ankylosing spondylitis, the average diagnosis timeframe is 10 years — about how long it takes for the condition to be visible on an X-ray.
Common symptoms. Or you could have severe joint pain as a result of any number of autoimmune diseases, but lack any other symptoms to help doctors determine exactly which one you have. Vasculitis, for instance, is systemic, which means, along with causing inflammation of blood vessels, it can cause pain anywhere and everywhere in your body.
Autoimmune Disease By the Numbers:
Co-Conditions. Your celiac disease or Grave’s disease could lead to or just show up with rheumatoid arthritis; having both means one condition can mask the other.
Misconceptions. You might be in pain and avoid seeing a doctor. “People ignore their pain, thinking they are too young to have arthritis, which isn’t true,” says Dr. Crowley. “It can happen to kids. Rheumatoid arthritis and osteoarthritis are two different things.”
Mimics. Dozens of diseases can look like MS, for instance, from lupus to other neurological conditions. And it takes time to rule out.
Uniqueness. Lupus in one person can show up with a set of symptoms completely different than the ones that show up in another person. Doctors can’t rely on symptoms alone to determine the nature of the affecting disease.
Diagnosing Autoimmune Disease
Varied, numerous and inherently elusive, the diagnosis of autoimmune disease can be tough detective work.
But what might seem daunting to others is precisely why Crowley became a rheumatologist. “I find it to be fascinating. Everyone is different, so I’m surprised and challenged daily. It’s really rewarding to be able to identify a rare disease and to be finally able to give a patient an answer to symptoms and something that can help them. Or to find a rare presentation of a common disease.”
So how does one diagnose if you can’t count on symptoms entirely?
Myth vs. Fact: Celiac Disease
The proliferation of gluten-free options at restaurants and grocery stores might look like just another trend. But celiac disease is a serious autoimmune disease. And though sometimes treated as such, it is not an allergy one can grow out of or ignore. If a person with celiac disease ingests gluten, she can trigger a number of symptoms, not all stomach-related; over time, eating gluten can give rise to more autoimmune diseases.
Diagnostic tests include, but are not limited to:
- Antinuclear antibody (ANA) test—the presence of autoantibodies does not automatically mean you have an autoimmune disease, but a high level can indicate lupus, scleroderma, juvenile arthritis, others
- Comprehensive metabolic panel
- Tests associated with inflammation and arthritis
“Rheumatoid arthritis I can usually diagnose in the first visit; it’s normally straightforward.” Which is good, since it’s very important to be diagnosed early. “The earlier we can treat it, the more likely it is that it will be easier to treat later on and you won’t need as much medication.”
Which is why Crowley is excited about the advances being made in the field.
The latest? “We have a new imaging technique, a new type of CT scan, to diagnose gout. We’ve never been able to do it with imaging before. I’ve had patients who didn’t know it was gout until we used this technique. To diagnose gout you have to look at joint fluid and see gout crystals, but there’s not always a big collection of joint fluid to examine. Or you can look at uric acid, but some people have high levels of uric acid and no gout. You might suspect, from the symptoms and the blood tests, that the person has rheumatoid arthritis. Which is a problem, as rheumatoid arthritis and gout require very different treatments.”
But with the dual-energy 3D CT scan, diagnosis is straightforward. “The gout crystals look green. Fun pictures,” adds Crowley.
Flares & Triggers: Autoimmune Disease
While an ultimate cause for autoimmune disease remains unknown, research has shown that:
- People can have a genetic propensity for an autoimmune disease
- A trigger can activate or turn on the gene
- Suspected triggers include environmental, chemical, sunlight, stress, drugs and infection factors
- These triggers can cause a disease to “flare” up
- These disorders can appear at any and all ages, making it difficult to pinpoint exact causes
Another thing is clear to Crowley and others in the field. “In the last two decades, we’ve seen a significant increase in autoimmune diseases, and a lot of experts think it’s the environment.”
Specific research has shown that tobacco use can turn on these genes, and gum disease can turn on rheumatoid arthritis genes.
But as with most aspects of autoimmune disease, these are hints, not answers. “We suspect it’s not just one thing, not one sole cause.”
No Quick Fixes: Treatments and Hope
There are no known cures for autoimmune diseases. Rheumatologists look to medications, supplements and physical therapy for the relief of symptoms and suppression of the immune system.
Crowley says that’s no reason to lose hope. “There is a lot of good research going. We have a lot of great treatment options. One hot topic in research is trying to predict the right treatment for each person. We have to do trial and error to see what can put someone in remission, but with more knowledge about disease features and genetics, we can narrow down the options and go straight to the most appropriate medicine right away.”
Stress and Self-Care
Along with medication, Crowley advises her patients to practice good self-care. She knows living with an autoimmune disease can be stressful. “People break down into tears in my office at least once a day,” she says.
But stress can make symptoms worse. “People get flared up when stressed, so I tell people we can’t fix the situations, but we can control the response. Good sleep and exercise are things we can work on. Tai chi and yoga are good for the body and mind (and there’s free videos for these on YouTube),” and can help manage symptoms. She also checks patients’ vitamin D levels, which are important for bones and the immune system.
Open for Business: UVA Rheumatology on Pantops
You can visit Crowley at her office on Pantops, where there’s plenty of free parking and friendly staff. View clinic directions, hours, contact info.
And while there aren’t published studies showing that diet benefits autoimmune diseases, she does see that diets can affect individuals, some of whom find that removing gluten, dairy, meat, sugars, fats and artificial ingredients help.
Even without a cure, Crowley finds her work rewarding. “We can put someone in remission and take them from not being able to do much of anything to being able to return to work and play ball with their kids. I get to develop relationships with people. It’s a team approach between us and our patients.”
And because an autoimmune disease can affect various parts of the body, Crowley also teams up with doctors in other fields. She doesn’t just treat one thing, she says. “We treat the person as a whole.”
Do You Have an Autoimmune Disease?
It’s hard to know without the care of a specialist like Crowley. If you have inflammation, joint pain or other vague symptoms, see your primary care physician for a referral.
Auto-immune disease is such a big traitor. I’ve been seeing patients with Guillain Barre Syndrome and Multiple Sclerosis, and I can’t stand to see them go through life having disabilities and limitations.
The need for research funding should be implemented to limit the occurrence of this disease. It is really crippling.
Two years ago I presented with scleritis in the right eye. My opthamologist had a full work-up of tests done including CT and ANA tests to try and find the cause. Everything came back negative. While being treated for my eye, I began to have other symptoms and kept a log of them to take to my primary care provider. Those symptoms included exhaustion, fever, joint swelling and pain, muscle pain, rash on my arms and legs and another rash across my face which darkens or lightens in color. I was again tested for Lupus and RA but tests came back negative again. Since all of that I cant go anywhere without sunglasses as sunlight and bright light in general hurts my eyes. The rash on my face is still there and fever and muscle and joint pain and swelling come and go. What I am wondering is if its possible to have an autoimmune disease with negative blood tests and if not where can I go to get answers if my primary cant help me? I am a mother of three little girls and it would be amazing to have my energy back. Thank you.
Dr. Crowley replies:
I’m sorry you aren’t feeling well. There are many autoimmune diseases
which can be associated with scleritis and it is absolutely possible to
have certain autoimmune diseases and have a negative blood test. It
certainly makes sense for you to make an appointment with a
rheumatologist as soon as possible or ask your PCP for a referral.
Thank you for the information. I have one more question for you. What is your opinion on the possible link between the Epstein-Barr Virus and Lupus? Do you think that its a possibility? I stumbled across an article about it two years ago while researching autoimmune diseases. I only ask because I had a bad case of mono as a young adult and am now a carrier of EBV. Thank you so much for your insight.
I am disabled from two work reatled injuries, got hit with the worst RA one can have it is killing me, I can’t afford to go to a dentist must less a holistic one, I did call about one months ago but he is a long way for me. With my spine problems I am not sure how I’d get there much less pay for it. I have 2 maybe 3 root canals. Is there any free help out there? I’d been on all sorts of med’s but got off them all including my enbrel shots of twice a week methotrexate for RA
Nafrat, if you have no dental coverage with your health coverage for disability, I know some dental schools offer free or sliding scale care if they take you as a patient. It’s worth a shot. In my state there is apple health care / medicaid that offers some dental care for people with disabilities. But the clinics that accept is were so bad I just try to pay out of pocket at decent places offering deals. The one place I wouldn’t be afraid to go was the UW dental school, they accept medicaid but only accept patients with conditions their students will find useful. It’s worth a shot to try a dental school. At least it will be clean and the students will all be supervised – better than many places with little oversight.
After a month of exhaustion greater than I usually feel, which is a lot on a good day, joint pain, lack of appetite, throat pain, extreme bouts with raynauds and weakness, I saw the dr. My Ana came back speckled pattern with high levels. I am seeing a rheumatologist next week because it is strongly suspected I have systemic sclerosis. I have had MANY of the symptoms for years. The last “episode” i had went on for several weeks immediately following a highly contentious court appearance for custody issues with my ex husband. I just had to do the court thing again 4 days ago and I just can’t move. Same symptoms as last time…..just as severe. Could the court dates and stress be causing these episodes for weeks like this? Is there that much immediate cause and effect with autoimmune disease?
I have a scalp psoriasis and in April the Dr. gave me a topical solution of Clobetasol Propionate. It just dawned on me that I started applying this as needed the beginning of May and by the end of May I was in a full blown flare with what I presume is IBS. I have scheduled several Dr. appts. to investigate this. Eliminating dairy and flour has (I believe) tamed down the flare tremendously. However, my question is this……if you control the “flare” of one autoimmune condition, (my scalp) does your body just adjust and flare up somewhere else in some other condition?
HI, doc. i have a child 8 years old diagnosed with rheumatoid arthritis, she has severe pain that starts from the toes , fingers shoulders and of late cthe pain are also on her back . What do i do to help this child get off the pains . This has led to irregular school attendance.
I simply do not understand why it would take 4 years for a diagnosis with diseases like lupus, sjogren’s, MS, etc….That’s way too long for someone to suffer and miss out on life, work and so forth. You wrote in a comment above that people can have an autoimmune disease yet have negative test results. So, basically what happens is one goes to a specialist who orders the tests, they come up negative and the patient is sent home. It seems more and more that test results are given more importance than the patient’s symptoms and suffering. Four years or more for a diagnosis? That seems horrific to me. I know that much of medicine is trial and error, but this seems like more error than trial. This is all very disappointing and also frightening at the same time.
I thank you for info. Have had chronic dry eye for five year. Between having plugs lips flow vision impairment I now wear scleral lenses I recieve from Duke. I have been to many docto and rheumatologist. They have tested me for every thing possible In 1999 I lost fifty pounds and was very sick I had the damage the celiac presents but test negative. Five years later I started gf diet and did feel better. I was tested and tested since my eyes started getting dry. I keep on going need my job. Whether they ever find anything out or not I know that the cure ain’t there. The treatment for dry eye is pretty generic. I had lesions on my eyes that at times hurt so much I wanted to cry. I stayed tough and still work. I thank God for giving me a tough gene. I went to a rheumatologist a couple years ago and he gave me plaqenil 200 mg once daily. After a year he asked me how I felt and nothing is going to heal my eye help discomfort when contacts out but that is about it It did help my OA a lot. Long store short doctor took me off plaqenil because he said it doesn’t help OA and he didn’t want to take responsibility. Me time I was diagnosed with morphea. In remission tight now. After two months of no plaquinelarthritis horrible. Found a new rheumatologist and she put me back on plaqenil and seems interested in helping me get comfortable. I don’t do pain meds. I do treadmill seven days a week thirty minutes and swim. I hope it keeps me going. I sixty.years old and have too much living to stop. Good to vent though. Don’t vent to family mom is tough
I’am a type 1 diabetic with an insulin pump and I’ve had it for 20 years. I delivered my baby 5 1/2 years ago I’ve gone down hill and I’ve developed a lot of autoimmune diseases. I see a rheumatologist for RA and Lupus (because there not sure which one I have so they just started calling it mixed Connective Tissue Disorder.). I have hychmotos thyroid disease. I was just diagnosed with Celaics Disease. I have autoimmune hives (forget the name). I’ve been called the autoimmune nightmare! Anyway, I need help!! I see a lot of specialists, but they don’t communicate. I want to start see an internist–1 doctor who is like my primary and communicates with the specialist. I’am not getting better. Just spent 4 days in hospital hooked up to fluids,antibodics for pneumonia and dilaudid for all my joint pain! I want to a better life…..I can’t even sit on the ground and play games with my 5 year old! Hel!!’
My 13 year old son was dx with Celiac at age 7. At that time, he was anemic and had severe beaus lines on his thumbnails and big toes. After being gf, they went away, his hemoglobin normalized, and his Ttg was negative. Last summer, the beaus lines starts reappearing, he started vomiting, constant nausea and abdominal pain, he was slightly anemic and his Ttg was slightly elevated. His DGP was negative however. We have a gf house as we have 3 celiacs, and he is extremely paranoid about what he eats, so I know he wasn’t sneaking it. We tried to wait it out, three months later he was worse, and Ttg had gone up a few points. Have done ultrasound, xrays, hida scan, endoscopy and colonoscopy. No sign of active celiac. Negative Calprotectin and CRP. Beaus lines are very deep and prominent. He can not keep solid food down and has been living on Ensure for months. Has dropped from 65% in growth chart to 25% and has list about 15 lbs. GI VERY reluctantly agreed to do an MRE and pill cam to make sure Crohns is not in the small bowel, but does not think it will show anything. If not, he said he can’t help us and thinks it is just anxiety, which is does have severe anxiety and depression…all of which was there when he was dx celiac, and then went away, and now came back when he got sick again. I know anxiety didn’t cause the beaus lines or elevated ttg or anemia. We are at UVA…if the GI dumps us- where do we go next for answers?
I Have chronic joint pain along with cluster headaches and muscle aches and weakness… extreme fatigue as well as blurry vision… it has been going on for almost 2 years with no diagnoses… 2 ADA tests both negative… any ideas?
I have seen two rheumatologists in Seattle in less than one year. I was told that a rheumatologist is the doctor who will treat me systemically and track all the other doctors I have needed to see. So far I have about the same peace of mind I had before I saw these two doctors – about zero. They do not plan to do anything for me, they just want me to see them once a year. I cannot afford to fly to Virginia to take a chance Dr. Crowley is truly any better. My symptoms are real, but our health care is very poor in this country.
Hi Cynthia, We’re sorry to hear about your experiences. Autoimmune diseases can indeed be challenging. We wish you the best!
I’m a 54 year old female and have had positive tests for autoimmune disease.
I have had symptoms for years and thought the pain come from my osteoarthritis.
The pain in my joints have gotten worse.
I have muscle pains that occur in different parts of my body at different times.
I have trimmers that happen to my muscles when I’m sitting still.that are painless but just twitch.
I have issues with constipation sometimes and other times I barely make it to the restroom in time.
I swear all the time and I’m stressed weak and extreamy tired.
Dont like going out of the house and its getting harder and harder to take care of myself.
They cannot pinpoint what kind of autoimmune deficiency I have. But they are treating me with 200 mlg of Plaquenil
Twice a day.
I do feel somewhat better but still no energy still have pain tho sometime it is more dull
I get dizzy and am hot all the time.
I still feel like I don’t have a life.
Is anyone with symptoms like mine been diagnosed. Yet
I’m hoping they find out what it is soon
Before its to late.
I raise my two grand twins who are 3 and need me.
I’m hoping to be treated before this disease hurts me so bad I can’t recover
Pamela, Thanks for sharing your story, though it sounds like such a painful one. We hope you get your diagnosis and some treatment soon!
For 2 years i have been seeing a rheumatology specialist and was told today because he can’t see any inflammation he thinks i am just suffering from normal aches and pains! It is so frustrating that i can’t get a diagnosis. Every few months a new joint will become sore and painful, whatever it is i now have it in the joints at the side of my feet both right and left, my big toes, my thumb joints, wrists and more recently my first finger knuckles all right and left, exactly the same place. Also severe dryness of mouth and eyes. Surely there is some other test that can be done?? I am 37 and have a 3 year old, it’s quite scary thinking if this carries on I won’t be able to look after him properly, i feel like its just going to travel to all my joints and nobody is doing anything about it. And suggestions about what i can do next would be appreciated.
Kerry, while we can’t give you medical advice, we do want to let you know that we have rheumatologists you can see: https://uvahealth.com/locations/profile/uva-rheumatology-pantops. We wish you the best!
I had classic RA symptoms tested positive for RF highest19 ANA CCP positive but it really high numbers. Started in hands stiff in am for one hour hard time using them until the loosened up. Also just recovered from Planters Facitisis. Shortly After diagnosis,the pain went into foot tendonsand it hurt so bad to wak. Was started on Planquel 2x a day. Was on for almost a year, labs for RA came back normal but same amount of pain infeet. Rhuematologisst reduced medications one pe day within 2 weeks pain became worse moved into joints. Went back up on medication It stopped working. Been off all RA medication despite the pain and swelling it now my joints, especially middle knuckle, if I do work all day clean my house work outside I can barley move the next dy so many joints are involved depending if I use them, today hands hurt swollen knuckles feet, knees ankles wrist, legs weak, neck and back but I did lay carpet for 2 days but it was not that strenuous. I feel like I was hit by a truck. Rheumatologist seems to dismiss my pain. It is real and has taken all that I enjoy in life away, as I was a very physically active person which helped with severe depression. I see a Rheumatologist, therapist, Primary Care Doctor Pyschiatrist. I cannot live like this, it’s torture. If I take steriods for flares or the inflammation it gets in down but I become suicidal.
Marianne, it sounds like you’ve been through so much. Thank you for sharing your story. Auto-immune disease is so tricky and difficult, on top of causing pain. We wish it weren’t so!
if i was to consider having Refractive Lens Exchange or lasik treatment would the Drs look for a underlying Dorment issues like chronic and systemic inflammatory disorder. uveitis disorder. Auto immune disorder.
Sajid, we recommend talking with one of the autoimmune doctors directly. You can call one of our three clinics or make an appointment. We wish you the best!
I just had a chest xray am wondering what diease this could help diagnose. Also, would like to know which diseases relate to the sinues. Im coming up to a year of going dr to dr for an answer. All im sure of i got a positive for reactivation of ebv, fevers…rashes…fatigue, not lifting. Positive ana. Negative ra. Done multiple tests for lupus, with only a slight elevation of ds dna, but normal compliments. I cant get hot or stay in the sun. Raynauds, dry skin, mouth, eyes. Strong family history of autoimmune. Just tired of feeling this way, i am very physically limited. Im female, 32.
We’re so sorry to hear about your challenges. We can’t provide any medical guidance here, but we encourage you to call an autoimmune doctors directly at one of our three clinics or make an appointment. Here’s hoping you find answers and relief.
Hi, I was diagnosed in Jan. 2017 win Peripheral Neuropathy, it started in my toes and really flared up in early Oct. 2017. I have had many test’s etc. which all come back alright, good but frustrating because I get no real answers! I now have tingling in the ball of my feet and heels quiet often also numbness and burning in my fingers at times. I am taking Pregabalin 75mg (2 daily, 1 at night) and Duloxetine 30mg (1 daily) also Lipoic Acid, Turmeric, B12 and Ginko Biloba. Do you know of anything else that could be useful? Any suggestion’s would be gratefully appreciated ! Regards from OZ,, Maureen .
Maureen, that sounds so frustrating! Unfortunately, we don’t have the ability to provide medical answers here. Have you seen any experts in peripheral neuropathy?
I ha 3 positives for lupus 4yrs ago now I cannot get a positive result? I have lymphedema, psoriasis, hashimotos & chronic pancreatitis and have just been diagnosed with Achalasia yet my doctors are unable to connect any dots. It’s causing depression all the treatments, enzymes and vitamins when I feel I could be diagnosed and treat with far less medication.
Kym, your situation sounds painful and frustrating. While we can’t provide medical advice here, we do recommend that you see an autoimmune doctors at one of our three clinics. We wish you the best!
I started out having ringing in my ears at the age of 18 which has never went away. I was always athletic and played many sports such as tennis and was seriously involved in bodybuilding for a couple of years. At the age of 20 I started to develope what seems like tendonitis in my knee but has since then spread to basically every tendon in my body including my eyes and jaw (I now have to support my mouth while eating or the tendons in the back of my jack will get swollen) I was also diagnosed a year ago with eosinophilic esophagitis (Im about to turn 28 now), besides this diagnosis everyone of my blood test results comes back perfect. I have no idea what is causing this and would like to finally have my life back. Does anyone have an idea of what could be causing this? Im unable to get any answers anywhere….
Karl, It sounds like you’ve had a frustrating journey so far. You’re not alone. So many diseases continue to cause suffering without a lot of clarity on the cause or fix. We can’t offer medical advice here on the blog, but we do encourage you to seek care from a healthcare provider who could work with you on solving these issues. You can find our auto-immune/rheumatologists at the locations listed here: https://uvahealth.com/services/autoimmune-rheumatology
We wish you all the best.
One thing to keep in mind is that calcium and vitamin D, which are both found in milk, is essential to keeping your bones and body healthy. These nutrients are not only important for keeping you healthy, but also for preventing osteoporosis and have been found to help with arthritis. So, you would probably be better off drinking milk than not, especially if you aren’t taking any vitamins to help provide you with calcium and vitamin d.
Thanks for the input on these important vitamins!
Just starting my journey,broke out with a nasty purpra rash without pain. After a few wks spreading and becoming very painful and the onsite spot just progressively gets worse looking and painful. Seen dermatologists and had a skin biopsy on the newest spot at the time on the opposite leg. BIOPSY: unknown vasculitis of the small blood vessels. Primary doctor has no clue what to do as does the dermatologist. All test have came back neg.Urine had some protein. But they are not concerned. Prior to this had a cough for a month. Xray showed possible pnemonia. Going on third xray no change with spot they are following for airway I quess ? Also prior to that was having chest pain diagnosed at e.r twice with plurisy. Followed up with a cardiologist said it was inflammation of the chest.from ribs one and two??? Been on antibiotic for the cough which the purpra spots were already there before taking them. Currently on predizon for three wks. The original purpra spot which is the one that has changed so much and is around the ankle very tender and painful. Looks more like a blister at this point. E.r doctor said nothing they can do. What kinda doctor should I see next. My Primary has not a clue what to do and the dermatologist either? Have just got a new spot on my chest it appears to be?? The others are on my legs around ankles.
Robin, The challenges you describe sound really hard. So sorry you’ve had such so much pain and frustration. While we can’t offer medical advice through this blog, I would certainly advise seeing a rheumatologist. You can find a clinic here: https://uvahealth.com/services/autoimmune-rheumatology Wishing you the best.
Hi, i’m a 27 year old female with many issues with my gut! I have also had a cataract removed from my left eye and i’m short sighted in the left eye too. Symptoms of gut issues are basically excessive bloating, pain, constipation.. I got a test for coeliac and it came back negative and then I got a genetics test and it came back saying “suggestive of coeliac but not diagnostic” or something along those lines. I had an anti nuclear anti body test which came back as 1:640 which I was told was very high.. it says the pattern is dense fine speckled and it is suggestive to antibodies related to DFS70. As you can imagine, i’m so frustrated as no one can tell me what’s wrong. I get occasional joint pain, occasional cystic pimples but since giving up gluten my skin is clear. The gastroenterologist said I don’t have coeliac but he ordered more tests to make sure, I have not had a gastroscopy yet. I get fatigued easily, have dry eyes which i use drops for, lower abdominal pain and some pain when going to the toilet, I also got my first ever filling today and he said I might need more and i’ve always had perfect teeth.. I feel like everything has happened at once. Can you please help me by telling me who I should see next. I’ve had mri and cat scan as they thought I had ms to begin with because of my age and sex but it came back clear. Should I see a rheumatologist or immunologist or something? Thank you
Sid, while we can’t give medical advice on this blog, we can certainly encourage you to see your primary care provider to talk about your next steps. It very well could be that you need to see a rheumatologist, and we certainly have several here at UVA. The tricky thing about celiacs, I can mention from experience, is that you can have a sensitivity to gluten without testing positive for celiacs. That is something you should discuss with your doctor, however! Best of luck, Amy P.S. You can find a doctor here: https://uvahealth.com/findadoctor
Autoimmune diseases are hard to detect. My doctor is still treating me . In confused ,my doctor told me that two parts of my body is fighting my body. Is it auto immune disease. I don’t know. But my. Doctor is looking towards an auto immune disease with all my symptoms in having.
Thomas, yes, you’re right – they ARE hard to detect – and treat. We wish you strength and patience while you wait for more definitive diagnoses. Thanks for the comment!
Been diagnosed with multiple sclerosis in 2015, and I was a woman of 50. They put me on Rebif which I took until 2017 and was switched to Copaxone. I had two relapses on Rebif, none so far on Copaxone. I do notice my balance was getting worse, and my memory, as well as erectile dysfunction and spasms’ had no choice to sick for other solution and I was introduce to totalcureherbsfoundation om which I purchase the MS herbal formula from the foundation, the herbal supplement has effectively get rid of my multiple sclerosis and reversed all symptoms.
I have two autoimmune disorders. Type 1DM for 43 yrs and Hashimoto’s Diagnosed 30 yrs ago but symptoms started about 8 yrs prior to DX. I have had chronic complaints of muscle and joint pain and multiple tests for circulation, nerve conduction which was determined to not be the source of problems (due to DM) I have been screened for Rheumatoid arthritis. I have negative ANA which i find puzzling. I have Dupuytren’s in hands and feet but have been told that is not autoimmune. I have low back pain of increasing severity over the past 10 years. The distance I can tolerate walking has reduced significantly. Now I can only tolerate swimming with any regularity. My energy levels continue to decrease. I have had issues with difficulty sleeping and depression. and anxiety which have been treated. I recently learned of the GAPs diet and plan to start implementing. Gut health scientifically proven to be a major impact on Cancer, Heart disease and Autoimmune disease and more recently autism and mental health. Dr. Crowley, have you followed the Dr. who developed the GAP’s diet, Dr. Natasha Campbell-McBride? Do you recommend this at all for your Autoimmune patients. It seems like a harmless thing to try if you have autoimmune issues that have not yet been narrowed down. Do you have any insights you’d like to share? Thank you for reading this.
Thank you for your input! Dr. Crowley doesn’t work here, anymore, however. But I’m sure others will be interested to look into what you’ve mentioned. Take care!
What are the odds of having 5 autoimmune diseases all together?
I stumbled across this site on complete accident while researching Autoimmune disorders- I have been searching for answers to all my symptoms for years now and actually Dr. Crowley is someone I seen in IL (the first Rheumatologist) and I had to switch from her because I was not satisfied with her care or her overlooking of symptoms and not paying attention to test results and recommending further tests. I believe proper care is actually finding a doctor who listens and pays close attention to the patients symptoms. Having an autoimmune disorder sucks but not having answers or a doctor who brushes you off is far worse.
i was diagnosed with RA from my GP and Emergency Doctor about 1.5 years ago. My blood work (RA factor) has been up and down for the same time, one month could be 8 next 12 and so on..not sure as I haven.t review all the bloodwork obviously. However I spend the average month with difficulty walking with intense pain in my ankle, knee, also shoulders, wrists, and recently pain in my thighs, groin and both hips. Lasting 3-4 days. Recently was suppose to move to biologics, but was refused THAT day because I felt good? Pain/swelling comes n goes. So Frustrating. Today 3 days after my visit I have a swollen wrist, feels broken and cannot bend. She asked me to see her in 3 months. if I have swelling contact her and she will try and see me if she has cancellation and will start Humira. I usually have a few days a month without the intense pain, but always sore. Currently was told the Methelhydrate and other 1st line drugs are only 30% effective and wanted to start biologics(6 months ago). When Im swollen and in pain, I have trouble going 100km on a whim and she only works Mon-Thurs 9-330..and is very difficult to get ahold of, let alone an appointment. I not impressed with this game she started on my last appointment and am quite upset. This disease need to be nipped in the butt and controlled to avoid permanent joint damage and the intense pain when comes on is not to be played with, spending 80-90% of my life non functional and angry. I don’t know what to do and ready to give up trying.
I was diagnosed with lupus and sjogrens disease. I have gone to a holistic Dr that has helped with the deficiencies of vitamins and hormones levels which I now take all those vitamins and hormones and do a antiflammatory diet which all has definitely helped with symptoms and blood work. And recently started CBD oil which has also helped alot with inflammation to function alot better on a daily basis
I saw a Rheumatologist after a positive ANA test and after four joint/replacement/fusion surgeries and much pain and fatigue etc over about 6 years. By the time I saw the specialist doctor, my symptoms had mostly subsided. He didn’t really seem very interested. His few blood tests he ran were normal. He told me if a rash occurred to see my dermatologist. My dermatologist, my chiropractor, my psychiatrist all have told me to follow through with another doctor. I was wondering if the blood tests came back ok and The tests were conducted when I wasn’t in a “ flare up” ( new term for me) that the bloods test may not show autoimmune disease eventho I may have one? Can that happen? I also have other symptoms such as laryngitis from GERD, a tie fungus, hair loss, weird skin things and rashes, heat intolerance etc.
Ellajean, thanks for sharing your story. We can’t provide medical advice on this blog, however. You’ll need to see a rheumatologist, and it sounds like a second opinion might be an option in this case. Best of luck!
I have been to many doctors and had lots of blood work and they all say i have Osteoarthritis or fibromyalgia But i just know something else is going on. My ankles and feet are so swollen and painful for almost two months now. My knees are so painful for about 2 years. I have some good days but usually it’s bad. My hands have their days where they can’t close. And my back and neck is beyond painful. But doctors almost make like i am crazy. I am 36 years old. I used to take pain meds and they always made me feel like I just wanted drugs. I don’t take them anyone because they stopped helping and still no answers, no help. I want to crawl in a hole most days. ☹️☹️
I have cutaneos lupus erythomesis. I had a skin biopsy in February 2018. I then had a positive ana 1:320 for homogeneous and 1:320 nucleour antibodies. I have cold hands and feet and terrible joint pain and fatigue and shortness of breath . I also have hypothyroidism and low vitamin D I’m on medicine for. I take plaquenil for the lupus. My hands began having bad cramps liken to muscle cramps.December 2020 My rheumatologist decided to run more labs to be sure he was not missing anything. Antisclerederma 70 test was positive 2.5 sohe prescribed methotrexate to help symptoms, but no diagnosis. So I’m left in limbo until appointment in April
I have had several flare ups of joint pain and swelling all over. It is most severe in my knees, elbows, ankles and fingers. The mornings are the worst and I can barely grip my toothbrush. I have been tested and have positive ANA with I titer of 1.80. But, all other tests have been normal. I have writing down other symptoms and changes I’ve noticed. Extreme fatigue, weakness, dry eyes (I can no longer wear contacts), long periods of bloating. So far, I have no answers. I am a 46 year old female and I feel like I’m 90. I am waiting on another visit with my primary care doctor to go over the next steps. I just want to know what it is so I can work to, at least try to control flare ups.