Aa
Aa
A
A
A
Close
443434 tn?1255891233

Positive ANA Swelling in Hands, Ankles, Knees, Wrists

I will try to make this short and I appreciate your thoughts. My problem started last year, April 12th, 2008 to be exact. I woke up with swollen hands and feet, ankles, wrists...which got really bad over the next few weeks. The only thing that happened prior to this was I had some Thai food, hour after I ate it, my ears blocked out for the entire evening until the morning. Then my lips were swollen a little for about 3 weeks, that went away and then the other swelling happened. Went to the ER. They ran EKG, tested for RA, Lyme, ANA and Lupus. All negative, but said the ANA was positive. This was at a hospital while out of town, I wasn't near my local Doctor.

When I arrived back home, went to my Primary Care Dr, and he flipped out. Figured there was some type of blockage and ran a lot of tests, X-rays, sent me to get CT scans, sent me to get ultrasounds...all negative. Blood work for RA CCP IgG Antibodies, Lyme AB/Western Blot Reflex, Lupus, Hepatitis HBV/HCV, HIV, Epstein-Barr, Parvo virus B-19, CMV Ab IgM, CMV Ab IgG, thyroid T4 & TSH, Uric A + RA Qn, Comp Metabolic Panel, Anti Nuclear Antibodies Direct. My Doc was stumped, didn't know what to tell me. Said I'm getting older. Told me I looked good and basically that was it. I didn't feel good, I know that. My PC Dr sent me off to a Rheumatologist, who put me on Prednisone and Hydrocholizide. He ran all the blood work again, several times, this went on for a year between all these Dr's and tests. He said positive CMV virus, but the way he was explaining it, I couldn't tell if he was saying it was current, past/prior... he wasn't very clear on this and seemed annoyed with me wanting the test run again the last time I was there.  I never went back after that. In the end, my Rheum Doc wanted to put me on Methotrexate. NO THANK YOU. If I'm on my death bed, then you can give me that.

It has been over a YEAR now.  I'm at my wits end and the Dr's don't have an answer.  I'm in pain and I'm really losing hope.

The problem I was having was the severe edema, very painful, hard to even hold a pen, open a yogurt lid, much less a bottle of water. MY joints hurt, mainly hands, wrists, ankles, feet, knees and I felt weak.  My strength is not like it was.  I'm a 5 days a week at the gym kinda gal. Well, I'm tired of the swollen feet and ankles, it hurts, tired of my hands being swollen and hurting. I had so much fluid in me, it was painful to drive a car. I ended up ordering a hair analysis, so desperate for answers.

I'm still waking up with hands very swollen and achy all day,and joint pain.  My knuckles on my hands are starting to look deformed from the inflammation going on inside me. My fingers are like sausage links. If this doesn't get resolved, it will turn into RA I am sure of it.  Any help, tips, thoughts I will appreciate so much. I had the Enterolab Tests done for Gluten Sensitivity:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA: 12 Units

Fecal Anti-tissue Transglutaminase IgA: 4 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 7 Units

HLA-DQB1 Molecular analysis, Allele 1: 0301

HLA-DQB1 Molecular analysis, Allele 2: 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)

Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA (Normal Range is less than 10 Units): The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score (Normal Range is less than 300 Units): Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow's milk) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

So, is the Gluten Sensitivity causing these joints and swelling or is it CMV? I still have my Prednisone and I'm thinking of taking it again to bring this joint swelling down and stop any further joint damage, as pain is starting back in my shoulders and hips again.  I have an immunilogist I can try to go see...do you think he can figure out what is causing this?  I'm so desperate for help and relief.  I want my life back, my happy self back.  Please help

THank you
12 Responses
Sort by: Helpful Oldest Newest
Avatar universal
If you have no diagnosis after repeated x-rays and tests, please consider Fibromyalgia with Chronic fatigue Syndrome. I have it and have horrible pain and fatigue that is overwhelming. As a Dr. I knew what it was. I had a really bad viral illness in my residency and it started after that. It wasn't constant till we had two adopted teens run away. That day was the beginning of Hell. Initially, Cymbalta helped a lot. Over time the pain wears on you and Dr. added Wellbutrin. That made some of the pain tolerable but the fatigue drove me crazy. I was a really high energy person and not being able to ride horses and garden felt like life wasn't worth living. We tried Cytomel, which is a Thyroid medication because there are medical articles saying some people with normal thyroid tests, respond. It did help with energy but my Internist goes nuts because it doesn't fit in his narrow mind LOL I don't care. Hubby and I are both well educated Drs. We researched Ketamine during a horrifically painful episode where my elbows and wrists were so painful I wanted to die. My bones felt like they were coming through the skin and I couldn't even lay to sleep. I am lucky to have a psychiatrist treating the condition who is also a Phd and researcher. Ketamine is usually used IV and is very expensive, due to being monitored while IV is running. We asked him to call a compounding pharmacy and have them compound the medication in a sublingual pill that dissolves and is absorbed under my tongue. The pharmacy calculated the amount to keep the rate up in my bloodstream for 7 days. After 5, I got the flu, and had to go down on dose. However a miracle happened. 100% of the pain was GONE! Since the Ketamine makes you sleepy I found that I could be maintained on 2 pills about 4 hours before bed and another 2 at bedtime. If pain is bad during the day, I'll sometimes take 1 or 2 during the day. It has changed my life! The other thing that has changed my life is Modafanil for the chronic fatigue. Insurance won't approve it unless the diagnosis is, "Work shift sleep disorder" but fighting to get them to approve it is WORTH IT (or you can buy from overseas without prescription as Provigil, but most places require bitcoin)! I can actually stay awake for the day and it is not addictive and literally has not one side effect. The only medication our research shows might help more is Xyrem. It was trialed for Fibromyalgia and Narcolepsy but the gov. only approved for Narcolepsy. Studies showed over 80% of Fibromyalgia pts had dramatic improvement. Problem is it is regulated (unnecessarily IMHO) more than any drug we've ever seen. The fact that Fibromyalgia responded so dramatically makes sense because Fibromyalgia pts are KNOWN to have a sleep disorder. Lack of sleep produces every symptom of Fibromyalgia and Chronic Fatigue Syndrome. Thus, you might benefit from having sleep studies and being diagnosed as "Narcoleptic". I've been doing well on the Ketamine, so I haven't pursued the Xyrem (also known as GHB), but I am certain with my inability to sleep that it would help. I hope this helps someone....
Helpful - 0
Avatar universal
I have the same swelling... I think mine comes from allergy to iodine. I had a bad reaction to a test in the hospital that involved iodine. I get the inflammation now whenever I eat foods high in salt.... Asian foods, restaurant foods, bread and other heavily salted items such as deli meats, pork and chips of any kind. Sea salt does not affect me the same.   Food sensitivities could be anything.... I would advise you to keep a daily food diary and note what you eat right before inflammation flare ups... Then test your theory by avoiding that food....or repeating it to see if it affects you again. I can tell when I have had too much salt because my left ankle flares up first. Hope this helps.
Helpful - 0
Avatar universal
Kinda of an odd question do you happen to have psoriasis or dry patches on your face or body?
Helpful - 0
Avatar universal
Have you had your adrenal glands checked? I have had the same exact symptoms as you described and the only way I could get help was to seek out a naturopathic doctor. She ordered a saliva test which showed that I have a sensitivity to gluten plus my adrenal glands were depressed. After treatment, all of the swellings in my hands, wrists, knees, ankles, etc started to go away.
Helpful - 0
Avatar universal
Find a good rheumatologist and ask about Sjögren's syndrome. The symptoms seem to fit and it is often misdiagnosed for years. Good luck.
Helpful - 0
Avatar universal
Have you received any more information?  I too have the same exact symptoms as you ant the original poster and no one or no test will answer what i have! I can only get relief when I'm on Predisone! This is not a way to live life!  I'm normally a physically active person, in decent shape and healthy up until this happened!  
Thank you!
Kim
Helpful - 0
Avatar universal
I have had all of the same symptoms you have for the last 2.5 months. I have celiac & have been gluten free for last 5 yrs with total recovery of gluten problems. I know that I am not ingesting any hidden gluten. I don't eat out. My symptoms were sudden. I have been to 8 specialist and they all say this is systemic but don't know the cause. They all hinted it could be a hidden tumor. Have had ct scans, mri's, numerous blood work, emg studies and still no answers. Even went ti infextious medicine. He thinks that my hemotologist should order a PET Scan, but that insurance may not approve it. Thinking of going to Mayo Clinic. Can't continue like this with constant pain & swelling. My body has aged 20 years over night. Waiting for dr to schedule brain mri. Wishing you the best.
Helpful - 0
Avatar universal
If you have a persistent CMV infection - it can be treated with antivirals.  CMV can cause a whole range of issues including inflammation.  The trick is to find an infectious disease doc who understands it - there are not many around.

I had/have a CMV infection and the only thing that works for me is following a very strict diet:  No wheat, eggs, dairy, tomatoes, caffine or beans (essentially what is called the German MS diet).

I have yet to start antivirals - but will probably do so in the next few months...

Helpful - 0
443434 tn?1255891233
Hello,

I've been on it the diet, but yes have slipped a time here and there, with not knowing certain things had gluten in them.  I went to the Rheumatologist for over a year though and he basically told me he didn't know what else to say/do.

It's so frustrating to keep going to Dr's with no relief in the end.
Helpful - 0
483733 tn?1326798446
Be careful that you are really gluten free.  I did a one month trial a bit ago and was frustrated to find out that some things I would never had even suspected (i.e., popsicles) had gluten in them.  Since you've been on the diet, and since celiac or gluten sensitivity often runs hand in hand with many auto-immune diseases, I think you should pursue additional testing with a rheumatologist.
Helpful - 0
443434 tn?1255891233
Hi Trudie, thank you for the reply.  

I have been gluten free since around May 2009...haven't noticed too much difference yet. My hands are bigger and joints are swollen more in my hands than before. I'm guessing that is becasuse the inflamation has been going on for over a year now. Feel so lost.
Helpful - 0
483733 tn?1326798446
Hi there.  The simplest and the best thing for you to do right now is to go on the gluten free diet.  You will start to see some relief in about a week but will normally take about a month for the gluten to get clearing from your body.  A lot of your symptoms can be attributed to the gluten.  It is very important that you get on this diet to protect your health.  Then it will be easier to pinpoint if you have any additional issues.  There is a Celiac forum here on MedHelp.
Helpful - 0
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.