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
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.
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.
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.
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.
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...
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.
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!
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.
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