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Positive Ana, Positive Gluten Sensitive, Swollen Hands and Fingers
by GS712, Nov 04, 2009 05:05PM
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
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
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You'd be surprised at what strange/unusual symptoms can result due to gluten.
I've read Edema occurs because there is an underlying issue. I;ve never had edema until April 2008, and haven't been able to get rid of it since then.
If you're positive you've been GF, then it's time to look for another reason that is contributing to the problem. If you've removed milk, have you take out all dairy - every form of it?
I just had testing done and I'm awaiting results. My doctor told me you don't have to have "celiac" or stomach involvement to have gluten intolerance -- it can affect the brain and joints as well. My ANA is also positive but all other tests are negative. He said where this is smoke there is fire...best to try cutting out gluten. Casein can also cause problems for a lot of people.
Gluten is hidden in A LOT of foods. Watch out for barley, wheat, oats and rye. I noticed you had symptoms after eating thai food. Also watch out for MSG and gluten hidden in soy sauce.
Good luck and hope you find some answers soon.
Thank you for your comments! It helps a bunch. I'm sure I've had gluten and have not been aware of it. I'm a newbie, so learning..LOL
Ive been so hungry recently and didn't have anything GF in the house to eat...I slipped again by eating Gluten. My knees swelled up as big as grapefruits and I can barely walk, much less get my legs into a car, my knees are too big to bend. 5 days now of this and I hope it goes down soon. I went back on the Prednisone on Nov 5th...I couldnt take the pain any longer. I did find this the other night http://www.city-data.com/forum/health-wellness/274542-fifths-disease-adults-5.html
It sounds identical to what I am going through. Makes me wonder if it's both, Gluten and Fifths.