Positive Ana, Positive Gluten Sensitive, Swollen Hands and Fingers

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

[CalGal]

Gluten could very well be the problem, but the only way to know is to go gluten-free and see how you feel. If going off of gluten doesn't change things (although I think it will), see the immunologist and continue trying to figure out what's going on.

You'd be surprised at what strange/unusual symptoms can result due to gluten.

[GS712]

Hello, thank you for the reply!  I've been doing the GF since about May 2009. I've noticed a little difference, but hands seem worse.  I think they are worse due to the contstant inflammation inside me.  Which I'm afraid is going to cause a lot more damage if not treated soon.  I slipped a little at the start of GF and other times didn't know gluten was in certain things...I haven't completely stopped dairy, since my test for dairy was below, and I use Silk on my cereal in the mornings with GF Honey Nut Chex.

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.

[CalGal]

Are you sure that every item you're eating is free of wheat, rye, barley, oats, malt etc? In my husband's case we've found we've had to read each and every label to make sure that even things that are labeled gluten-free are, in fact, gluten-free.

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?

[whiteorchid]

I have very similar symptoms as you, only I don't have them as severe.   I have thyroid disease (hashimotos) and my hormone levels are very low (estrogen) but the joint pain is a new symptom since going through a very stressful time.  I have also cut out gluten and notice great improvement.  I wasn't as strict as I could be, so I've only been very strict about for about a week.  I notice my joint pain gets worse around my period (I'm assuming it's because estrogen at its lowest).

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.

[GS712]

Hello,

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.

[breckgal91]

I just read your post from Nov 2009. My right hand and several fingers suddenly swelled up 3 days ago. Like sausages. Doctors have been doing tests on me since Jan 2007 - dx is gluten sensitivity, idiopathic sensory neuropathy, inflamed joints. I'm in pain nearly 24/7. Your email flagged some of my more serious concerns. Have you found any answers in the past year?

[GS712]

Hi,

Thank you for the reply.  Nope, still suffering and still being told that I look fine or that the swelling is not significant....the last Dr I went to told me that. I literally could have punched him,  I'd like to see him get up and go to work everyday with the swelling and pain.  Nobody understands unless they are dealing with it themselves.  He was the last Doctor I saw at the moment. He made me so mad. They ran all the same tests...AGAIN.  I just want my life back :(  Hope you are feeling better :)

[Jleehing]

ok so I am reading your story and mine is sorta similar but not as bad as yours. But I am also a little annoyed at my situtation because you know something is wrong with your body and no one can tell you what it is. Well long story short. First time they did blood test about a month ago I had a positive ANA exam of 1:160. So they ran more blood work to try pin point what it could be. Yesterday doctor told me everything came back negative and now my ANA is now 1:140. So I ask him what does that mean. Tell me something. So he basically told me I have a undefined autoimmune Disease. That makes me so uneasy. So he put me on this medication ( this is the rheum doc) to help with the joint pains. I am also having major chest pains which he had me get xray for to see if I am having lung problems or heart problems. But I am 29 and this has to be the worst year ever. I have never felt like this before. I know something is wrong and I wish someone can answer. I have seen so many doctors and none can give me a answer. So I know the feeling. I just want the pain to go away.

[Pingupingu]

Hi!
I had to google the symptoms that's been causing me pain for the last 6 years and I stumbled across this page were you guys describe similar symptoms and pain as myself!

I have problem with my joints- fingers, wrists, toes, shoulders, ankles, you name it. They tend to swoll and hurt so bad that i sometimes can't walk or grab anything with my hands.
I've been to the doctors and they say that all of my bloodtests are negative except for the ANA that's positive. The doctor told me that my problems are stressrelated and that I should try to take it easy and not stress all the time. I can't help but feel neglected and wrongly treated!!

[AlisaLara]

Sounds word for word like Chronic Lyme Disease. If it is, you'll need an LLMD doctor. The tests your pcp type docs will run will not help you because Lyme only briefly stays in your blood, within 72hrs it will leave and merge in your tissues joints brain and other organs... So you'll be told your negative for Lyme when in fact your body is ravaged by it. All Lyme sufferes have severe allergy to gluten too... I beg you from my heart to research this, I wouldn't be here today if I hadn't and my story started just like yours... Lots of love, alisa

[GS712]

I hope you are feeling better now.  What did the Doc put you on?  I never liked the Rhuem doc I had. Tests are negative yet he only wanted to put me on meds.  I did the Prednisone thing...which was the only thing that helped.  Four times on it.  

My hands are able to close now, and the one new thing that I have been doing this year is bragg's organic apple cider vinegar, 2 tablespoons in 8 oz water in the morning and another in the evening.  Hard to get used to at first, but now I love it.  I know for a fact this has reduced my hands and kept me off the Prednisone.  It reduces inflammation. Hope that helps someone.  I read a lot about it and then saw it in my local Kroger store with all the health issues it helps clear up and I thought I'd give it a try because I have tried everything else. My ankles are still puffy on both sides, you cant see the bone...but my feet are normal.  I want the Docs to drain my ankles, to see it resloves that issue.  I know it will.  I just have to find a Doc that will give this a try.  They keep wanting to do a tissue sample instead, which is so much more invasive and would have me on crutches!  Why not try the less costly one first? lol This new Dr thinks it could be Sarcoid.  I don't agree.

[GS712]

HI! Glad you found my post!  Sounds like the same issues for sure!  I was always active and working out so I know there is somehting going on and it's so frustrating when Dr's look at you and act like it's nothing.  

Have you tried the Gluten test?  Through Entrolab?  Curious if it will show gluten intollerance. Stress will cause major problems. Like they say...stress kills.  I have had major stress since 2008 that's for sure and have been trying to de-stress. A lot of the stress comes from the Docs taking all these tests, over and over and still having no answer.  That is very stressful. lol

[GS712]

Hi and Thank you Alisa!  They ran the regular lyme test so many times and I would ask if there was another test, because I heard there was but I wasn't sure of what it was called. They always told me the test they gave me was the most accurate! lol How are you feeling now?  How long did it take before they figured out what was wrong?  I will check for an LLMD doc. I don't have health insurance right now. These last 3 years have wiped me clean with insurance costs and the copays and the 80/20% payments...the doc bills mounted and I could no longer afford the policy on top of my portion of all these visits, lab work, tests.  

I hope you are feeling much better now.

[jen274]

Hi I have exactly the same symptoms as you been everywhere and thouroughly tested only have positive ana. and low alkaline phosphatese
I had multiple vitamin and mineral deficiencies I had been treating myself with mega doses of vitamin B and seen vast improvements but was still not there so saw a nutritionalist who did some tests and found I had low zinc and magnesium as well, I am a lot better my hands are still swollen on waking and I cannot make a fist but this resolves quite quickly then my hands are ok during the day my feet are still swollen on back of ankles but much better.there is definately something with digestion it doesnt seem to be gluten as such with me but solid meals ive noticed if I only eat meal replacement shakes everything gets almost better, my theroy is they are easier to digest and full of vitamins but have not been able to stick to this as so hungry, digestive enzymes and pro biotics seem to help as well.
jen

[GS712]

Hi Jen!

I have noticed that same thing.  I've had times were I was really trying to cut back on what I was eating due to the extra weight I have from being on the Prednisone last year.  It put 30 pounds on me!  When I cut way back, there is less swelling. So there is something else that I am eating that is causing a problem.  I think it's Dairy, as my Dairy was on the higher end for the Entrolab Test and I've decided this past weekend I'm cutting all dairy to see if it reduces the ankles as my hands have been fine. Have you tried organic apple cider vinegar? That's when I noticed a great reduction in my hands, when I started the vinegar drink. I use Bragg's. I've been drinking it since January and I will continue to do so and the health benefits are amazing. But, if you read on Dairy & Casein allergy...it lists swelling, swollen feet, swollen ankles, sore joints, achy joints, joint stiffness, artritis.  So it is worth a shot!  I'm cutting the dairy!  I already use Coconut Milk for coffee and cereal and anywhere else I would use milk, margarine I use earth balance, so I really only have to find a substitute for cheeses.  Let me know anything you do/try and if it helps you!

Write Soon!

[jen274]

Hi thankyou for your reply, This all kicked off for me last august so its been a year now I wish this would just go away I am much better but still there are these lingering problems, im glad your hands are much better, ive now figured out that the shakes were helping because of the protein content if I eat only protein my hands are much better. Even if the calorie content is really high I can eat a block of cheese ok so dont think its dairy with me, but if i eat any carbs my ankles swell more and i wake with stiff hands. It is definitely to do with digestion but I dont feel I am intolerant but am lacking in certain nutrients needed to digest it. Have you had any vitamin bloods done at all? have you had any other probs besides the edema I had quite a few more but the edema was the worst ive had trouble with my
Vision (not as bad now helped with vitamin A and Bs)
Heart (fast heart rate) (resolved with Bs and potassium)
Cracking joints even my jaw (resolved with Bs)
Excruciating pain when knocking any joints even lightly (resolved quickly with Bs)
foot pain (not as bad now)
Dry Skin and hair
Itchy skin
Swallowing issues feeling of lump in throat (resolved with magnesium)
loss of taste and smell (resolved ? zinc)
Feeling of tickling skin on legs like an insect running on them
Muscle wasting of legs as I could not bend knees for 7 months
and Dreadful cramp from foot all the way up to my thigh (resolved with  B vitamins and magnesium)
I have tried the apple cider vinegar when this all first started but didn't seem to help me at all ive never had red or hot swelling and anti inflammatories have never helped so I think thats why it didn't help me as it doesn't seem to be inflammation as such just fluid. Im going to carry on with the high protein diet and see if it all resolves (fingers crossed)
P.s The worst thing I have ever tried was diuretics this was when it first started,
they seemed to help initially but it came back ten times worse I stupidly tried them again last monthy as I felt I was much better and thought if I could just clear the last bit of swelling maybe it wouldnt come back Big mistake my swelling came back much worse.
Hope you continue to improve with the diet changes it sounds promising :)
Jen

[WilkAustin]

I too am a double DQ3, tested by Enterolab.   I may be able to help you.  What is your direct email?  I have multiple intolerances, learned via IgG antibody testing.  After 100% elimination I am finally healed of many issues.  
Jeanne In TX
10/2011

[GS712]

Hi Jen,

How are you feeling? Are you still taking the shakes?  I want to try that as well. Have you found a shake that you feel "full" with and not hungry in an hour.  I'll have to find one that is Gluten Free.   Good to know you don't have the dairy allergy.  I don't think my dairy is a huge allergy, but I keep testing it and if I stay away from dairy for a few days, and then try it again, it get the bloating and stomach pains again. I'll have to really try this shake idea because I eat a lot of carbs. lol  .  I haven't had any vitamin bloods done.  I need to.   My other issues I have noticed are the swelling/edema and ...some of the exact issues you have...
Heart (fast heart rate at times)
Cracking joints
Excruciating pain when knocking any joints even lightly (OMG-unbelievable pain)
Itchy skin
Swallowing issues feeling of lump in throat
Feeling of tickling skin on legs like an insect running on them

Yeah, the diuretics made me tingle in both arms from my shoulders to the tips of my fingers.  It was horrible.  Stopped the water pill and the issues stopped right away.

Hope you are feeling better and let me know if you found a good shake mix :)

[GS712]

Hi Jeanne,

What info did you find?  Maybe if you post it here, it can help others too :)
Please post :)

Thank you!!

[MrsBragg62211]

I'm having the exact same problems now. Unfortunately I am only 19, and I cannot get relief. I've had these issues for a little over a year. ANA pos homogeneous 1:320. Neg arthristis thyroid and lupus. Chest pains pulse sits at 100+ and my BP is typically 160/45. I'm at a loss. Have you noticed anything that helps?

[jen274]

Hi hope you are doing ok, I am doing much better Im taking Lipoic Acid which I LOVE definately helping to get me back to normal since starting it Ive got better and better I take 100mg with my B vitamin in the morning  magnesium with lunch and 200mg of lipoic acid with my zinc in the evening. I seem to be able to absorb them better with it.
but if I dont take these for a few days I start to go back my hands start to gunch and crack and my vision deteriorates.
I do not swell now when i eat, so can eat anything which is not so good as i have put a lot more weight on :( but am really much improved.
I would not be without the lipoic acid I think this has been key in getting better. I still have some swelling in my ankles but it doent get worse by the end of the day just remains the same so I am hoping it will resolve completely if I carry on this regime,
I know what you mean about feeling hungry on the shakes unfortunately I havent found one I feel full on but must sort out my diet as I dont want to put any more weight on. How are your hands? I found mine were swelling because of my zinc deficiency the more zinc I took the better my hands would be I have not found swollen hands listed as a symptom of zinc deficiency but this was definately the case with me now I only need to take one tablet tho as long as I take it with the lipoic acid.
How are you doing now has avoiding dairy helped?
Jen

[mvaf]

I advise you to contact the NATIONAL INSTITUTE of HEALTH in USA even if you are not American.They accept all the rare undiagnosed cases from allover the world and do every effort to diagnose them for free! and even the patient's stay there is also for free! { in order that the INSTITUTE accept managing your case your doctor have to contact them and ask their consultation.I don't know the exact machanism for this contact but all I know it is not difficult and you have to do your best to have their help} I do have 2 relatives went through that and was diagnosed and are very greatfull to that INSTITUTE...May God cheer up your heart..I know how much diseases are sometimes frustrating as I have Crohn's disease..but I thank God now very much.because I didn't use to talk to God while I was completely healthy & strong! and thus didn't  realize how much HE loves me & taking care of me.but since I become ill I found myself talking to him asking his help and support and HE has never let me down..Only now I do believe He is present..and enjoy being under His care...Smile God loves You..Trust that...(Mary Victor)

[Rigs3319]

Hi,  I found your posting November of last year when I was going through same problem.  I was bed ridden for most of the time due to edema.  I am very good with alternative cures and when I find the solution I was going to contact you.  About a month ago I was finally successful.  Now I am cured back to full activities and trying to figure out the final method to be at 100 percent.   My edema went away the first day I took the supplement.  My muscles were still very sore and stiff.  I am trying many things to finally get back to normal.  I am having some success. Now I am back to bowling 5 hours a day at times and walking 5 miles a day.  Because my posting is so long it will take weeks to finish.  But I wanted you to know you were in my thoughts and will post the item to purchase to try.  Will post as soon as I can.  John. R.