swollen knees dependent edemas

[Lisa Purcell]

My ankles and behind my knees are swollen. My doctor said it is called dependent edema. She thinks it is due to perimenopause.  I find that hard to believe. Since seeing her, my knees have developed a burning sensation. I sometimes get sharp pains in them when I stand.  At times, it feels like my legs are trembling. My right calf is painful. I could actually feel my left kneecap twitching with my hand yesterday.
She has me resting, ice, elevating, and taking Naproxen for them.  They grow more swollen. Right now my left knee cap feels like it is burning. That is a change, I have been feeling a dull ache. My knees have also started popping.
I called my PCP to report the pain and she said to do the rest, ice, elevating, and Naproxen for two weeks and if at the end of that time there is no improvement then we can do physical therapy and then an MRI.
I feel like she is blowing me off. They didn't hurt when I first saw her. I think she thinks I am making up the pain in order to get an MRI done.
I am not. They continue to swell despite doing as she has said.
I think she is way off base with the perimenopause diagnoisis.
I don't think she believes I have Celiac Disease because she did not diagnose me. She is new to me and me to her.  Anyway, if anyone could tell me if they have had a similar problem I would greatly appreciate it.

[Maggie C]

Yes! I had so much edema on my calves &legs. Went to see 5 different docs & specialists & no one could figure it out. CT scans, EKGS, ultrasounds.. & numerous labs.. All normal.  But after 2 weeks of going gluten free( tested negative for celiac ) most of the edema went away. Corn is  the other thing that make me swell up. If I eat corn or gluten I swell up again. Amazing !

[Lisa Purcell]

I have been gluten free since July (I have been "glutened" several times but I am trying). 
In December my lymph nodes swelled up, my nails turned red (I am told that is Raynaud's), and then my knees and ankles started swelling.  The lymph nodes are resolving themselves. The knees and ankles continue to swell and then now are starting to hurt, etc. as I described above. I noticed yesterday that the skin on my ankles has small red discoloration (hard to see in the photos).  I have a new PCP. She wants to blame perimenopause. 
I was worried it had to do with the Celiac Disease, some associated auto-immune disease acting up. I hate to even call back to tell them that it is more swollen, more painful, more achy. With burning sensations. I am afraid that she will think I am overwhelming or a hypochondriac or imagining it all.
Good to know that this can happen and not be something serious. It is hard to imagine why I would be swelling now since I have been gluten free for several months but maybe getting glutened did this. It has been weeks thought that they have been swollen. Anyway, thank you for your response.

[SLLRunner]

Hi Lisa, 

Didn't you have your medical records sent to your new PCP?  If you received a celiac diagnosis from another doctor, she would be able to see that.  I suggest sending your medical records to the new doctor if you have not already done so.

That said, can you look for another PCP?  I would personally be uncomfortable with one who questioned a autoimmune diagnosis given by another doctor.

Edited April 4, 2016 by SLLRunner

[bartfull]

Keep pursuing this. It's not normal and you need to get to the bottom of it ASAP. We kept goofing around with antibiotics (at my own insistence.) until it was too late. I'm not trying to scare you. It might very well be a bad infection, but mine turned out to be cancer.

[Lisa Purcell]

I don't think she got those records yet. I really had a time getting diagnosed. My old PCP  thought that I was menopausal. When I insisted something had to be wrong (I was getting short of breath walking downstairs for instance) he added that was my age.  He did order testing, however.
He sent me for an FSH test, to a hand specialist who ordered an EMG, and to a rheumatologist.  The gynecologist saw my rashes and something clicked and made her suspect Celiac Disease. My old PCP did not want to do the testing. I let the gynecologist do it and I had her send those results to the PCP. They are not among his records according to the new PCP. He just has Celiac Disease (confirmed) in my records. I signed a release to see if she can get the records directly.
At any rate, the new PCP is going through perimenopause herself. She was reading the old PCPs notes. She seemed to give great credence to his theory about perimenopause.  I am sure she agrees with him because she herself is suffering so much with her symptoms that she is going to be out getting a hysterectomy. I tried to point out that he missed so much that was actually wrong. That since he told me that I was merely old, menopausal, and anxious (who wouldn't be at that point); testing has revealed Celiac Disease, Ulnar Neuropathy,  another spot with arthritis, carpal tunnel (which I knew I had but which the EMG revealed). 
To hear her laying the new stuff on perimenopause really bothered me. Incidentally, she says I have Raynaud's.
I wrote a letter to my family who have made tremendously unhelpful comments while I navigate all this.  My sister said, "I went to the link you sent me and it said Celiac Disease causes 300 symptoms. I don't believe anything can do all that." My dad said, "I was talking to your sister and we think you didn't have any of these problems when you used to eat meat."
So, I wrote a letter to explain this whole past year and the diagnosis and how it was arrived at, with better links for them. It laid everything out in a concise, linear form. I sent my PCP a copy because I think it will help her understand. I also asked the gastroenterologist to explain to her why I can't just go on in there and have an endoscopy done while he does my colonoscopy.  To explain what a "Gluten Challenge" is. By the way, his office was confused as to why she would even want to do a biopsy when I already have this diagnosis. She told them she was unfamiliar with the doctor who diagnosed me.
I have a long, weird medical history but when seen through the lens of Celiac Disease it makes sense. The diagnosis was spot on in our opinion and in the opinion of two previous PCPs. Even the jackass that didn't want the testing now concurs.
Anyway, I made remarkable gains until I found a lump in December. My stepmom used to be a nurse. She thought it was a hernia. I went to a walk in clinic. That doctor said that the lymph nodes in my groin, pelvic, arm pits, and behind my ears were swollen. He called this Diffuse Lymphadenopathy. He wanted me to go to my PCP. 
Obviously, I didn't want to go back to the first PCP so I went to a different PCP. He thought I had Sarcoidosis. He ordered a chest x-ray, spirometry test. He raced me off for the chest x-ray because of the swollen lymph nodes and the breathing. I had also lost weight since the Celiac diagnosis. (By the way, he is the doctor that said I did not need to do a biopsy, that the gynecologist had nailed it, that the way she tested me was spot on - antibody testing and gene testing).  He decided I had asthma.
I replaced him because he reversed himself from visit one to visit two to visit three and asked me, "Who told you your lymph nodes were swollen?" I told him he had, the walk in clinic doctor had. Told him he needed to check his notes from visit to visit and I left.  I didn't even get the inhaler. It was mind boggling to be told one thing and then to have him reverse himself and then reverse himself again.
So, I got a new PCP. She gave me an inhaler. I feel like I can breathe now. So, that was good. She agreed it was asthma.
My new doctor does not think the lymph nodes are tied to the swollen knees and ankles (despite all of this happening since December). Even my nails turning red is new. She thought my nails turning red and my hands being so cold and my skin discoloration is Raynaud's. She feels that all my underlying conditions are taking a hit by the perimenopause and that perimenopause is actively causing some symptoms.
Sorry, I wandered there.
My cousin had lymphatic cancer and she thinks my symptoms sound like hers.
Sorry this is so long.
The last two PCPs and my husband and I are sure the Celiac Disease was correct.
What I worry about is that this new PCP, my third this year, is wrong about the new symptoms being perimenopause. I may have to move on. I am really not sure what to do.  I don't know whether to go back to that walk in clinic, be seen by another provider at the same facility.  My new PCP ordered blood work but wants me to wait to have that done until she is close to returning. I see her again at the end of May.
Anyway, thanks for your advice. 

[SLLRunner]

Lisa,

Thanks for sharing all that.  It seems to be there is a whole lot of disbelief in from your PCP and some of your family regarding your celiac diagnosis, and a whole lot of you trying to convince them it is accurate.  The bottom line is you have celiac and you do not need to justify it to anyone. It is what it is.  Your health comes first.

I would keep pursuing this until you get answers, and I'd also start looking around for a doctor who is well versed in celiac disease.

[GFinDC]

Hi Lisa,

If I read right, you are dealing with:

some kind of arthritis ( a spot of it )

possibly dermatitis herpetiformis (celiac associated skin rash)

Raynauds Syndrome

perimenopause, possibly.

celiac disease

I can see where the symptoms for these different ailments could be a little tough to separate for the doctor.  If you do have arthritis, a rhuematolgist may be able to help.

In the meantime, you could try some diet changes like eliminating dairy, soy, and nightshades.  Just in case there is a dietary component to the symptoms.  You could also do an elimination diet or get food allergy testing to rule that out.

Maybe reading up on the various symptoms of those conditions will help some.  There is a section of the forum for dermatitis herpetiformis (DH) with lots of info.  I assume you might have it because your doctor tested you for celiac after seeing your rash.  The Mayo clinic site has info on lots of conditions that might help.

http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/symptoms/con-20022916

 

 

[Lisa Purcell]

I had a rash on my eyelid today. I went to a walk in clinic. Some good news. Doctor thinks it is only a stye.
While I was there I had her take a look at my knees and ankles and told her about my new PCP saying my swollen knees and ankles are from perimenopause. Nope. No, they are not. She feels they are neuropathic. She said I need to have a heart to heart with my PCP and make her get to the bottom of what is causing the neuropathy. She went on to say that if my PCP does not hear me I need to find a new PCP. She thinks I should give her a second chance since I like her so well. So, I will. She is out having a hysterectomy so I will have to wait until she gets back.
Honestly, it was a relief to have her tell me something is wrong. I knew something was wrong. I knew it wasn't perimenopause. It was just about this time last year that a doctor tried to tell me it was perimenopause and age that was causing my shortness of breath, joint pains, rash, etc. and so on. My birthday is tomorrow. Happy Birthday to me. Anyway, I am finding the humor in it already. We were laughing at the doctor's office. I almost peed my pants. I know, maybe something in my brain slipped a little, but that is okay. With my sense of humor there is nothing that can beat me down. And, today, I found my sense of humor. I don't know why. Something about having someone hear me I guess. 
Someone above asked what else is going on: In addition to rash (which I think is the DH Rash). Celiac Disease, Degenerative Disk Disease, Osteoarthritis in my left foot, my left thumb joint has arthritis and needs an implant at some point, my right hand has arthritis, Raynaud's, Ulnar Neuropathy (I am told I need surgery), carpal tunnel syndrome, TMJ disease or syndrome (I do not recall which term they used), asthma, periodontal disease, dry eyes, night blindness, fatigue. OMG fatigue. Joint aches, muscle aches, constipation, menstrual problems, etc. I just know I am leaving stuff out. Brain fog. I have been depressed, anxious. Many, many of my symptoms have improved since going gluten free. Some are entirely gone but most are limited to a dull roar. The rash comes back within hours usually of being glutened.  I am so vastly improved that my husband watches hawklike for any trace of gluten getting back in. And, yet, we fail. I think I have been glutened 6 times since July. I know I have been. I don't think, I know I have been.
I did an amazingly restrictive diet for a year two years ago (eliminating dairy, soy, eggs, vinegar, most nuts, gluten, sugar, and everything I had become allergic or sensitive too because oh, yes, Leaky Gut Syndrome and Candidiasis were also ascribed to me).  I was put on almost that same diet again last July. I am also, yes, perimenopausal.  I could fill a legal page with all the weird diagnosis I have gotten over the last twenty years. Everything from Chronic Reactive Epstein Barr Virus (one doctor maintains I merely had one years long episode - she looked at the DNA), to pernicious anemia, iron deficiency anemia, low cholesterol, potassium deficiency, gastroenteritis, I have had hormone imbalances too. I am almost certainly infertile.
I am however, on the road back. I finally have some of the answers. More will be forthcoming. I will be persistent. I have regained my sense of humor. I feel empowered by the doctor today and also your words of support. Thank you. From the bottom of my heart, thank you.
Please do not feel sorry for me. I do not. I feel like I have some wonderful people in my corner. Maybe not my family but others. Sometimes you have to pick a family because the one you are born into isn't up to the task. That is okay, the people that are in my corner are amazing. Thank you all for the advice.
Funny how an eye rash could get me pointed and empowered in the right direction.

[cyclinglady]

24 minutes ago, Lisa Purcell said:

I had a rash on my eyelid today. I went to a walk in clinic. Some good news. Doctor thinks it is only a stye.
While I was there I had her take a look at my knees and ankles and told her about my new PCP saying my swollen knees and ankles are from perimenopause. Nope. No, they are not. She feels they are neuropathic. She said I need to have a heart to heart with my PCP and make her get to the bottom of what is causing the neuropathy. She went on to say that if my PCP does not hear me I need to find a new PCP. She thinks I should give her a second chance since I like her so well. So, I will. She is out having a hysterectomy so I will have to wait until she gets back.
Honestly, it was a relief to have her tell me something is wrong. I knew something was wrong. I knew it wasn't perimenopause. It was just about this time last year that a doctor tried to tell me it was perimenopause and age that was causing my shortness of breath, joint pains, rash, etc. and so on. My birthday is tomorrow. Happy Birthday to me. Anyway, I am finding the humor in it already. We were laughing at the doctor's office. I almost peed my pants. I know, maybe something in my brain slipped a little, but that is okay. With my sense of humor there is nothing that can beat me down. And, today, I found my sense of humor. I don't know why. Something about having someone hear me I guess. 
Someone above asked what else is going on: In addition to rash (which I think is the DH Rash). Celiac Disease, Degenerative Disk Disease, Osteoarthritis in my left foot, my left thumb joint has arthritis and needs an implant at some point, my right hand has arthritis, Raynaud's, Ulnar Neuropathy (I am told I need surgery), carpal tunnel syndrome, TMJ disease or syndrome (I do not recall which term they used), asthma, periodontal disease, dry eyes, night blindness, fatigue. OMG fatigue. Joint aches, muscle aches, constipation, menstrual problems, etc. I just know I am leaving stuff out. Brain fog. I have been depressed, anxious. Many, many of my symptoms have improved since going gluten free. Some are entirely gone but most are limited to a dull roar. The rash comes back within hours usually of being glutened.  I am so vastly improved that my husband watches hawklike for any trace of gluten getting back in. And, yet, we fail. I think I have been glutened 6 times since July. I know I have been. I don't think, I know I have been.
I did an amazingly restrictive diet for a year two years ago (eliminating dairy, soy, eggs, vinegar, most nuts, gluten, sugar, and everything I had become allergic or sensitive too because oh, yes, Leaky Gut Syndrome and Candidiasis were also ascribed to me).  I was put on almost that same diet again last July. I am also, yes, perimenopausal.  I could fill a legal page with all the weird diagnosis I have gotten over the last twenty years. Everything from Chronic Reactive Epstein Barr Virus (one doctor maintains I merely had one years long episode - she looked at the DNA), to pernicious anemia, iron deficiency anemia, low cholesterol, potassium deficiency, gastroenteritis, I have had hormone imbalances too. I am almost certainly infertile.
I am however, on the road back. I finally have some of the answers. More will be forthcoming. I will be persistent. I have regained my sense of humor. I feel empowered by the doctor today and also your words of support. Thank you. From the bottom of my heart, thank you.
Please do not feel sorry for me. I do not. I feel like I have some wonderful people in my corner. Maybe not my family but others. Sometimes you have to pick a family because the one you are born into isn't up to the task. That is okay, the people that are in my corner are amazing. Thank you all for the advice.
Funny how an eye rash could get me pointed and empowered in the right direction.

 

Glutened six times since July!  I am sorry, but that is unacceptable.  Each glutening sets off an autoimmune flare-up that can last for weeks or months.  

I was glutened at the beginning of July.  By mid-August my celiac antibodies were higher than when I was diagnosed.  Six weeks later!    I am diligent about being gluten free.  I have been preparing food for both me and my hubby who has been gluten-free for 15'years, so I know the drill.  I do not even know what glutened me!  I suspect one medication or a gluten-free product, but I do not know because I will not test my theory!  

During that time, it hurt to eat anything.  I lost weight.  Became lactose intolerant again.  Three months to heal.  Six months to regain my weight.  I do not eat out at all.  I can not afford a set-back like that again.  

Please adhere to your diet!  This is probably why you are sick still.  Your doctors probably think you are adhering to your diet.  Go back to your PCP and tell her that you have not been  gluten-free diet compliant.   Get a follow-up celiac antibodies test panel.   At least this will determine if you are improving or not.  Ask for a referral to a dietician who specializes in celiac disease. Is your home 100% gluten free?  Your family sounds supportive, so I would insist that no gluten enters the house.  Read our Newbie 101 section under "Coping".  

Celiac disease is the ONLY disease that requires tha patient to manage his/or her own care. 

[Lisa Purcell]

The doctor suspected I was still getting glutened.  Each time I was glutened I figured out how later.
Seasoning - who knew.  Wooden spoons. Cross-contamination.
I was glutened at one restaurant by their seasoning. I only found out later when I inquired. They said they have gluten free shrimp but that the regular shrimp not only has gluten in the seasoning, but that it also is buttered with the same butter they use for the rolls (gross).
I got glutened again at a different restaurant (also shrimp, an appetizer. My stepmom was eating them, said they were hot. We all sampled one. The waitress ran over to tell me there was gluten in the sauce.
I was glutened by the salad bar at Subway (I did not realize about cross-contamination).
My husband glutened me with a soup he made twice. He didn't know that soup stock had to be checked. He used a wooden spoon the second time. I didn't want to hurt his feeling so I ate the soup anyway, thinking, "what are the odds that it could really get me?"
I was glutened by a burrito that I bought at Walmart. Some jackass put the gluten free ones in with the gluten containing ones and I did not realize it until after I got glutened and looked through my trash and found the regular wrapper. 
I told the doctor yesterday and she said glutenings happen. She told me to suspect shampoo, lotions, etc. I told her I have already gone through my cabinets.  I am learning. I am trying. My doctor just diagnosed me and then sent me here.
I read a good book, "Gluten Freedom" by Dr. Alessio Fasano. That helped me a lot. 
I am going to get better at this. I promise. I am trying.  I bet you are right that it is the gluten at play here. That makes me feel better because if I can master the gluten the damage should be reversible. Versus, if it is some associated condition. Which would have to be resolved in some other way.
Thank you for the information.
Most of my family have not been supportive. My husband is supportive for the most part. He was going to go gluten free but only made it down two isles of the grocery store before he decided he needed hamburger rolls.
I joined a support group on Facebook. Some of the people in it live with gluten eaters and they do fine, by being careful. We have separated things like toasters, wooden spoons. He mostly just eats a roll. He is not a big bread eater anyway. He does his own cooking.  I am careful.
I feel I have identified how I got glutened and will work to avoid those things but you are right, I should get my antibodies rechecked.
Thank you.

[cyclinglady]

It is hard, Lisa!  So much to learn and you can never let your guard down!   Keep trying and soon you will see the benefits.  I would not eat out for a while to see if that helps (unless it is popping in the grocery store for a gluten-free meal or snack).  

I am a diabetic and admit to cheating (NEVER on the gluten-free diet).  But my meter will give me all the proof that I need since I do not "feel" any symptoms.  It is an great monitoring tool.  Follow-up testing six months after your diagnosis and at a year is necessary.  You need to see on a lab report as to how you are doing.  Ask for a vitamin and a mineral check too.  This is all recommended by the GI Association.  

We are here to help each other. ?

[squirmingitch]

Lisa, there is a huge learning curve to mastering the gluten-free diet! One thing I would say would be NO MORE eating out for 3 or 4 months at least. Bring your own food. Even beyond that time ALWAYS have "take along" snacks in your purse or the car for those times you really, really need something to eat. Never go anywhere without taking something safe to eat... nuts, raisins or other dried fruit. a kind bar, Larabar, apple, hard boiled egg etc...

That's why it's important to read the Newbie 101 and follow all the links contained in the posts.

 

[SLLRunner]

Lisa, hang in there. You can do this!

[manasota]

Hi Lisa,

I can definitely relate to you.  Only 2 people in my extended family were supportive of my Celiac diagnosis and lifestyle requirements.  You are right about choosing a new "family" now.  I had Celiac for 60 years prior to diagnosis.  Lots of varying symptoms.  I also had eyelid rashes that looked much like yours.  I also had swelling around my ankles and knees and groin.  I've been gluten free for 6 years (only glutened once by RX med).  I only eat whole foods I make myself.  No eating out.  Not worth the risk.

I do want to mention that my ankle rashes/swelling seem to also be related to Graves Disease.  Sometimes they still hurt & feel like my skin is freezing or burning--can't tell which.  I have to  wear tight knee sox to keep the pain down.  The sox provide firm support & keep things (including air) from brushing against the skin and causing more pain.  Have you had thyroid testing?  Maybe that might help you.

Don't let anyone tell you it's "all in your mind" just because they don't understand it!  Ignore any and all unsupportive people--especially family members.  I know we want their support so much; but often they just aren't capable of providing it.

You've just got to love and support yourself as much as possible.  And...you MUST keep yourself gluten free!  Focus on all the kind people here who are trying to help you.  LET THEM!

I wish you all the best!  Hugs!

P.S.  I still get groin swelling that can come and go in MINUTES!  Not one of the many specialists I've seen understands what it going on in my body.  However, one did say that my body was simply trying to help me.  Even if nobody completely understands your body, it is still your most precious gift.

 

[Lisa Purcell]

Thank you all so much.  The only place I trust to eat out at now is a little diner that makes me an omelet . The wash the pan out just for me. Offered to make me fries in separate oil. Really have gone out of their way. I have been glutened so many times now that I am almost afraid to eat out.
I will look the links over. Thank you.
I thought my eye rash was related to gluten. It burns like the other rashes I get.
My knees are burning now, the tops of them.  Not just behind them and along the tendons but the knee caps. Who knew a knee cap could ache.
Anyway, I will get better at this.
I saw family today that I hadn't seen recently. They were impressed by the changes in my arm (hyperpigmentation gone) and say I look better in general. They started to ask me questions about gluten, Celiac Disease and consider they need to be tested.
It was the best birthday present they could give me with the exception of this, a bracelet my godchild gave me. I love her so much. I am infertile. Having her two year old hands try and put the bracelet on made me cry. It was okay by my family. They said it was good to get it out.  She also made me a drawing.
Holding her today I was motivated to want to do this. I want to be able to do things with her and for her. I want more energy, less pain. Anyway, it was a good day.
Thank you.

[squirmingitch]

HAPPY BIRTHDAY LISA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

What a lovely bracelet. 

I am so happy to hear they were asking about celiac and talking about testing. One step at a time! It's a start.

[Lisa Purcell]

Just an update. Some of my bloodwork came back. I am very low in iron. My levels are 13.5 (normal is 20 - 305). My B12 is off the charts it is so high. My B12 was greater than 1500 (nurse said they don't measure past that amount). I can't remember the normal range for B12.
I am waiting for a 24 hour urine test's results. I am also waiting on the rest of the blood test results (some blood tests were sent to an outside lab).
The doctor I saw while my PCP is on medical leave thinks that some of my issues are due to insufficient absorption of vitamins/nutrients. She thinks my lymph nodes may be blown up due to either gluten still getting into my diet (which we know has happened, unfortunately) or my history with EBV. She said, that in her opinion, my knees and ankles are swollen because my lymph system is not working well right now.
She said my medical records have finally caught up with me. She completely agrees I have Celiac Disease.
She said that the problems I am having with doctors boils down to this, "Doctors are trained not to see a zebra when a horse is standing in front of them. Sometimes, however, a zebra is in front of them. You, my dear, are a zebra."
I like her.