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mYstummyHurt

swollen, bruised, pain in BOTH ankles

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ok met with GI doc. i have an upcoming endoscopy and colonoscopy in a couple weeks, and i still need to take the blood test. she said she wants to check me for celiac and crohns.

the ankles flare and subside every couple days, sometimes they can flare and subside in 24 hours. sometimes i can hardly walk, other times like today im not even limping. but the swelling is always there to a noticeable degree. when they flare they get red. the pain has spread to some of the metatarsal joints, and also the patella tendon on the inside of the knee. 

ive been eating a lot more gluten. have had no GI issues other than gassy, burping, and foul taste in mouth. i even ate pizza and ice cream one night and didnt even get sick during the night. i cant believe it. this is so confusing. ive even had normal bowel movements which for me is not normal.

its almost as if the illness left my gut and went to my ankles, and it all started after id been gluten free and feeling good and not having anymore GI symptoms. thats when the ankles flared.

i have to go take my blood test at a time of my choosing. i havent gone yet because ive been trying to eat more gluten and because i gotta wait for my endoscopy anyways. ive just been trying to buy more time on gluten to let the antibodies build up, as i feel they may have diminished or something. i dont even know anymore.

ill try and post if/when i get a diagnosis, whatever that may be, in case others find themselves puzzled by similar symptoms

 

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Nice that she is also checking you for Crohn’s.  My niece had celiac disease firmly ruled out (I thought she had it for sure).  Her 4th GI caught her Crohn’s diagnosis via a pill camera.  Her damage was beyond the reach of both scopes.  She is doing well on her treatment.  

 

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Have you researched gout? It is an autoimmune disease that can be trigger by certain foods. Also high dosage niacin or a rapid correction in low b12 levels can trigger a gout attack if you have the disease. Some people get it there ankles and the inflammation can radiate out to other areas.  Might be a possibility I don't know for sure. Like Celiac disease it is treatable. 

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It was after taking prednisone for the gout in my big toe in 2012 that I noticed the prednisone took away all my other debilitating fibromyalgia pain, but not the foot neuralgia. At the time there were three treatments available for gout, each took 10 days of medication. Two cost $200 dollars each and the prednisone was only twenty dollars for the 10 days. Been on prednisone for the pain ever since. When I went GFD in 2014 I was able to reduce the dose from 30 mg per day to 10 mg per day. At this point, my raised vitamin levels has been healing me from head to toe. The foot neuralgia has been improving, something I thought was irreversible.

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16 hours ago, Wheatwacked said:

It was after taking prednisone for the gout in my big toe in 2012 that I noticed the prednisone took away all my other debilitating fibromyalgia pain, but not the foot neuralgia. At the time there were three treatments available for gout, each took 10 days of medication. Two cost $200 dollars each and the prednisone was only twenty dollars for the 10 days. Been on prednisone for the pain ever since. When I went GFD in 2014 I was able to reduce the dose from 30 mg per day to 10 mg per day. At this point, my raised vitamin levels has been healing me from head to toe. The foot neuralgia has been improving, something I thought was irreversible.

 The standard treatment for gout from what I have read online is a medication to lower uric acid levels. Also pain medication if needed. I have gotten a gout flare up once. It was very painful and since then I have been checking my blood uric acid levels fairly regularly.  It hasn't come back. For some it can be completely debilitating though if not controlled. 

(This isn't medical advise though, as I am not a doctor.)

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There is a scene in the movie Joan of Arc (I think) that depicts the Pope suffering a gout attack. Accurate. It is called a rich man's disease because was believed caused by rich, fatty foods. I adjusted my diet using Dr Fuhrman's as a guide. I was not GFD. I had 20 dog years good experience with Prednisone so given how well it worked with my dogs and the scary side effects and expense of the other treatments I insisted the doctor try Prednisone first. Within an hour of the first dose the pain was noticeably less and by morning just achy. A Miracle. No pain meds necessary. Not medical advice, just relaying a successful story in my recovery from Celiac Disease.

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Update... so I've seen GI doctor for colonoscopy as well as a rheumatologist. The GI doctor was kinda brief, to my disappointment.

The rheumatologist said that he didn't think it was rheumatoid arthritis. He said specifically that he thought it was from celiac or crohns, but if the tests come back negative for those then he would start testing me for rheumatoid arthritis.

Since then i had my colonoscopy, yesterday. They said had mild diverticulitis, 1 polyp, and internal hemorrhoids. Other than that everything was fine. I haven't really spoken to the dr yet so i'm not sure but i think Crohn's isn't likely, but I'll have to wait to talk to the dr. The one thing he did say before the surgery is that i need to continue the gluten challenge for 2-3 more months since ive been on gluten for a couple weeks now and have suffered no gi attacks at night like i used to, but i have had some of the other celiac symptom like gas, foul taste in mouth, my stools are starting to get lighter color and soft, and I've had a few indigestion at times so he still is thinking its probably celiac but that when i quit eating gluten my gut healed, now i need to trash it again before they can detect celiac. But with the ankle thing being as scary as it is, i must find out whats causing it. 

Thanks to all those who have added their input, greatly appreciated. I will make sure to post after final diagnosis, whenever that may be,  for those who might find this useful info. Thanks

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2 hours ago, Cindy E. said:

Have you taken Cipro or a like medicine? They have been know to cause tendon tear issues . My daughter-in-law took one pill and ended up in full length boots because of problems. They now have a lot of warnings for this type of drug. 

This is true!  I was given Cipro (antibiotic) in the hospital before my celiac disease diagnosis (gallbladder surgery).  For six months I had a buzzing in my left foot.  Imagine a B-rated 1950’s horror film.  A live Bee embedded in your foot!  Like the worm that went through brains!  “Scream......”

I found a group 15 years ago who claimed neuropathies and spontaneous snapping tendons.  I was horrified (am a runner).  My GP scoffed.  Turns out the drug now has a black box warning now about the nerve damage and snapping tendons. This is the FDA’s most severe warning.  

I have this listed in my health history as having an “allergy” to this quinolone (antibiotic).  (Funny, hubby had surgery and antibiotics are no longer given to prevent infection.). I will only take it if it means life or death!  

https://medlineplus.gov/druginfo/meds/a688016.html

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On 11/4/2019 at 8:06 AM, Cindy E. said:

Have you taken Cipro or a like medicine? They have been know to cause tendon tear issues . My daughter-in-law took one pill and ended up in full length boots because of problems. They now have a lot of warnings for this type of drug. 

No I dont take any medicines.

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On 12/10/2019 at 12:51 PM, mYstummyHurt said:

 

Hey!  I found this article and I wondered if....

https://www.thehealthy.com/nutrition/medical-mystery-scurvy-2012/

It's about a man with scurvy, yep, Vitamin C deficiency!  Do you think your symptoms are similar?

And this article describes other vitamin deficiencies that cause edema.

http://www.progressivehealth.com/5-vitamins-to-reduce-fluid-retention.htm

Hoping to help.

K

Edited by knitty kitty
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OK everyone im back with an update. ive had my colonoscopy and endoscopy and heres what they found

        colonoscopy- 1 precancerous polyp, mild diverticulitis, internal hemorrhoid

         endoscopy- hiatal hernia, irregular z line, gastritis/ duodenitis (h pylori)

i still havent taken the blood test because i was waiting for the endoscopy, but after the endoscopy they told me to wait til i see the rheumatologist again because he will also want bloodwork so i could do it all at once. they didnt find villous atrophy in the small intestine, so they said they dont thing i have celiac disease. im not convinced. i told the dr that my original symptoms of waking up in the middle of the night w extreme bloating STILL have not returned. i have hardly any GI symptoms at all right now and during the whole gluten challenge, and my ankles finally after 2.5 months have returned to normal. they chalked all my symptoms up to H pylori infection. its hard for me to believe. so i asked...

1. then why when i quit eating gluten did it go away? what connection does h pylori have with gluten? none.

2. would h pylori cause my ankles to flare like they did? no.

3. then why did my ankles flare? we dont know, see a rheumatologist.

i dont know if i mentioned that i did see a rheumatologist on my own about a month ago. he said that my ankles were in fact inflammation not edema. he said that he thought it was autoimmune and specifically celiac or ibd. he said that if they didnt find those to be the cause then to come back and he would begin testing for rheumatiod arthritis(RA). i agree w him. i feel like it is autoimmune. from my experience it makes the most sense that it is celiac disease, less likely but possibly that its RA. with everything that happened the way it did celiac makes the most sense to me. but i now realize that i will probably never know if its celiac because im done eating gluten forever. but i see the rheumatologist again in about a month to start checking for RA.

On 11/4/2019 at 8:06 AM, Cindy E. said:

Have you taken Cipro or a like medicine? They have been know to cause tendon tear issues . My daughter-in-law took one pill and ended up in full length boots because of problems. They now have a lot of warnings for this type of drug. 

no ive never taken any cipro like meds. thank you for your input

On 12/15/2019 at 2:17 AM, knitty kitty said:

Hey!  I found this article and I wondered if....

https://www.thehealthy.com/nutrition/medical-mystery-scurvy-2012/

It's about a man with scurvy, yep, Vitamin C deficiency!  Do you think your symptoms are similar?

And this article describes other vitamin deficiencies that cause edema.

http://www.progressivehealth.com/5-vitamins-to-reduce-fluid-retention.htm

Hoping to help.

K

thank you so much for thinking of me and relaying the article. thats very kind.

i take vitamin c 1000mg daily and i eat pretty healthy and love oranges so i dont think its scurvy unless theres a problem with my gut not absorbing vitamin c, which could be a possibility i guess. i dont really know where to turn at this point because i feel like my GI Dr doesnt even know me or really care. they just chalked it up to h pylori and thats it. when i asked what about my ankles they didnt even know what i was talking about and i had to completely re tell them the whole story about the ankles like it was the first time i ever saw them. they dont know me from adam and they dont listen. they just simply saw h pylori and said thats it thats everything. im very discouraged and frustrated at this point. they got pissed off at me when i asked if i could try to eliminate the h pylori with diet and probiotics BEFORE taking their triple antibiotic treatment. so im gonna do it anyways and in 5 weeks ill take a h pylori breath test to find out if its gone or not. if its not then ill take the antibiotics.

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