swollen, bruised, pain in BOTH ankles

[mYstummyHurt]

hello, ive recently began to suspect gluten intolerance and possible Celiac disease. symptoms include... painful bloating, excessive gas, stomach cramps, diarrhea, pale stool, bad taste in mouth during an attack. ive always had stomach problem since i can remember and have always has excessive gas. as ive gotten older these "attacks" have gotten worse and unbearable, causing me to try to figure out whats wrong w me and stop it from happening. during a typical episode heres what happens... usually at night, but not always, i wake up to severe bloating and stomach pain. i go sit on toilet for sometimes hours until i can pass some of the gas, then i get diarrhea. seems my body is attempting to flush everything out. typical episode lasts 8-10 hours, then the discomfort is bearable enough for me to carry on with life. after first suspecting dairy products as the culprit and eliminating dairy from my diet, the symptoms persisted. then 3 weeks ago i cut gluten out of my diet and all symptoms stopped. i once ate gluten accidentally during this time and suffered an attack that night. i havent ate gluten since and have suffered no attacks.

HOWEVER, about a week ago (AFTER gluten elimination from diet for 2 weeks) both my ankles began to hurt and swell on the inside of the ankle near the achilles tendon. these symptoms have gotten worse to the point my ankles are bruised, swollen and very painful to where i can hardly walk, especially in the morning after being at rest or after sleeping all night. it is not edema, i know that much. after scouring the internet i cannot find any info about  what is happening to my ankles and why. any help would be greatly appreciated. 

thanks, 

[cyclinglady]

Celiac disease is an autoimmune disorder.  So, simply eliminating gluten for the short term is not to help with healing that fast.  Gluten triggers the autoimmune flare-up (response) that can last for weeks or months (like a lupus or rheumatoid arthritis flare up).  The response does not end with the physical exiting of the gluten offender (wheat, rye and barley) from body.

If you have celiac disease, it takes most patients about a year or longer to heal.  It is not like a lactose intolerance which improves within a day or so once you remove dairy from your diet.  The gluten-free diet has a steep learning curve.  People make mistakes for weeks or months.  Things like eating out or eating processed foods can be problematic.  

The leg swelling should be checked out by a doctor.  That is very concerning.  

Edited October 4, 2019 by cyclinglady

[mYstummyHurt]

27 minutes ago, cyclinglady said:

Celiac disease is an autoimmune disorder.  So, simply eliminating gluten for the short term is not to help with healing that fast.  Gluten triggers the autoimmune flare-up (response) that can last for weeks or months (like a lupus or rheumatoid arthritis flare up).  The response does not end with the physical exiting of the gluten offender (wheat, rye and barley) from body.

If you have celiac disease, it takes most patients about a year or longer to heal.  It is not like a lactose intolerance which improves within a day or so once you remove dairy from your diet.  The gluten-free diet has a steep learning curve.  People make mistakes for weeks or months.  Things like eating out or eating processed foods can be problematic.  

The leg swelling should be checked out by a doctor.  That is very concerning.  

Thank you so much for your response and information. thats does make sense to me. my wife is scheduling me a dr appointment right now. the ankle thing is very concerning to me as it seems to be getting worse and i know its not from injury. but anyways, thanks again!

[mYstummyHurt]

3 hours ago, cyclinglady said:

"Yes....it is possible.  Just get back on gluten (eat something yummy!) and get the test.  You can even go to a walk in lab and make the request and pay cash/credit.   You probably would not need to do a 6 to 12 week gluten challenge since you were off for only three weeks.    Most celiacs take a long time to heal, but in theory some can heal in little as two weeks.  Rare, but possible."

 

 

 

... i hope you dont mind but i moved your last comment to this thread so that i dont hijack that other thread....

thank you so much for your response. you are an angel to be helping people like this. i made a dr appt to a GI dr, but the appointment isnt til Oct 15th ? so im going to urgent care on my way home for the ankles. i dont think that can wait til the 15th.

you mentioned i could go to a lab and order a CELIAC blood test myself.... is there a specific name of test that i need to tell them to run? in your opinion do you think eating gluten the day before the test would be sufficient? i realize its not a for sure thing and only your opinion and i promise i wont come back on you if it doesnt work lol. im very gratful for any advise.

[cyclinglady]

If it were me, I would eat as much gluten as possible up until the test.  One to two slices of bread or equivalent.  I ended up consuming a loaf of sourdough daily (lots of butter) and plenty of cookies and cakes leading up to my endoscopy seven weeks after a positive DGP IgA blood test.    But it is up to you.

Here is a walk in lab website example.  Not sure what is available where you live.  You can google it.  

https://www.labcorp.com/help/patient-test-info/celiac-disease-antibody-tests

Edited October 4, 2019 by cyclinglady

[GFinDC]

You may have an allergy to wheat or something else also.  I suggest that because swelling in extremities is sometimes an allergic response.  But swelling can happen with celiac also.  I used to have quite a bit of ankle swelling and face and hands too.  It went away after I was gluten-free a while.

[mYstummyHurt]

Update.... so i went to urgent care last night. The Dr. was pretty confused and concerned because of the ankles and the fact that i had a low fever. BP normal. O2 normal. they did an EKG which results were somewhat normal he said. he kept asking if i had shortness of breath, if so he said he'd send me to the hospital immediately. thank god i didnt have that i hate hospital stays. he asked if i had any sickness or coughs, which i didnt. didnt realize i had a fever either. i told him about how i'd recently stopped eating gluten about 3 weeks ago due to stomach issues and how id been eating much healthier lately, and how much better i'd been feeling. told him i had an appt with a GI doctor and thats when he told me to make sure and go to that appointment because i need bloodwork because i may have a serious auto-immune disease. so i left urgent care feeling worse than when i came in. 

[GFinDC]

The doc may be right.  After-all, celiac disease is a serious AI disorder!  About the ankle swelling, did the doc suggest trying some anti-histamines?  If it is an allergic response anti-histamines may reduce the swelling.

[mYstummyHurt]

21 hours ago, GFinDC said:

The doc may be right.  After-all, celiac disease is a serious AI disorder!  About the ankle swelling, did the doc suggest trying some anti-histamines?  If it is an allergic response anti-histamines may reduce the swelling.

He gave a an anti inflammatory but i havent been able to get it from the pharmacy. could be an allergic reaction i guess, but it is day 11 of the ankle problem and i havent been eating anything out of ordinary. last night was a strange night tho. During the day i started to get an itchy sore on my lip. Got tired early and went to bed. Woke up in middle of night w fever. Walking to go to bathroom and my ankles were hurting maybe the worst ive felt so far and the sore on my lip was worse. Went back to sleep. In the morning my fever broke and when i got up i noticed no ankle pain! Still a little swelling but no pain! And the sore on my lip was gone! Not sure what to make of it but i do feel better.

[mYstummyHurt]

Oh and i forgot to mention..... the mouth sore started when i decided to eat gluten for the first time since i quit eating it,  for the blood test. I noticed it on the 2nd bite i took from a pancake. 

[mYstummyHurt]

So im getting a blood test tomorrow. ive been eating gluten the last few days but havent suffered any GI "attacks". my question is... before the test when i eat gluten, am i trying to eat a lot of gluten to trigger an attack??, or am i just supposed to eat a couple slices of bread regardless of how its effecting my body?? 

thanks in advance for any info.

[knitty kitty]

6 hours ago, mYstummyHurt said:

So im getting a blood test tomorrow. ive been eating gluten the last few days but havent suffered any GI "attacks". my question is... before the test when i eat gluten, am i trying to eat a lot of gluten to trigger an attack??, or am i just supposed to eat a couple slices of bread regardless of how its effecting my body?? 

thanks in advance for any info.

You may want to ask your doctor to check for a thiamine deficiency and B12 deficiency.  Thiamine deficiency can cause fever, mouth sores and swollen ankles and legs, and heart/breathing problems. B12 deficiency can cause similar symptoms.  Many Celiacs have vitamin deficiencies before diagnosis due to diarrhea and malabsorption.

No, you're not trying to trigger an attack, you want to keep producing antibodies so they can be measured in a blood test.

Hope this helps!

 

[mYstummyHurt]

54 minutes ago, knitty kitty said:

You may want to ask your doctor to check for a thiamine deficiency and B12 deficiency.  Thiamine deficiency can cause fever, mouth sores and swollen ankles and legs, and heart/breathing problems. B12 deficiency can cause similar symptoms.  Many Celiacs have vitamin deficiencies before diagnosis due to diarrhea and malabsorption.

No, you're not trying to trigger an attack, you want to keep producing antibodies so they can be measured in a blood test.

Hope this helps!

 

Thank you knitty kitty

[cyclinglady]

Just know that the current recommendation for celiac blood testing is 6 to 12 weeks of eating gluten daily.  You said that you were gluten free for three weeks.  That may impact your blood test results because some celiacs can heal in as little as two weeks (rare).   I hope this helps! 

https://beyondceliac.org/celiac-disease/the-gluten-challenge/

[mYstummyHurt]

14 hours ago, cyclinglady said:

Just know that the current recommendation for celiac blood testing is 6 to 12 weeks of eating gluten daily.  You said that you were gluten free for three weeks.  That may impact your blood test results because some celiacs can heal in as little as two weeks (rare).   I hope this helps! 

https://beyondceliac.org/celiac-disease/the-gluten-challenge/

Thanks for that. ive been eating small amounts of gluten since this past saturday. the weird thing is my stomach has been fine, but my ankles have gotten worse and my lowgrade fever was back. the pain last night was so bad after i woke up and walked to the bathroom and back to bed. i was going to eat 2 tortillas last night but i chickened out because my ankles were so bad. im so confused. i just hope the family doctor has some answers when i see her today. this is the most confusing ailment ive ever had. 

[mYstummyHurt]

do you guys think that if my ankle problem is being caused by celiac, then that would mean the celiac antibodies would be at a level sufficient to detect on blood test, even though ive had no GI issues in the last few weeks??

[cyclinglady]

Unfortunately, we are not doctors and we can not diagnose you.  Celiac disease has over 200 known symptoms.  We know that celiac disease is systemic (involving organs beyond the GI system).  We also know that not all celiacs have GI problems.  Some have no symptoms at all (those are usually caught when a relative is diagnosed and they have family tested).  

What you can do is see if celiac disease is the root cause of your symptoms.  Test and find out.  If negative, look for something else.  You can ask your doctor if you can repeat the celiac blood tests if negative.  You should let her know that you were gluten free for three weeks and that it may impact the test results.  Most people though do not heal within three weeks.  

I just wanted you to know that by going gluten free, you may impact the results as all celiac disease testing requires you to be on a full gluten diet months before testing.  I am sorry that there is no clear cut answer.  

Have your doctor check you for basic lab bio markers like low iron, anemia, etc.  Celiac disease shares many common symptoms with so many autoimmune disorders.  It is why you can not diagnose based on symptoms.  See if you doctor thinks you could have a different one.  It is worth talking about.  

So many of us took years to find out the cause of our symptoms. I understand your frustration.  Keep advocating for your health as something is clearly wrong!  

Edited October 9, 2019 by cyclinglady

[mYstummyHurt]

2 minutes ago, cyclinglady said:

Unfortunately, we are not doctors and we can not diagnose you.  Celiac disease has over 200 known symptoms.  We know that celiac disease is systemic (involving organs beyond the GI system).  We also know that not all celiacs have GI problems.  Some have no symptoms at all (those are usually caught when a relative is diagnosed and they have family tested).  

What you can do is see if celiac disease is the root cause of your symptoms.  Test and find out.  If negative, look for something else.  

 

im not asking for diagnosis from you guys and i understand your knowledge may be limited. i do appreciate your experience w the disease and your efforts to help others. im very grateful for the info you do provide. i cant stress that enough.

my questions and concerns are more about getting an accurate diagnosis, as i understand celiac can be hard to diagnose. i realize i made a mistake cutting gluten 3 weeks ago. now my concern is... have i been eating enough gluten to get my anti bodies back up? and even tho i havent had GI issues, can the "ankle thing" be a sign that antibody levels are high enough to detect??

i think most importantly what i need to do is calm down and try to get this off my mind for a while. its been driving me mad and all ive been doing is relentlessly researching AI diseases and symptoms. i think i just need to stop worrying so much and have faith in the medical system even tho its failed me in the past.

thanks again for all your help and im sorry for being such a pain

[cyclinglady]

You are not a pain!  We are here to help!  

Believe me, I get your frustration.  I had GI and allergy issues since I was a kid.  Brushed off by many doctors (including 4 GIs).  Then I heeded the advice of my allergist and did an elimination diet.  Only, gluten did not seem to bother me, but eggs, milk, garlic, mushrooms, etc. oddly  did.   GI issues gradually diminished for over a decade, popping up occasionally with attacks.  But one major symptom never went away. That was my anemia.   To complicate things, I also have a genetic anemia.  Thalassemia which keeps me just below the range for hemoglobin. Luckily, my body adapted to Thalassemia.  But add in iron-deficiency anemia and I get really sick.  My doctors over the years blamed my low iron on heavy periods or Thals.   I did not think my periods were that heavy.  I would take supplements, my hemoglobin would raise and I just went my merry way.  Then it would drop.  When my life-long anemia became so severe, my GYN wanted to do a hysterectomy, but I refused.  Finally, I hit 50 (menopause) and asked for a colonoscopy because all my friends were getting them (that and paying $23,000 a year for insurance and I wanted my money’s worth).  Best decision.  During my GI consult, he took one look at my chart and said, “I think you have celiac disease.”  

One GI doctor finally (went through four GI’s over the years) found the solution.  Lost my gallbladder a decade earlier (which was non-functioning and rotting in an otherwise healthy women).   No one thought to check for celiac disease then.  

Again, keep advocating.  Be nice.  Be persistent.  I knew that I should keep my uterus.  I knew that something was not right.  I had that hypochondriac label applied to me.  (Thank you hubby for always believing in me).  

If you test negative, you can always go gluten free.  My own hubby went gluten-free 12 years before my diagnosis.  He followed the advice of my allergist and his GP.  It worked.  He ate gluten and he got sick.  He refuses to do a challenge because he knows he is going to get super sick and that we are self-employed and we frankly, need to pay our bills.  

Hang in there!  Hugs!  ?

Edited October 9, 2019 by cyclinglady

[mYstummyHurt]

4 minutes ago, cyclinglady said:

You are not a pain!  We are here to help!  

Believe me, I get your frustration.  I had GI issues since I was a kid.  Brushed off by many doctors (including 4 GIs).  Then I heeded the advice of my allergist and did an elimination diet.  Only, gluten was not an issue.  Wheat did not bother me, but eggs, milk, garlic, mushrooms, etc. did.   GI issues gradually went away for over a decade.  But one major symptom never went away. That was my anemia.  I was told to take iron tablets and that it must be due to heavy periods.  To complicate things, I also have a genetic anemia.  Thalassemia which keeps me just below the range for hemoglobin. Luckily, my body adapted to Thalassemia.  But add in iron-deficiency anemia and I get really sick.  My doctors over the years blamed my low iron on heavy periods.  I did not think they were that heavy....I would take supplements, my hemoglobin would raise and I just went my merry way.  Then it would drop.  When my life-long anemia became so severe, my GYN wanted to do a hysterectomy, but I refused.  Finally, hit 50 (menopause) and asked for a colonoscopy because all my friends were getting them (that and paying $23,000 a year for insurance and I wanted my money’s worth).  Best decision.  During my GI consult, he took one look at my chart and said, “I think you have celiac disease.”  

One GI doctor finally (went through four GI’s over the years) found the solution.  Lost my gallbladder a decade earlier (which was non-functioning and rotting in an otherwise healthy women).   No one though to check for celiac disease then.  

Again, keep advocating.  Be nice.  Be persistent.  I knew that I should keep my uterus.  I knew that something was not right.  I had that hypochondriac label applied to me.  (Thank you hubby for always believing in me).  

Hang in there!  Hugs!  ?

wow this is a very complicated disease, isnt it!?!? 

Im so fortunate that others have painstakingly paved the way to new knowledge and understanding of "gluten" for new patients like me.

thanks for all you guys' help and information

thank you cycling lady. i wish you all the best!!

[RMJ]

If you’ve been gluten free and are now doing a challenge, I don’t think symptoms, GI or other, would necessarily indicate detectable antibody levels. A recent scientific paper demonstrated that the nausea and vomiting people with celiac get a few hours after eating gluten was via a cytokine response from a type of T cells, not an antibody response. Also, the manufacturers of the antibody tests don’t try to correlate antibody levels with either symptoms or degree of villi damage.

I hope your doctors can figure out your ankle swelling troubles and give you a definitive yes or no on celiac!

[GFinDC]

There's no way to know what your antibody levels are without doing the testing.  That's what the tests are for.  Hopefully they will give you a clear positive result.  If they are negative it could just mean the 3 weeks off gluten caused a misleading test result.

You can buy antihistamines at the grocery store.  Benedryhl is a common one and is not expensive.

[Wheatwacked]

I read somewhere that Celiac is a blessing in disguise because it makes you aware of subclinical dietary issues.

On 10/8/2019 at 5:28 PM, mYstummyHurt said:

Many Celiacs have vitamin deficiencies before diagnosis due to diarrhea and malabsorption.

choline (eggs), iodine (milk,nori), D, potassium (bananas), magnesium, lithium, selenium, lutein, preformed vitamin A, and zinc are some of the nutrients that had a significant positive impact on my health. Compare your dietary intake to what is recommended for all 41 essential vitamins and minerals and adjust your diet. Get your doctor to help. -one sheet of sushi nori is 400 mcg. The minimum RDA is 150 mcg and the maximum is 1,100. I set my goal at 75% of the upper limit so I chew on a sheet or two of nori and have glass or two of milk a day. Close enough. I had trouble with milk lactose intolerance until I made my own fermented kosher dill pickles. The pickles repopulated the lactobacillus in my gut. Before they replaced iodine with bromine in baked goods (early 70's) as a dough conditioner, each slice of bread had 100 mcg. Assuming one sandwich a day, that's an immediate reduction of 200 mcg a day in the American diet .

Quote

Pregnant women who do not consume dairy products may be particularly at risk of iodine insufficiency. According to NHANES 2001–2006 data, pregnant women who consumed no dairy products in the previous 24 hours had a median urinary iodine concentration of only 100 mcg/L, compared with 163 mcg/L among consumers of dairy [27]. Women who restrict their dietary salt intake also have lower urinary iodine concentrations and might be more likely to be iodine deficient than women who don’t restrict salt intake [30]. https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

It is obvious that gluten aggravates your ankle swelling so the sooner you get confirmation the sooner you can start to heal. By the way I had that foot swelling. Oddly, unknown to me at the time, my older brother had testicular swelling during the same time period. I went GFD, he didn't and is now passed.

[Wheatwacked]

On 10/9/2019 at 8:26 AM, mYstummyHurt said:

i was going to eat 2 tortillas last night but i chickened out because my ankles were so bad.

Thinking about this overnight I was reminded of the bad vaudeville joke; Doctor, whenever I raise my arm up it hurts. The doctor answered: Don't raise your arm.

Perhaps you should talk to the doctor about delaying the gluten challenge until your ankle swelling has had a chance to improve. You have identified a direct cause and effect. Not eating gluten does not hurt you, but eating it does seem to. I fear the damage being done might be greater than the benefit of a differential diagnosis at this time. You can get the gluten specific testing done at a later date when your symptoms are not as acute and you can do the gluten challenge without putting yourself in pain and at risk. 

[mYstummyHurt]

21 hours ago, Wheatwacked said:

Thinking about this overnight I was reminded of the bad vaudeville joke; Doctor, whenever I raise my arm up it hurts. The doctor answered: Don't raise your arm.

Perhaps you should talk to the doctor about delaying the gluten challenge until your ankle swelling has had a chance to improve. You have identified a direct cause and effect. Not eating gluten does not hurt you, but eating it does seem to. I fear the damage being done might be greater than the benefit of a differential diagnosis at this time. You can get the gluten specific testing done at a later date when your symptoms are not as acute and you can do the gluten challenge without putting yourself in pain and at risk. 

I feel the same way. my body is screaming NO MORE GLUTEN, yet i continue. i almost feel sorry for my body as if it werent me, in a wierd way. i told the dr all this but she said to keep eating it. i expressed how hard that was going to be. she did sympathize, but encouraged me to continue. at this point my main concern is accurate diagnosis because ive realized this has the ability to get extremely painful to the point im temporarily unable to walk. im afraid i wont be able to go to work and feed my family. honestly i havent been able to force myself to eat 2 slices of bread until a few days ago i started. symptoms are the same except now i have gas rumbling in my stomach that seems to be controlled by simethicone enough to where i havent had any night attacks, just kinda gassy and foul taste in my mouth most of the time.