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Still In Limbo, More Symptoms Weekly!


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11 replies to this topic

#1 answerseeker

 
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Posted 29 January 2014 - 01:57 PM

Most of you guys know what I've been struggling with. I was sent to ER yet again by my doctor because I've developed blood clots in my right leg. The doppler ultrasound showed they are in the superficial vein, ruled out DVT and sent me home. The last few weeks I get tingling in my fingers and my mouth/jaw. I can feel it through my teeth-very strange sensation

So now they think the heart issues are related to my autotonomic nerves. I'm starting to think there is an underlying condition and this is what triggered my celiac instead of vice versa. This is all coming up after being gluten free for 6 months!
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


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#2 eers03

 
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Posted 29 January 2014 - 03:03 PM

That's intense!  I assume you are on blood thinners now, yes?  Make sure you are getting plenty of water.  Some blood thinners require you to drastically lessen your consumption of leafy green veggies...  You might check on that.  Maybe go light on the caffeine if you are a partaker.  I would obviously shy away from alcohol if you are a partaker as well.

 

I am shooting from the hip as I really don't know all that much about your circumstance but those are a few things that come to mind when you mention clots and nerves.  Did they give you any kind of indication as to when you can start doing some brisk walking?


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#3 answerseeker

 
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Posted 29 January 2014 - 03:44 PM

That's intense! I assume you are on blood thinners now, yes? Make sure you are getting plenty of water. Some blood thinners require you to drastically lessen your consumption of leafy green veggies... You might check on that. Maybe go light on the caffeine if you are a partaker. I would obviously shy away from alcohol if you are a partaker as well.

I am shooting from the hip as I really don't know all that much about your circumstance but those are a few things that come to mind when you mention clots and nerves. Did they give you any kind of indication as to when you can start doing some brisk walking?


They won't give me blood thinners because my blood pressure drops low and I feel faint. Just taking Motrin for the inflammation and elevating the leg. It's thrombophlebitis I guess only DVT needs blood thinners
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#4 GF Lover

 
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Posted 30 January 2014 - 06:27 AM

Most of you guys know what I've been struggling with. I was sent to ER yet again by my doctor because I've developed blood clots in my right leg. The doppler ultrasound showed they are in the superficial vein, ruled out DVT and sent me home. The last few weeks I get tingling in my fingers and my mouth/jaw. I can feel it through my teeth-very strange sensation

So now they think the heart issues are related to my autotonomic nerves. I'm starting to think there is an underlying condition and this is what triggered my celiac instead of vice versa. This is all coming up after being gluten free for 6 months!

 

Sorry to hear this.  Aside from the Motrin, what are the Doctors going to do to follow up with this?  Do they know how long this has been going on?  Do they know about the tingling?  Are you seeing a Specialist?  I know, lots of questions but now you are getting more physical manifestations of a problem and I worry about you.  We can all get other health problems before or after Celiac.  I was diagnosed with cancer 6 months after starting the diet.  It's why its so important not to blame everything on Celiac.  Please let us know how this goes.  I'm sure I'm not the only one concerned.

 

Best wishes,

 

Colleen


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#5 answerseeker

 
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Posted 30 January 2014 - 08:39 AM

Sorry to hear this. Aside from the Motrin, what are the Doctors going to do to follow up with this? Do they know how long this has been going on? Do they know about the tingling? Are you seeing a Specialist? I know, lots of questions but now you are getting more physical manifestations of a problem and I worry about you. We can all get other health problems before or after Celiac. I was diagnosed with cancer 6 months after starting the diet. It's why its so important not to blame everything on Celiac. Please let us know how this goes. I'm sure I'm not the only one concerned.

Best wishes,

Colleen


Yeah my husband is pretty concerned. I'm currently finishing the cardiology work up and we will go from there. I called my Dr yesterday about the tingling but he was out. I'm sure he will call back today.

It looks like it may be something with my nervous system since that regulates heart rate, breathing, blood pressure, and digestion. All of which have been affected
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#6 Gemini

 
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Posted 30 January 2014 - 08:50 AM

Yeah my husband is pretty concerned. I'm currently finishing the cardiology work up and we will go from there. I called my Dr yesterday about the tingling but he was out. I'm sure he will call back today.

It looks like it may be something with my nervous system since that regulates heart rate, breathing, blood pressure, and digestion. All of which have been affected

answerseeker.......your vein and clot problem are the result of inflammation in your body.  That's what phlebitis is...inflammation of the veins. Clots can result from this.  So are the heart issues. Inflammation and the fact that your weight is too low. Being very underweight can throw off cardio but it should resolve once the inflammation is down and you gain weight.  Every one of your symptoms can most definitely be related to Celiac and malnutrition so keep that in mind when the doctors try and tell you that they are seperate conditions.  You have not been gluten-free very long and it can take a couple of years for all this to resolve.  But you need to gain weight because that is a problem for you.  I know, I was there once myself. I had advanced malnutrition at diagnosis and I had an abnormal EKG.  I did not go to a cardiologist because even my PCP said it was because my weight was way too low.  I now go to the gym and do hard exercise with no problems. Be patient....you'll get there too!


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#7 answerseeker

 
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Posted 30 January 2014 - 10:29 AM

answerseeker.......your vein and clot problem are the result of inflammation in your body. That's what phlebitis is...inflammation of the veins. Clots can result from this. So are the heart issues. Inflammation and the fact that your weight is too low. Being very underweight can throw off cardio but it should resolve once the inflammation is down and you gain weight. Every one of your symptoms can most definitely be related to Celiac and malnutrition so keep that in mind when the doctors try and tell you that they are seperate conditions. You have not been gluten-free very long and it can take a couple of years for all this to resolve. But you need to gain weight because that is a problem for you. I know, I was there once myself. I had advanced malnutrition at diagnosis and I had an abnormal EKG. I did not go to a cardiologist because even my PCP said it was because my weight was way too low. I now go to the gym and do hard exercise with no problems. Be patient....you'll get there too!


Thank you! I'm trying to gain! My holter monitor results came back this morning. My heart gets as low as 44 and as high as 180 with a few skipped beats. Between episodes the monitor showed my heart beating at a normal 77. My pcp wants me to continue with the cardiologist and wants me to eat a diet of more salt. I'm also drinking a large Gatorade a day.

Pcp also wants me to see a GI to rule out crohns. I have an appointment next week with the GI. So between the cardiologist, pcp, and GI this should get resolved soon.....hopefully
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#8 answerseeker

 
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Posted 30 January 2014 - 10:36 AM

Do you think inflammation could have caused the kidney stone I had a few weeks ago too?
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#9 Gemini

 
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Posted 30 January 2014 - 11:34 AM

Do you think inflammation could have caused the kidney stone I had a few weeks ago too?

Have a look at this:  http://glutenfreewor...e/#.UuqkSRCGeF8

 

Why do they want to rule out Chron's? Are you still having GI issues?  I thought they diagnosed Chron's via a colonoscopy and I hope there is another test for that because I wouldn't advise doing a prep with low weight.  You'll lose even more and end up under 100 pounds.  Just be wary of what they advise, if it will affect your weight.  I weighed 94 pounds at diagnosis and I wouldn't do any testing that would affect my weight.  I still don't.  It is very hard for some of us skinny Celiac's to put weight on and I found out the hard way that really low weight can really screw you up. 

 

Just remember....your asthma was Celiac related and you have made great strides with that by being gluten-free.  The rest will follow, over time, but it can take longer than most people would like.  Eat your protein, drink your gatorade and stay positive.

 

http://www.menshealt...ect_Protein.php  I know this is geared towards men but it works for women also.  Your heart is a muscle and needs muscle food.  Eat freely and often and enjoy that because not many people get that opportunity!  ;)


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#10 answerseeker

 
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Posted 30 January 2014 - 11:49 AM

Have a look at this: http://glutenfreewor...e/#.UuqkSRCGeF8

Why do they want to rule out Chron's? Are you still having GI issues? I thought they diagnosed Chron's via a colonoscopy and I hope there is another test for that because I wouldn't advise doing a prep with low weight. You'll lose even more and end up under 100 pounds. Just be wary of what they advise, if it will affect your weight. I weighed 94 pounds at diagnosis and I wouldn't do any testing that would affect my weight. I still don't. It is very hard for some of us skinny Celiac's to put weight on and I found out the hard way that really low weight can really screw you up.

Just remember....your asthma was Celiac related and you have made great strides with that by being gluten-free. The rest will follow, over time, but it can take longer than most people would like. Eat your protein, drink your gatorade and stay positive.

http://www.menshealt...ect_Protein.php I know this is geared towards men but it works for women also. Your heart is a muscle and needs muscle food. Eat freely and often and enjoy that because not many people get that opportunity! ;)

Yes I'm still getting gurgling and mushy stools. Still getting abdominal pain off and on and when I pointed to where it hurt, he said that's the colon. I also get very swollen in the rectal area. But I also had that kidney stone with an infection so he just wants to make sure it's not related to the colon.

I totally agree with the prep. I mentioned that to him because I know it will cause more weight loss, not to mention I'm not even sure it would be safe with me already feeling so weak and dizzy! I'm sure the GI would have a different opinion about it. I don't think a responsible GI would do a colon prep on someone already down to 101lbs without reason.

They should be able to assess by blood ESR rate and I think they can do a stool test. I won't do a colon prep at this point though!
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#11 answerseeker

 
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Posted 30 January 2014 - 11:53 AM

Have a look at this: http://glutenfreewor...e/#.UuqkSRCGeF8

That was really helpful wow! I couldn't find any correlation. I've never had one in my life before this one and they are torture!
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#12 Gemini

 
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Posted 30 January 2014 - 01:54 PM

Yes I'm still getting gurgling and mushy stools. Still getting abdominal pain off and on and when I pointed to where it hurt, he said that's the colon. I also get very swollen in the rectal area. But I also had that kidney stone with an infection so he just wants to make sure it's not related to the colon.

I totally agree with the prep. I mentioned that to him because I know it will cause more weight loss, not to mention I'm not even sure it would be safe with me already feeling so weak and dizzy! I'm sure the GI would have a different opinion about it. I don't think a responsible GI would do a colon prep on someone already down to 101lbs without reason.

They should be able to assess by blood ESR rate and I think they can do a stool test. I won't do a colon prep at this point though!

Some doctors don't seem to understand the weak and wobbly thing with regards to preps very well. It can set you back a lot. You also have heart instability right now and that could be affected by a prep and the fast you have to do.  Make sure you stress your concerns about it but maybe they have other tests they can do for Crohn's that won't be as difficult or invasive. There is also the possibility of microscopic colitis, which can occur frequently with Celiac.  Are you sure you do not have another food intolerance, maybe to soy?  That certainly could cause the symptoms you have.  I guess you will have to make sure there is nothing physical as opposed to another intolerance.  It can be difficult and frustrating to figure it all out.  I remember the weak and wobbly period of my life and it isn't easy. I passed out a couple of times and I just hate feeling like that.  I will say that all that is past me now and it's a good feeling.  The weight will come but it takes awhile.  I am up to 110 and that's about a 16 pound weight gain, which is a lot when you are small and underweight. It makes a huge difference in stability. I do not gain easily, either, but I really eat healthy and exercise so I think that plays into it.

 

Yes, the kidney stone thingie.  My husband had a few of those himself and I spent a few visits in the ER, with me screaming at the nurses to give him something for the pain....FAST.  He was almost passing out and they weren't moving fast enough.  He ended up on morphine...given through an IV, before he got any relief.  The ER doctor told me that all the women he has treated for this, who went through childbirth, told him that having a baby with no meds was far easier than dealing with a kidney stone.  :wacko: My husband is a tough man who is no baby when it comes to pain and it brought him to his knees. Have you ever actually looked at a kidney stone?  I did...under the microscope at work and now I know why it's so painful.  Spikey little thing that grabs at and rips tissue on its way out.  :o  The good thing is he went gluten-free a few years back because I think he has a gluten problem also, which we could not find in testing, but he has not had a stone or any related problems since.  I hope it stays that way.

 

Hang in there and keep us updated on your testing.  You will get through this and get better!


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