• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Still In Limbo, More Symptoms Weekly!
0

12 posts in this topic

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
Ads by Google:


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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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

Have a look at this:  http://glutenfreeworks.com/blog/2010/11/17/kidney-stones-renal-calculus-causes-treatment-in-celiac-disease/#.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.menshealth.com/mhlists/foods_that_build_muscle/Eggs_The_Perfect_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!  ;)

0

Share this post


Link to post
Share on other sites

Have a look at this: http://glutenfreeworks.com/blog/2010/11/17/kidney-stones-renal-calculus-causes-treatment-in-celiac-disease/#.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.menshealth.com/mhlists/foods_that_build_muscle/Eggs_The_Perfect_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!

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,391
    • Total Posts
      935,838
  • Member Statistics

    • Total Members
      65,077
    • Most Online
      3,093

    Newest Member
    MayonnaisePlease
    Joined
  • Popular Now

  • Topics

  • Posts

    • First have you been tested for celiac disease? Any doctor can do the blood test but you have to be eating gluten on a daily basis for the test to work, nut much just a half slice of bread a day. You should get this tested, the high constipation, coughing stuff up was very common for me before diagnosis. The coughing stuff up for me was from a allergy that developed I did not know of, the mucus was draining down my throat and choking me at times, and was constantly running a fever and night sweats. I was constipated for 4-10 days average back then and drinking plenty of liquids did not help in the least. Your gut rumbling could be many things, celiac is one, SIBO is another especially with the bad breath. in your case it could be related to constipation causing rotting, fermenting, and bacterial overgrowth of the waste in your system. Now to deal with the immediate symptoms, your constipation is also a sign of magnesium deficiency, I imagine you might have noticed some other symptoms from these. Now normally I would suggest either the Natural Vitality Calm or Doctors Best which is easier on the stomach. In your case I straight up suggest the Natural Vitality Calm it is a Magnesium Citrate and works a bit like a laxative. Start with 1/4 tsp twice a day in a beverage, I like the orange or the cherry in a hot green tea or you can try it in a juice. Up the dose slowly over a periods of a week to the full dose or perhaps a little more til you get a bit looser stool.     You mentioned the mucus in the stool 2 things cause this normally. Undigested fats, and inflammation/irritation causing the body to produce the mucus to help defend itself and purge the irritants. A doctor can probably tell you more but I might suggest a digestive enzyme in the mean time. I like to use a super papaya enzyme before and after a meal, find them on amazon. Jarrow also makes full enzyme complex that can help. Other thoughts if your on dairy, stop, with the constipation, and other issues this is a equation for trouble and you can reintroduce it in a few months when you clear up and see if it bothers you then. The bad breath can be a sign of lactose intolerance/digestive issues with dairy also. If it comes you you have celiac then you would have your explanation here as the villi which produce the enzymes to break down lactose are damaged/destroyed first causing most to develop a temporary lactose intolerance which for some goes away after a few months of healing. B-vitamin folic acid, and niacin will be a huge help also with some things. but will we get into that a bit later feel free to look up Liquid Health Stress & Energy if you thing it might be relevant at this point it is what I use 3 times a day with another blend they have.
    • Some of your symptoms sound like my ulcers.  I take carafate before every meal now and they are much better.  I have 3 ulcers possibly caused by taking iron supplements.  They are worse when I eat spicy food and dairy. I might be wrong but for your sake I hope it's just ulcers.  They were found by endoscopy.
    • The yellow is probably fat you are not absorbing.  The pain could be from your intestines being inflamed.  Go see the gastroenterologist.  The ER did not help me with any of those symptoms.  Good thing it's clear so you know it's not your appendix or any other vital organ.  It takes time but probiotics, bone broth and  vitamin D and b 12 help. My pain was mainly my muscles giving out from the malabsorption.
    • Hi, this has been a postcode lottery for some time, some health authorities support it others don't. The govt has recently indicated that doctors should no longer prescribe food to celiacs, you should check with your local GP to see if they are still doing this or not. if you want some advice on where to shop just ask  
    • @CleoTheLeoI've learned that I have a sluggish liver and that before trying to cleanse the liver, I need to make sure that the gall bladder is clear and working well, as well as the gut, so that when the liver is detoxing, the toxic wastes have an elimination route. Dr. Lam explains so many things in detail in his articles. https://www.drlam.com/blog/sluggish-liver-and-adrenal-fatigue/7854/.
  • Upcoming Events