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      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

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Thank you for your replies everybody.

My cardiologist says I have a mild-moderate leak in my tricuspid valve that needs to be monitored. I'm full of symptoms right now and seeing my regular doctor tomorrow. Don't know if the summer heat plays in (and I'm sure stress does) but it feels like I have hot stickers rattling through my body. It's truly shaking me down. I am having difficulty turning down the internal heat and have become fearful of it. I'm rubbing my thymus, drinking cucumber water and sarsaparilla tea. I put my feet in water and am cooled. I am eating every three hours to reduce stress to my adrenals. Those hot stickers go through my heart and I'm concerned about inflammation. It feels like something I should get under control immediately. Saturday my head felt like it had fallen asleep and I was so scared from the symptoms, I was in bed all day (that was before getting my echo results). It makes me wonder if I have another AI or if I'm having adrenal issues. I have no idea.

Most of all, I feel desperate to reduce the inflammation in my body because I know it's not good for the heart. I had reintroduced some intolerant foods in March and it's been downhill ever since. I am back on my safe foods only but am having symptoms with some of those now. Any suggestions for reducing inflammation would be appreciated. It feels crucial.

*Edit: And no, I did not shoot up with street drugs. That previous cardiologist told me not to shoot up with street drugs and I'd be fine. No follow up. No nothing. What a jerk.

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I've been doing testing for irregular heartbeats this week.  Same kind of thing, feeling butterflies/bubbles in my chest.  Wore the Holter Monitor for 24 hours and it confirmed I have some irregular heartbeats, about 10% of my beats are "off".  Since I'm also recently diagnosed with Celiac and Sleep Apnea, my Dr. wants to wait to start any meds, beta blockers, to see if going off gluten and getting better sleep help.  I am tired ALL the time.  I wish I could sleep for 12 hours...but even then, I probably would still be tired.  They decided to check me when my heart rate was 35 while doing my sleep study.  With my Monitor, my heart rates were between 40-81, with activity, walked about 5 miles during the day with it on, including climbing several flights of stairs.

 

I'm not sure where you live, but when you have multiple conditions, it might be worth a trip to Mayo to have everything checked out at once.  My endo discovered my Celiacs during a "lets just make sure" test order.  They will check everything, run tests you probably have never heard of and try to get to the bottom of things for you.  It's an amazing place and I just can't recommend their medical model enough when you have multiple issues.  Typically they check you in on a Monday morning and you will get a physical and discuss your history and reasons for being there.  They will make recommendations about testing and other dr's to see.  Usually you spend an hour or so doing that.  Then they do the actual physical exam and if they find something else, etc. they add that.  By the time you are dressed and ready to talk to the dr again, you have a multi-page itinerary for your next several days with your lab work, dr appointments, etc. on there.  Appointments are added and deleted during your stay as necessary.  I"d suggest starting with an appointment with the endocrinology department, mainly because they act at a "primary" doctor and since your endocrine system may be suspect, you have to start somewhere :D.   During my visit I've met with my endo, 3 GI dr's, 2 dietitians, did a sleep study, met with the sleep team to learn about using a CPAP (which has helped a lot), had 7 pages of labs done, an endoscope, bone density testing, cardiology consult......you get the idea :D.  Good luck!!!

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My inflammation seemed to have been related to my lymph system reacting to foods added back to my diet.  I thought back to when I got sick and tried to eat only foods that I had not eaten during the coarse of my illness.  I found new foods and ate them.  It seems to be working.  If you know which foods you have antibodies to, you can stop eating them.

 

To move lymph, exercise is a good thing I have learned.  I started with squats, sit-ups and push ups.  I began a rebounding routine.  In the summer I need to skip that at times.  I garden and walk the kitchen to freeze the produce.

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My inflammation seemed to have been related to my lymph system reacting to foods added back to my diet. I thought back to when I got sick and tried to eat only foods that I had not eaten during the coarse of my illness. I found new foods and ate them. It seems to be working. If you know which foods you have antibodies to, you can stop eating them.

To move lymph, exercise is a good thing I have learned. I started with squats, sit-ups and push ups. I began a rebounding routine. In the summer I need to skip that at times. I garden and walk the kitchen to freeze the produce.

I've been doing testing for irregular heartbeats this week. Same kind of thing, feeling butterflies/bubbles in my chest. Wore the Holter Monitor for 24 hours and it confirmed I have some irregular heartbeats, about 10% of my beats are "off". Since I'm also recently diagnosed with Celiac and Sleep Apnea, my Dr. wants to wait to start any meds, beta blockers, to see if going off gluten and getting better sleep help. I am tired ALL the time. I wish I could sleep for 12 hours...but even then, I probably would still be tired. They decided to check me when my heart rate was 35 while doing my sleep study. With my Monitor, my heart rates were between 40-81, with activity, walked about 5 miles during the day with it on, including climbing several flights of stairs.

I'm not sure where you live, but when you have multiple conditions, it might be worth a trip to Mayo to have everything checked out at once. My endo discovered my Celiacs during a "lets just make sure" test order. They will check everything, run tests you probably have never heard of and try to get to the bottom of things for you. It's an amazing place and I just can't recommend their medical model enough when you have multiple issues. Typically they check you in on a Monday morning and you will get a physical and discuss your history and reasons for being there. They will make recommendations about testing and other dr's to see. Usually you spend an hour or so doing that. Then they do the actual physical exam and if they find something else, etc. they add that. By the time you are dressed and ready to talk to the dr again, you have a multi-page itinerary for your next several days with your lab work, dr appointments, etc. on there. Appointments are added and deleted during your stay as necessary. I"d suggest starting with an appointment with the endocrinology department, mainly because they act at a "primary" doctor and since your endocrine system may be suspect, you have to start somewhere :D. During my visit I've met with my endo, 3 GI dr's, 2 dietitians, did a sleep study, met with the sleep team to learn about using a CPAP (which has helped a lot), had 7 pages of labs done, an endoscope, bone density testing, cardiology consult......you get the idea :D. Good luck!!!

Thank you! I wish I had gone through Mayo years ago when a friend of mine recommended it. At the time, I was too ill to figure much out. Looks like the closest one is in Arizona. My doctor is waiting to be certified by Mayo and I assume that means certain testing will be available to her. I had so many doctors at one time who couldn't figure much out and all private practice. It would have been nice to go through a systematic process with a team approach as it sounds like Mayo provides. My cardiologist was going to have me wear a holter. Beating my chest 3-4 xs a day, as odd as it sounds, is raising my heart rate and BP so she wants to see how that pans out.

Interestingly, my doctor sent me home with an at-home sleep test a few months ago. You just motivated me to do it! There are a few more tests she's going to run in the next week. She wants me to push over the hump (employ mind/body healthy practices). She has also referred me to a naturopath who she hopes can help me with reactivity.

I received my bone density test results yesterday and must begin weight bearing exercises. It's tricky avoiding the heat and the "boom boom" gym across the street would send me to the ceiling. Weightlifting never steered me wrong (an old love affair) and so will start with some dumbbells at the house. This should motivate me towards light cardio.

Last night I drank some adaptogen tea that was very relaxing and calming to the nerves. I'm going to research it more. The only thing bothering me right now is my elbow because I slept hard on it all night.

You guy's support really helps. :)

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