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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 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.

Fluid Retention
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6 posts in this topic

This is my first post to this forum, but I have been reading it for quite a while.  I have a dilemna that I hope someone else has experienced and can help me with.

 

I have celiac disease, diabetes, and have an artificial heart valve.  After my heart surgery, there were complications and I was in the hospital for 6 weeks.  My kidneys and liver shut down, leaving me with some kidney damage.

 

I have been on diuretics since the heart surgery - I take a half dose of HZT, a small dose of spironolactone, and Torsemide.  I am allergic to sulpha drugs and am very resistant to Lasix and Torsemide.

 

I have this weird thing going on.  At home I will retain fluid and my legs, ankles, and feet will swell.  Nothing seems to help.  I am on a low sodium diet and cook at home (because of that and the celiac disease).  I am very, very, very careful with sodium, and, yet, still I swell.

 

However, when I travel with my husband, I lose weight.  Within 24 hours of leaving home, I usually start shedding fluid and will loose up to 10 pounds in just a few days.  We were gone two nights last weekend and I dropped 5 pounds.  This is with us eating out.  I have "the talk" with the waiter about the gluten free and the sodium, but I know I'm getting more sodium than I do at home.

 

I eat more when we are away - usually three times a day.  At home, I tend to not eat very much at all.  The doctors have said that it must be that I get more exercise when we are away, but that isn't always so.  My husband was in a conference last weekend, and very tired, so we stayed in the hotel except when we went to eat.  It was a very quiet weekend.

 

I've told my doctors this repeatedly, but they just tell me that this doesn't make any sense.  My kidney specialist listens and accepts what I say, but has no suggestions.

 

I'm at my wits end trying to figure out what is different about when we travel, and what I can do differently at home to help prevent the swelling.  I would think it might be the water, but this happens consistently no matter where we go.

 

Does anyone have any ideas?  Help!

 

Thanks!

 

 

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I don't have experience with your type of medical issues but I'll give it a whirl.

1) you could be altering your diet in some way when on the road that is not obvious to you. Try a food diary next time.

2) you could be drinking less/more without realizing it.

3) you could be skipping meds or taking them at different times.

4) altitude?

5) environmental allergy?

6) try wearing a pedometer to see if you really are moving more on the road.

7) does one position (sitting, laying) or piece of furniture cause you swelling?

8) does your house have tile floors and you walk barefoot?

I'm reaching here....

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Perhaps you need to eat more often at home, and your body is responding positively to mire frequent meals while on the road?

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I think environmental allergy.

Black molds, any specific household chemicals, pesticides, dust mites?

Tap water? (contains chlorine that is very aggressive for pancreas and kidneys.

Buy albustics proteine dipsticks to measure albumin loss through urine - this couold be very indicative to any allergen. Log and regular measurement would allow you to find your allergen at home

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Thank you so much for your replies!

 

Pricklypear, the medicine is part of the puzzle.  I don't take as much when we are traveling, and I don't take it at regular times like I do at home.  I don't take the diuretics if we're flying - or driving a long way where restrooms might not be readily available.  I take it when we get where we're going, but sometimes I don't get all my doses in for the day.  That has really puzzled me.  When I'm at home, I take my medicine on a regular schedule.  It's almost as if the diuretics are hurting, not helping. 

 

And you may be exactly right that my body responds better to regular, larger meals.  A nutritionist affiliated with a doctor I saw told me that I don't eat enough.  It's just scary and exhausting sometimes trying to figure out what I can eat with all the restrictions.

 

And you're right about the ceramic floors!  I don't go barefoot, though.  I always have houseshoes on.

 

ValeriaZ, good point about the chlorine.  Would filtering my water be the best way to get rid of that?

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A small subset of persons don't do well with hyper limiting of salt....getting ready for work, can't research for you  right now. but give that a shot.   could be protein def. too.

Thank you so much for your replies!

 

Pricklypear, the medicine is part of the puzzle.  I don't take as much when we are traveling, and I don't take it at regular times like I do at home.  I don't take the diuretics if we're flying - or driving a long way where restrooms might not be readily available.  I take it when we get where we're going, but sometimes I don't get all my doses in for the day.  That has really puzzled me.  When I'm at home, I take my medicine on a regular schedule.  It's almost as if the diuretics are hurting, not helping. 

 

And you may be exactly right that my body responds better to regular, larger meals.  A nutritionist affiliated with a doctor I saw told me that I don't eat enough.  It's just scary and exhausting sometimes trying to figure out what I can eat with all the restrictions.

 

And you're right about the ceramic floors!  I don't go barefoot, though.  I always have houseshoes on.

 

ValeriaZ, good point about the chlorine.  Would filtering my water be the best way to get rid of that?

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