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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help! Always been so active, but now really struggling! I have so many questions!
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30 posts in this topic

Hi Cara,

Since I no longer get the horrendous headaches that can go with migraines, I just try to keep functioning. If I get an aura it lasts about 30 minutes but most of that time I can still see pretty well.  If I get the loss of vision that only lasts about 5 minutes.   In fact, I find they are less bothersome and I feel less "blah" if I keep working than if I take time off to rest.  I very rarely cancel activities because of them.  Mine did lessen when I stopped oral contraceptives so hopefully that and going gluten free will help you.  Unfortunately I do find that too much chocolate is a trigger for me :(

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Hi Cara,

You got it right, staying on gluten until testing is complete is very important.  Celiac disease is an autoimmune condition and the testing is looking for antibodies (blood tests) or the damage caused by antibodies (endoscopic biopsy).  Since the antibodies start to decline after going gluten-free, the testing results are affected.

Celiac disease can damage the lining fo the small intestine, which then makes it hard to absorb nutrients our bodies need to function.  So we can get symptoms of vitamin and mineral deficiency and also plain old fatigue from not having enough food for our cells to eat.  Celiac  can be kind of like starving on an all you can eat buffet.  Lack of nutrients can affect every organ of our bodies and their functions.  So there are many different symptoms that people can get.

Once you go gluten-free the the immune response should begin to taper off.  But it doesn't stop on a dime, or in a few days.  It can take weeks or months to stop.  So your gut will start to heal and you will start to absorb nutrients better, but not instantly.  Any crumb or tiny amount of gluten can kick the immune response into high gear again.  We call that getting glutened.

A great way to start the gluten-free diet is to eat whole foods, like meats, nuts, veggies, and eggs.  Skip the dairy for a few months.  Also avoid any processed foods for a while and sugar and carbs.  Eating simple foods that are easy to digest is helpful.  It's also nice not to have spend a lot of time reading through ingredient lists and interpreting what might be gluten, rye, or barley.  Around 10% of us also react to oats so it is best to avoid them at first.

The University of Chicago celiac center has a good FAQ on celiac that might help.

http://www.cureceliacdisease.org/faqs/

Welcome to the forum Cara! :)

Edited by GFinDC
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Also keep in mind that doctors usually do the cheapest test, which is not the most accurate.  Just because they tell you the blood test is negative, doesn't mean you aren't at the very least SENSITIVE to gluten.  Gluten is not essential for existence and all grains are rather poorly tolerated by many people.  Grains also leach out important nutrients, that's why it was mandated many, many years ago that manufacturers "fortify" all grains, cereals, etc. to try and put back what they leach out of our bodies.  Sticking to whole foods really is the simplest.  The packaged gluten free items are really high in starches(carbs) and that will aggravate migraines too.  Figuring out I was sensitive to gluten was the best thing that has happened to me.  That led me to read more and find out the other things in my diet that weren't doing me any favors, like soy, dairy, carbs and legumes.  I took Amitriptyline many years ago and no matter how small a dose I took, I felt hung over the next day!  Since going gluten/soy/dairy/legume/mostly carb - free.... I finally got rid of the antidepressants I had taken for so many years... along with the acid reflux medicine.  We just eat meat and a couple veggies and we're good to go!  Add butter liberally!  Spices make everything taste great, but beware there is wheat in many of them as fillers.  It's a learning curve.  You'll get the hang of it!

Debbie

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10 hours ago, deb_rn said:

 Grains also leach out important nutrients, that's why it was mandated many, many years ago that manufacturers "fortify" all grains, cereals, etc. to try and put back what they leach out of our bodies.  

Refined grains are fortified because valuable nutrients are removed during the refining process (for example when making white flour out of whole wheat).  They do not remove nutrients from our bodies.

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I think others have covered most of your questions, but I thought I would chime in on the sports part. I am a fairly elite level distance runner and ran on my university team throughout undergrad. Retrospectively, it is obvious to me that having undiagnosed celiac disease had a huge impact on my ability to train and compete consistently, but I still managed to achieve quite a lot during this time. To be honest, when I accidentally gluten myself and take stock of how bad I feel, I am completely shocked that I was even able to train seriously at all.

I think the key is respecting recovery for endurance training - with celiac and without. Even before I knew what exactly was wrong, it was obvious to me that my capacity to recover from hard training efforts was unreasonably low. For a while I tried to push through this, but this ended with me essentially lying in bed for weeks at a time because I was so sick, which was frustrating. After a year of this, I figured out the bounds of intensity that my undiagnosed celiac self could tolerate without implosion. I seemed to be able to handle the same training volume, but high intensity efforts and races left me crushed. This "speed limit" strategy was not ideal, but it was what I did to survive the situation - varsity sports are a high pressure environment, and despite trying to get answers from doctors, I got none (because apparently being able to run for more than 30 minutes consecutively means that it's impossible to be seriously ill according to most doctors :| ).

Anyways, flash forward to what happened when I started the GFD and recovery. It took about a month for me to notice a huge difference in my running. I still wasn't entirely healed by any means, but it felt as if someone has lifted a weight from my back (this was not literal as my weight didn't change). It was the most encouraging feeling. Despite feeling a lot better, I maintained my previous protocol because I knew that my body needed to focus on healing itself from the years of damage. I tried to focus on having fun during workouts and not timing myself. I also began training by myself to remove any comparison I might have inadvertently made between myself and my teammates.

I would definitely recommend continuing with triathlon. I think that continuing with running and racing has been one of the few joys I've had since diagnosis. It allows you to feel safe, normal, empowered and keeps your body in better condition to fight the disease. Best of luck.

 

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