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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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Hemochromatosis + Fructose-Free, Gluten-Free Diet = Fun Times

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I'm a 35-year-old woman with hereditary hemochromatosis. I'm supposed to have zero problems til menopause, but in my 20s I had severe iron overload.

After the bloodlettings, things went along OK. But now I'm diagnosed celiac and gluten-free...and my celiac anemia tendencies are removed, allowing the iron free rein in my system. It's running in my system like toddlers after cake.

So I feel like crap. Yay. Thanks, genes.

BUT I also have crazy high blood sugar after eating. This is an Easter egg for iron overload. And since all fructose causes bad things to happen for me (extreme leaky gut issue or hereditary fructose intolerance? Hopefully I'll get some answers soon.) I have to eat only white rice, safe fats, and lean meat/fish.

So, basically, a starch-rich diet with tons of iron. Yay once again. Ooh, or mercury, since I hate all seafood but tuna.

Did I mention I'm dangerously underweight? And I lost even more when I stupidly tried the SCD thinking this was all just SIBO. I'm up to 99 lbs (I'm 5'2") but I can't both control my blood sugar spikes AND eat enough extra calories to gain weight. Since I feel awful when my blood sugar's above 130, guess which one wins out.

Ironically, if I was my proper weight I could just saunter over to a blood bank and shed the excess iron. But with my current condition I'd just do what I always do when someone tries to take a full bag of my blood--pass out. No thanks.

Am I complaining? No, I'm blogging. Complaining would be explaining to my coworkers exactly why I can't eat the constant snacks in the kitchen, in meticulous, medical detail.

Hells bells, this is a crazy runaround of intestinal delights. Looks like I'll have lots to talk about at Mayo next month.
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Could your doctor draw smaller amounts of blood for you?  I had much better luck gaining weight when I started eating beef two meals a day. I gained three pounds a week, when I had trouble maintaining my weight before that. 

Also, where are all the vegetables?  Eating white rice is going to make your blood sugar spike -- you don't have fiber to slow the absorption of the carbohydrates.  Have you seen a dietician?

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I've been gluten free for 14 years.  What you're going through sounds like what I went through although I

don't have hemochromatosis or blood sugar problems.  I've become happy and healthy by studying the

anti nutrients in foods and how to nutralize them.  This can be very complicated but I'll start with simple

diet suggestions that may help.  I would get away from all grains, seeds and beans including rice.  My

diet is very similar to the "Paleo" diet.  I have found many starches that can be made easily digestable

by cooking them well.  There are many kinds of sweet potatoes, taro and cassava that are very good and

may be better for you than rice.  I would stay away from regular potatoes and true yams because they

have some pretty indestructable anti nutrients.  You can look  up taro, cassava and sweet potatoes on the internet, find out what they look like and how to cook them.  I'm sure you can find these in Japan. 


Another first step towards the healing process is bone broth or stock.  A good chicken soup from boiled

chicken bones is a great start.  Because you are nutrient depleted at this point, your body is reacting to

even small food challanges so you have to be careful as to what you put in the soup.  Avoid pepper and

any food from the nightshade family (peppers, tomatoes, potatoes and eggplant).  Some great veggies to

start with would be carrots, swiss chard, broccoli and baby taro (malanga).  Avoid any kind of onions or garlic. Some great herbs would be Celery, parsley, basil, and thyme. 


I've found that taking an amino acid supplement really helps your entire body to get stronger.  It needs to

be "free form" amino acids that only contain the basic amino acids that the body requires-no amino

metabolites.  I use solgar free form amino acids but there are other brands out there.  I also don't eat the

gel cap but put the contents onto a spoon and ingest the powder with water. 


Most plant foods contain anti nutrients but many can be neutralized by fermenting and cooking or both.

I would stay on this veggie-low iron meat-tuber diet for at least three days.  This gives the digestive

system time to slough off any anti nutrients that are hanging around and causing trouble.  You may also

experience back pain durring this time but it will only last for three days.  I think this is because some

anti nutrients from rice tend to stick to nervous tissue. 


After three days and if you're not allergic to tree nuts, you can add cashews, almonds and coconut to your diet.  Coconut can be eaten raw or cooked and coconut milk is rich and delicious.  Almonds and

cashews contain an anti nutrient called phytic acid and need to be treated.  I soak cashews for a day and then put them in my food processor with some coconut cream, a little salt and a spoon full of lemon juice.  I add an acidophilus pill to this mixture to aid the fermentation process.  I just dump the contents

of the gel cap into the mixture.  By using these probiotic pills, I ensure a good outcome and don't have to

make whey as a starter culture.  I'm dairy free as well .  I then ferment the mixture for a day and then

refrigerate.  I take raw almonds and soak them for a day and then blanch them and hull them.  Then I

Put them in my dehydrator for a few hours and add salt.  


You may want to look up "chitin binding lectins", on the internet.  These anti nutrients can keep people

who are gluten free from feeling really great. 


There are many anti nutrients out there that cause nasty symptoms.  If this has been of any help, I could talk further on the subject at a future date.  I know how hopeless you can feel when you can't seem to find an answer to get better and I have spent many years searching.  Your situation is very complicated

and this may not be the right path, but I hope you find success with whatever path you take. 

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