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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.

A Freedom Diet? Im So Lost!
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33 posts in this topic

I did ask my doctor who explains that my intestine is so inflamed, upset, and over worked that he has me on what is a "modified Paleo" diet. NO GRAINS. He removed tropical fruit temporarily because of the high sugar content that is in fruits grown in a high heat situation. Oranges have much more sugar content than an apple. Since my intestine has been so injured by years of allergic response, and nerve damages from MS I have been sucking up the sugar, but leaving many good nutritiousness behind. They wanted me to do a "cave man" or "paleo" diet till it healed. After my gut has calmed tropical fruits will be added back in. It was just this last week that they called to say my inflammation markers are lower and its safe to TRY tropical stuff. Why no almond grain, yet I could have almond butter, and mechanical chewing of almonds is the same as flour no? He said that anytime you mechanically process (even hand grinding) causes heat, which destroys some of the nutrition in the product. They wanted me to have as high of a level of nutrition as possible. Its been longer than a a month. I am actually bumping that magic six weeks. I was actually not supposed to be eating raw/roasted nuts yet, but was permitted almond milk as a way to transition.

Since my daughter spoke of Paleo diets and I was able to explain myself more clearly I have a better understanding.

Thank you all for the replies. Having a name or a style of diet to research and look up is immensely helpful. I have found several good cook books and even some dessert books that I can start using 4 flours in a couple of weeks. Almond, coconut, tapioca and arrowroot starch. I am looking forward to some yummies.

I guess this goes beyond a gluten free diet as its completely grain/legume/soy free. I am also dairy free, but I can still have eggs. I was told I will be able to do some nuts but not others. Peanuts are high on the mold scale and will not be allowed, but walnuts, macadamia, almonds, pecans and such will. Things that are grown UP in a tree will be allowed, but nuts grown on or in the ground will not be. My gastro is so much better! my eczema is clearing nicely, my headaches have decreased, and my tummy is behaving better.

Thanks for the support. I am off to search for recipes.

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I did ask my doctor who explains that my intestine is so inflamed, upset, and over worked that he has me on what is a "modified Paleo" diet. NO GRAINS. He removed tropical fruit temporarily because of the high sugar content that is in fruits grown in a high heat situation. Oranges have much more sugar content than an apple. Since my intestine has been so injured by years of allergic response, and nerve damages from MS I have been sucking up the sugar, but leaving many good nutritiousness behind. They wanted me to do a "cave man" or "paleo" diet till it healed. After my gut has calmed tropical fruits will be added back in. It was just this last week that they called to say my inflammation markers are lower and its safe to TRY tropical stuff. Why no almond grain, yet I could have almond butter, and mechanical chewing of almonds is the same as flour no? He said that anytime you mechanically process (even hand grinding) causes heat, which destroys some of the nutrition in the product. They wanted me to have as high of a level of nutrition as possible. Its been longer than a a month. I am actually bumping that magic six weeks. I was actually not supposed to be eating raw/roasted nuts yet, but was permitted almond milk as a way to transition.

Since my daughter spoke of Paleo diets and I was able to explain myself more clearly I have a better understanding.

Thank you all for the replies. Having a name or a style of diet to research and look up is immensely helpful. I have found several good cook books and even some dessert books that I can start using 4 flours in a couple of weeks. Almond, coconut, tapioca and arrowroot starch. I am looking forward to some yummies.

I guess this goes beyond a gluten free diet as its completely grain/legume/soy free. I am also dairy free, but I can still have eggs. I was told I will be able to do some nuts but not others. Peanuts are high on the mold scale and will not be allowed, but walnuts, macadamia, almonds, pecans and such will. Things that are grown UP in a tree will be allowed, but nuts grown on or in the ground will not be. My gastro is so much better! my eczema is clearing nicely, my headaches have decreased, and my tummy is behaving better.

Thanks for the support. I am off to search for recipes.

As long as you are feeling better.

But you realize some of this doesn't really make sense.? You grind almonds even more to make almond butter than you do to make almond flour, as an example. Just hate to see sick people getting taken advantage of by people with little to no medical education. Glad you feel better, reading about the Paleo diet might help.

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You might enjoy visiting Elana's Pantry. She has MS and writes cookbooks; however, she uses almond and coconut flour. I suggest it because she has ms and celiac...and her site has other tidbits about autoimmune diets.

Www.elanaspantry.com

I second this wonderful idea! This woman has generously posted a quick start paleo menu and there are dozens of recipes and meal ideas on her site.

Also, one of your early posts says "many milk alternatives have soy in them".

Coconut milk and almond and rice milk do not have soy in them.

And you refer to your naturopath as an MD. She is not a medical doctor.

She may offer you some good advice, yes, but she is doing it based on her thoughts.

I spent 2 years listening to several MDs, an ND, and "functional med doctor" who had a ND sidekick- and honestly, too many cooks screw up the broth.

Choose one path and follow it.

You gave gluten-free a 6 month trial (which for many people is not long enough to see a lifetime of inflammation to resolve), then added gluten back in and things got worse.

To me, that speaks volumes.

FWIW, my friend with MS has followed a grain free, dairy free and sugar free diet for 25 years and has managed her symptoms well. She was gluten free and paleo long before any of us ever heard of it and I am amazed at her for sticking to it. Recently, she went vegan. To each his/her own.

I think you are doing all the right things. I know how difficult it is sometimes--as I have had to adjust my food list many times. I have other food intolerances besides gluten and I am a mess from many years of UnDXed celiac..

Stay the course. I hope you see more progress!.

Best wishes to you.

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The main thing is you are feekig better Dejibo. Now it wil be important for you to think about the changes in your diet and figure out what made the improvement happen. That way you can aviod eating the foods that make you sick. If you search the forum for threads on elimination diets you will find lots of ideas for doing them. They can be a big help is determining food intolerances. An elimination diet can help with your diet choices.

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Just to clarify for you - peanuts are legumes, not nuts. I actually stored this information in some tiny corner of my brain from nutrition class as a youngster - but brain fog didn't let me access it until I was educating myself about food chemistry after Celiac diagnosis.

Eliminating many food groups is tough and may not be necessary - but it can't hurt and very well may help. Not sure what your medical team will suggest, but I would not go longer than six months without trialing the removed foods individually with at least three days to a week between trials while keeping a detailed food symptom log. There are many healthy foods you may be able to reincorporate into your diet.

Good Luck :)

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Just to clarify for you - peanuts are legumes, not nuts. I actually stored this information in some tiny corner of my brain from nutrition class as a youngster - but brain fog didn't let me access it until I was educating myself about food chemistry after Celiac diagnosis.

Eliminating many food groups is tough and may not be necessary - but it can't hurt and very well may help. Not sure what your medical team will suggest, but I would not go longer than six months without trialing the removed foods individually with at least three days to a week between trials while keeping a detailed food symptom log. There are many healthy foods you may be able to reincorporate into your diet.

Good Luck :)

Exactly (peanuts are legumes, as are probably other "nuts" from the ground).

And eggs are NOT dairy (milk). They are eggs, technically a protein.

You need to educate yourself about food. You need to be able to discern if what you are reading, hearing, and doing are correct.

If someone tells you something, look it up. Does it sound reasonable? Because doctors (all types) and nutritionists toss random crap out there. Some of it is good advice, and some of it is opinion, outdated, nebulous, or just flat-out WRONG.

There are excellent resources out there for people dealing with AI issues. People who have DONE IT. Not just professionals who give advice, talk the talk, but don't walk the walk. And while professionals (MD's, MD's, nutritionists,RD's) can give excellent advice and on some days save your life, it is rare to find one who has "walked the walk".

And if more followed the advice they dished out, AI management would be light years ahead, IMO.

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I wish I could offer you help with the cookbooks or links, but I do not. I just wanted to stop in and offer a HUGE GENTLE HUG. I know it is frustrating to deal with all of this and with a foggy mind on top of it.

I hope your answers come soon!

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I've got to say that I think Dejibo is right - she came here for support and was feeling overwhelmed, and the response she got was to have her current diet picked apart and having to defend it. She didn't ask anyone what they thought of her diet. It would be one thing to have a single person gently warn about being lead astray by people with the best intentions who might or might not have the right background to help her, but to be questioned several times on its validity isn't cool. Someone asked, she answered. If this is the path she wants to take with her health, that is totally her right. If she'd asked for opinions on it it would be another thing entirely. How about some white kid gloves for someone who's been through it and is already overwhelmed. :/

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