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A Freedom Diet? Im So Lost!


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32 replies to this topic

#16 GottaSki

 
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Posted 20 October 2012 - 04:25 PM

Welcome Dijibo!

A couple thoughts:

First - that you have had improvement in very serious symptoms in just three weeks is fantastic and seems that you may be on the right path.

My guess is most of the improvement has come from removing all grains. The term "flour free" is confusing and I think if you search for "grain free" recipes you will find many solutions to your questions. "Paleo" or "SCD" recipes should give you some ideas - a year ago I had no idea I could make something very close to fried rice from cauliflower or that coconut flour would be the one flour I would be able to use to make muffins.

I have personally researched dietary connection to autoimmune symptoms for three years. This research led me to removing all foods with high lectin content - many of the same foods that you have removed or you have been told to remove.

The easiest way to tackle this is to stick with whole foods: meat, vegies, fruit (except for citrus - your term "tropical" is confusing - I can't eat citrus and pineapple as it is very hard on my healing gut, but can eat banana, mango and coconut items). Avoid ALL processed foods for now - trying to find processed items that fit a very restrictive diet just causes extreme frustration.

I know it is hard to have patience, but the symptoms you are talking about often take a very long time to improve. It is possible that you were not gluten free long enough to know if the diet was having a positive effect. It likely took many years to cause the damage to your digestive system - unfortunately it can take months or years to heal it.

Hang in there - keep asking questions and check out some Paleo recipes.

Good Luck :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#17 tarnalberry

 
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Posted 20 October 2012 - 05:50 PM

as others have noted, we're not trying to be mean.
I want to be totally clear - I'm not trying to say that you don't have to cut out anything other than gluten. I'm not trying to say that a grain-free diet is a bad choice. I'm just trying to say that you need to understand what your diet is about.

It doesn't make ANY sense to say "no almond flour but almonds are ok" because, by the time they reach your stomach, they are the same. (There's no heat processing in making almond flour - especially if you make your own. It's just a blender doing the grinding rather than your teeth. I believe coconut flour is made in a similar fashion.)

And if heating of enzymes is the issue, then all food would need to be eaten raw, especially plants. (Only some enzymes are actually ACTIVATED by cooking, while others are destroyed, though often only partially.)

All that said, stick to natural foods, little processing, and you can eliminate all of those things. I don't bake all that often (and usually only use almond flour anyway), am gluten and dairy free, and don't eat a lot of soy, so I think 80% of what I eat meets those requirements (especially now as tropical fruits aren't in season). Stir fries (you don't have to use soy sauce - garlic and red peppers are great with most veggies/meats), soups (chicken-rice, lentil, pumpkin), stew (you don't have to thicken it, or can use potato already in it), salads (with or without meat), fruit, nuts.
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Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#18 Oscar

 
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Posted 20 October 2012 - 06:09 PM

Dejibo, I think that people here are truly trying to support you. They are just flabbergasted by the inconsistencies in what your various doctors are telling you. Perhaps there are too many cooks to make a soup.

You don't want to stand up to a doctor--maybe you have been there and have beaten down. Many have.

I am going to suggest a concept I learned a long, long time ago for situations where the rules don't make logical sense. It is called malicious obedience. You follow the exact word of the rule, while at the same time defying it.

You are forbidden to have almond flour, or almond butter. Obey.

You are allowed to have whole almonds. Make them part of your food. After you add the whole almonds to your ingredients, grind them to a powder. Your ingredient is still "whole almonds." Use a mortar and pestle, or a grinding machine.
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"The three-martini lunch is the epitome of American efficiency. Where else can you get an earful, a bellyful and a snootful at the same time?" ~ Gerald R. Ford

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#19 pricklypear1971

 
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Posted 20 October 2012 - 06:45 PM

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
  • 1
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#20 GFinDC

 
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Posted 20 October 2012 - 07:18 PM

Hi Dejibo,

The paleo diet is grain free. You can find many recipes for it. I imagine your doc is talking about possible nutrient destruction during the grinding process for flours. That makes some sens e to me, I think I read about that many years ago in relation to wheat flour. The other side of that is that when you bake something with the flour you are heating it up pretty good right there. Never mind, just wondering about it myself now. (envision head scratching emoticon here). Anyway, going flour free for a while sure isn't going to hurt you any. People don't need flour to live. Unless they are the Pillsbury doughboy and are made of flour! I'd like to just poke that doughboy in the belly sometimes. :)

Paleo is pretty simple really. Meats and veggies, maybe some fruit and nuts and eggs. Just cook and use those items however you like. Here is a recent thread on easy meals with some ideas. These may not meet all your diet requirements.

Super Easy Meal Ideas Anyone?


There are breakfast, lunch and dinner threads in the list below. Again, these may not meet all your requirements , as they are for celiacs in general, not especially tailored for one individual. But you can ignore the meal ideas that don't work for you.

Trying to follow your doctors recommended diet is not a bad thing in many cases. But sometimes doctors do give bad advice when it comes to celiac disease, as we have seen repeatedly on this board. That's why we ask questions, we are just trying to understand so we can help. But paleo seems to be a pretty good fit for your diet requirements right now.

Just because you "flunk" the celiac disease tests doesn't mean you don't have celiac. Unfortunately the current test available are very accurate for positive results, but have lower accuracy for negative results. So positive is almost always right, but a negative is less likely to be right. We generally recommend people try the gluten-free diet regardless of test results, because of the possible testing inaccuracies. There are also non-celiac wheat or gluten conditions possible that have no tests at all right now.

Well, I hope some of this helps and you start getting better. A major diet change can be difficult to adjust to but you can do it. Sometimes people with celiac have a lot of food intolerances at first but then go away or become less symptomatic over time. Dairy is probably the most common intolerance among celiacs. Weight gain is also something that happens to some people. Seems strange but some people with celiac actually put on weight instead of losing it. Many doctors don't recognize this as a possibility yet.

Regardless, eating gluten-free will not hurt you and may be very helpful. There's a lot of reading in the thread links below.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#21 AnnJay

 
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Posted 31 October 2012 - 09:21 PM

Hi Dejibo,

I know what you mean about trying to cope with a sudden change in diet. That has happened to me, too. Sometimes I salivate over baked items, and I just have to remind myself that one day I may be able to eat them again.

Meanwhile, it's "whole foods" for us. Meat, veggies, some fruits. Eggs. I also eat nuts, and I do liquefy them in my vitamixer to make a nut milk (like what one might buy at the store) and add fruits to it for smoothies. That is sometimes breakfast. Other times it's bacon, eggs, eggs cooked with vegetables and some Canadian ham thrown in for added protein. Canadian ham that is gluten free, corn free, soy free, dairy free, etc. as my list goes.

I make chicken soup and use the broth and cooked veggies with other cooked veggies to make a thick soup. Meat and veggies in the crock pot or braised make a nice stew. I've googled paleo recipes and found many that work for me. There may be too many nuts for you but it might be easier than sifting through other recipe sites.

Hopefully after a bit of time you will see results from your efforts!
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#22 Juliebove

 
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Posted 01 November 2012 - 03:16 AM

I am sorry if this seems confusing, but my MD said NO flours. not grain, not wheat, not nut, not soy, not coconut NO flour of any kind. it is very difficult for an inflamed intestine to digest, and they have removed it from my list of approved foods. its not a matter of preference, or gluten, or even vegan its just that my gut is so upset and inflamed and gastroparesis is the ruler of the day that ALL flours have been removed.

I dont know why they removed tropical fruit and not apples. They spoke of how the tropical fruit is grown in extremely hot climates and that causes a concentration of the fruit sugars which is harder to digest than a regular fruit such as apple or pear.

I dont have the full technical details that everyone seems to be clamoring for. I just know that my MD said NONE, and I pushed really hard to include something anything of flour so that I could eat baked goods, but was told no flour of any kind should be tolerated right now. Perhaps after my gut heals I can reintroduce a nut flour or a gluten free flour, but for now, none at all.

Clear as mud? to me too! All I know is what my restrictions are, and I am working ever so hard to stay afloat with them. I appreciate the inquiry, but all I know is that I have been cut off from many of my fav products and I went thru some nasty withdrawl/detox stuff. I hope to get my tummy working soon.

thanks for the help.


The flour thing just makes no sense. Assuming that one does not have celiac or a wheat/gluten intolerance, then white bread should be perfectly fine as should plain crackers. Not only are they easy to digest but they are foods that are recommended for an upset stomach. White rice, tapioca or potato flours are easily digested too. Unless of course one has an issue with these foods. Perhaps you need to see a gastroenertologist? Or perhaps there is something to do with MS that we just are not getting or you are not explaining well?
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#23 Juliebove

 
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Posted 01 November 2012 - 03:19 AM

To be honest, I don't see why blended almonds would be hard for a gut to digest if it can digest whole almonds. Posted Image Not to mention, you can have almond butter which is also blended almonds. I think you should ask your doctor for further explanation about this matter, because it just seems really off.


Yeah. But frankly with gastroparesis, almonds in any form could be problematic due to their fiber and fat content. Since I am intolereant to almonds I do not eat them in any form. But I do know if I eat too much peanut butter at once, it will come right back up.
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#24 Juliebove

 
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Posted 01 November 2012 - 03:27 AM

Thank you for all of the great replies.

Let me try to explain a bit more.

I am doing a flour free, Dairy free, Soy free, sugar free, tropical fruit free diet because I have MS, Gastroparesis, allergies, bloating, constipation, psoriasis, survived breast cancer, and my inflammation markers are off the charts. My biopsy came back negative 3 times for celiac. I have been struggling along under the assumption that gluten wasnt hurting me, and that I didnt have much sugar in my diet, so who cared? and that since I was eating clean, healthy and what I believed to be an organic style of life, that I was good and diet wasnt my issue. WRONG! I started seeing a naturopath when my MS slid out of control and my inflammation markers went wild. She believed that I was having a reaction to at least dairy, if not gluten as well, but in order to completely bring to a halt all of the stuff that was going on, I was placed on what she called the "freedom diet" and she removed all of the above from me. I started seeing a nice chiropractor who is a macrobiotic vegan, and his wife is a macrobiotic vegan chef of some sort, so he and the naturopath got in cahoots with each other and that is where this twisted tale begins.

It was a rough go at first, and yes it was very hard to remove so many things from my diet so quickly and since I tested positive for thrush and other organisms in my gut I was/still am going thru a detox phase as the buggars die out and their toxins get removed by my immune system. any little change to an MS patient can cause big swings in our disease. I am lucky in that my adopted daughter IS a Celiac patient and she has grown quite knowledgeable thru the years about what this or that does or doesnt do.

I am under the care of several MDs, and I am under the care of a naturopath and other alternative health care providers so my care is coordinated, but it was confusing as I stepped into this world full of cognitive fog, confusion, detox, anger, depression, anxiety, and a whole host of other issues.

I will be wandering the site looking for Dairy free/flour free recipes. It was not that I woke one morning and said Hmm...let me try this. The MD handed it to me and said NO MORE! I said what about a gluten free diet, and was told NO! do not eat ANY flour. not rice, corn, tapioca, bean, or the like. To take any food and grind it into a flour causes heat to destroy the product and you are eating a dead food that is very difficult on an inflamed gut to process. Eventually I am told that I may or may not be able to add back in some gluten free products but for now, NONE. I will probably never get my dairy back, and I miss it greatly. I can use natural products to sweeten like maple syrup or honey, but no sugar. Nothing refined at all in my diet.

I have been stuck at a weight that has been higher than I would like for a long time now, and no matter what I do it wont shift. I have tried diets, exercise, restrictions and so forth with no results beyond two pounds forward and then two pounds back. I have lost 12 pounds in the last 3 weeks. so, this must be either triggering something or im starving. My adopted kid has been wonderful at helping me figure out high nutrition foods that pack a punch so I am not constantly hungry or trying to figure out what to eat after I hit the low blood sugar slide.

Thanks for the support. I will check out the links.


Oh wow! This flour thing is even making less sense now. Using this theory then any cooked food would be *dead*. That would pretty much mean going on a raw vegan diet. And I did try that but trust me it does not work for gastroparesis.

I saw a link recently that says they have now found that all cooked foods have more nutrients in them than raw ones. Let me see if I can find it. I'm not sure if this is it but it is one such link:

http://news.consumer...nutritious.html
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#25 Juliebove

 
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Posted 01 November 2012 - 03:34 AM

I think you're doctor is offering you bad advice. Not just "not mainstream", but "has no scientific support". If you don't understand the diet, how can you follow it?


I must agree with you there. I have been given much bad advice from Drs. and mostly I won't take dietary advice from them. When my daughter was first diagnosed with a wheat/gluten allergy, the Dr. told me to give her spelt. So I ran out and bought spelt bread. Imagine my surprise when she got sick to her stomach! I didn't realize that spelt was wheat. Another Dr. told me that she could have sprouted grains because the sprouting turns them into a live food. And it might but they do make ya just as sick.

I am sure there is something we are not "getting" about all of this. But without knowing the whys and wherefors, I don't think we will. I don't know a lot about MS. One of my daughter's dance teachers has it and another has something similar to it. I don't think either one follows a special diet unless perhaps they are having a flare up.

I myself have gastroparesis and I also have psoriasis. I have not noticed that any specific foods affect my psoriasis but some people do find an issue with wheat.

I wish I could be of more help but when something doesn't make sense to me, I question it.
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#26 Dejibo

 
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Posted 01 November 2012 - 05:08 AM

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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#27 kareng

 
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Posted 01 November 2012 - 05:37 AM

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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#28 IrishHeart

 
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Posted 01 November 2012 - 06:40 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#29 GFinDC

 
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Posted 01 November 2012 - 06:47 AM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#30 GottaSki

 
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Posted 01 November 2012 - 06:53 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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