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Elizabeth Hasselbeck


Sam Caine1

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Sam Caine1 Newbie

Thank You Elizabeth for bringing this topic out of the closet.

After my last visit to my doctor for my 3 month diabetes check-up, I returned home more frustrated than ever. After three years of changing and refining my eating to reflect the most "healthy diet" I could follow, I stll didn't lose weight and the doctor was recommending more medication.

I prayed that morning for help, because I no longer knew what to do and the additional medication was making my face rashy.

I turned on "the view" to find you talking about Celiac disease and decided to try going gluten-free. It wasn't hard, as I was getting tired of all that wholesome whole-grain bread that was suppose to be making me "healthy".

I made a list of the foods I liked, that were not wheat, barley, etc as well as the ones you listed and began looking for recipes I could cook. Within 6 weeks I have lost 15-20lbs, dropped my sugar levels so much, that my doctor has recommended cutting medication, below what it was before the rashy face; and I have a new lease on life. I can't believe the energy levels. I guess because I have had to deal with this for so long, I just got used to being tired and thought it was normal or because I was old. Except for the wheat, I was already eating well: 2-3 fruits, 4-5 Vegetables, proteins and good fats, I just had to figure what kind of complex carbs I could eat. I found they mostly come down to Root vegetables, Squashes, Corn, Beans and Rice. This is of course before I learned about all those other flours, mixes and desserts available. I now understand why I was so drawn to asian and mexican cooking. So, I've begun to look up some of those old recipes.

I thought I would crave the bread so I started my day with a high protein breakfast over the next few days and found that I not only lost my cravings for wheat I lost my cravings for sugar. I also found my natural hunger levels and found myself putting the fork down sooner. Hurray! I can't remember doing that ever. I have compusively dieted since I was a teenager only getting bigger each time. This is the first time in my life that I'm not afraid of food. I don't know if there is any proof for my theory, but I actually think the diabetes may have resulted, because the sugar has been the only thing getting though my digestion.

Has Elizabeth influenced you decision to go gluten-free?

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angel-jd1 Community Regular
Thank You Elizabeth for bringing this topic out of the closet.

After my last visit to my doctor for my 3 month diabetes check-up, I returned home more frustrated than ever. After three years of changing and refining my eating to reflect the most "healthy diet" I could follow, I stll didn't lose weight and the doctor was recommending more medication.

I prayed that morning for help, because I no longer knew what to do and the additional medication was making my face rashy.

I turned on "the view" to find you talking about Celiac disease and decided to try going gluten-free. It wasn't hard, as I was getting tired of all that wholesome whole-grain bread that was suppose to be making me "healthy".

I made a list of the foods I liked, that were not wheat, barley, etc as well as the ones you listed and began looking for recipes I could cook. Within 6 weeks I have lost 15-20lbs, dropped my sugar levels so much, that my doctor has recommended cutting medication, below what it was before the rashy face; and I have a new lease on life. I can't believe the energy levels. I guess because I have had to deal with this for so long, I just got used to being tired and thought it was normal or because I was old. Except for the wheat, I was already eating well: 2-3 fruits, 4-5 Vegetables, proteins and good fats, I just had to figure what kind of complex carbs I could eat. I found they mostly come down to Root vegetables, Squashes, Corn, Beans and Rice. This is of course before I learned about all those other flours, mixes and desserts available. I now understand why I was so drawn to asian and mexican cooking. So, I've begun to look up some of those old recipes.

I thought I would crave the bread so I started my day with a high protein breakfast over the next few days and found that I not only lost my cravings for wheat I lost my cravings for sugar. I also found my natural hunger levels and found myself putting the fork down sooner. Hurray! I can't remember doing that ever. I have compusively dieted since I was a teenager only getting bigger each time. This is the first time in my life that I'm not afraid of food. I don't know if there is any proof for my theory, but I actually think the diabetes may have resulted, because the sugar has been the only thing getting though my digestion.

Has Elizabeth influenced you decision to go gluten-free?

Dear Sam-

Maybe I am missing something in your letter, but it sounds to me as if you are just trying this "gluten free diet' as a weight loss fad diet for you. The majority of folks here are on the gluten free diet because they have a genetic disease that requires they follow the diet. The gluten free diet is the only "cure" to getting rid of our symptoms. Please forgive me if I am missing something in your post about a diagnosis.

Elizabeth has not influenced me to "go gluten free". My test results influenced me, the pain I had, and the "wanting to get my life back", influenced me to go gluten free. I am glad that she is bringing some awareness to our disease, but I am not gluten free because of her.

-Jessica :rolleyes:

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Fiddle-Faddle Community Regular
Dear Sam-

Maybe I am missing something in your letter, but it sounds to me as if you are just trying this "gluten free diet' as a weight loss fad diet for you. The majority of folks here are on the gluten free diet because they have a genetic disease that requires they follow the diet. The gluten free diet is the only "cure" to getting rid of our symptoms. Please forgive me if I am missing something in your post about a diagnosis.

Elizabeth has not influenced me to "go gluten free". My test results influenced me, the pain I had, and the "wanting to get my life back", influenced me to go gluten free. I am glad that she is bringing some awareness to our disease, but I am not gluten free because of her.

-Jessica :rolleyes:

Oh, Jessica, you really are missing something!

Sam OBVIOUSLY has medical issues connected to gluten that were missed by his/her doctor (just like the rest of us)-- rash, overweight, and diabetes. Obviously, the gluten-free diet IS the only "cure" to getting rid of Sam's symptoms.

So what if Sam only tried the diet as a weight-loss cure, and only then discovered the relationship to other health problems? How many people here stumbled on the gluten-free diet after noticing that the low-carb diet made them feel better? Worse, how many people here noticed that they felt better on the low-carb diet, but never put it all together until they were diagnosed by blood work and/or biopsy?

Sam's doctor was not smart or savvy enough to order a gluten panel. Sam was inspired to try the gluten-free diet because of Elizabeth Hasselbeck.

Shame on you for missing that Sam, too, has "a genetic disease that requires that he (or she) follow a gluten-free diet.". Sam just found out a different way than you did. In my eyes, your missing it is worse than Sam's doctor missing it. You should know better.

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Michi8 Contributor

Welcome Sam!

I'm so glad you were able to find that a gluten free diet is helpful for you. It really is a shame that your doctor didn't recognize the connection between diabetes & celiac...but its good to hear that the doctor is recognizing how this change in your eating habits is helping. Does your doctor want to do any further testing for diagnosis, or is s/he willing to accept diagnosis based on diet?

Michelle

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angel-jd1 Community Regular
Oh, Jessica, you really are missing something!

Sam OBVIOUSLY has medical issues connected to gluten that were missed by his/her doctor (just like the rest of us)-- rash, overweight, and diabetes. Obviously, the gluten-free diet IS the only "cure" to getting rid of Sam's symptoms.

So what if Sam only tried the diet as a weight-loss cure, and only then discovered the relationship to other health problems? How many people here stumbled on the gluten-free diet after noticing that the low-carb diet made them feel better? Worse, how many people here noticed that they felt better on the low-carb diet, but never put it all together until they were diagnosed by blood work and/or biopsy?

Sam's doctor was not smart or savvy enough to order a gluten panel. Sam was inspired to try the gluten-free diet because of Elizabeth Hasselbeck.

Shame on you for missing that Sam, too, has "a genetic disease that requires that he (or she) follow a gluten-free diet.". Sam just found out a different way than you did. In my eyes, your missing it is worse than Sam's doctor missing it. You should know better.

Dear Fiddle-Faddle...thanks so much for the public flogging. I do SO appreciate it. :blink: As I previously said to Sam....I appologize if I am missing something, but the way I am reading his/her letter is that they are on the diet as a fad. People here are not on the diet by "CHOICE" they are here because it is our way to avoid cancer, infertility, etc etc etc.....Didn't write my opinion to get your panties in a wad dear fiddle faddle. My appologies :rolleyes:

-Jessica :rolleyes:

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Fiddle-Faddle Community Regular

Jessica, I am sincerely sorry that I upset you.

However, I firmly believe that what you wrote to Sam was not only grossly unfair, but it may very well have scared off any other reader who was inspired by Elizabeth Hasselbeck to try the gluten-free diet. What if your criticism of Sam for starting the diet for "less" than medical reasons results in someone--perhaps even Sam--not further investigating gluten intolerance?

I stand by what I originally wrote. I don't believe ANYBODY has the right to judge the reasons for a person's finding out that they are gluten-intolerant.

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Ann1231 Enthusiast
Thank You Elizabeth for bringing this topic out of the closet.

After my last visit to my doctor for my 3 month diabetes check-up, I returned home more frustrated than ever. After three years of changing and refining my eating to reflect the most "healthy diet" I could follow, I stll didn't lose weight and the doctor was recommending more medication.

I prayed that morning for help, because I no longer knew what to do and the additional medication was making my face rashy.

I turned on "the view" to find you talking about Celiac disease and decided to try going gluten-free. It wasn't hard, as I was getting tired of all that wholesome whole-grain bread that was suppose to be making me "healthy".

I made a list of the foods I liked, that were not wheat, barley, etc as well as the ones you listed and began looking for recipes I could cook. Within 6 weeks I have lost 15-20lbs, dropped my sugar levels so much, that my doctor has recommended cutting medication, below what it was before the rashy face; and I have a new lease on life. I can't believe the energy levels. I guess because I have had to deal with this for so long, I just got used to being tired and thought it was normal or because I was old. Except for the wheat, I was already eating well: 2-3 fruits, 4-5 Vegetables, proteins and good fats, I just had to figure what kind of complex carbs I could eat. I found they mostly come down to Root vegetables, Squashes, Corn, Beans and Rice. This is of course before I learned about all those other flours, mixes and desserts available. I now understand why I was so drawn to asian and mexican cooking. So, I've begun to look up some of those old recipes.

I thought I would crave the bread so I started my day with a high protein breakfast over the next few days and found that I not only lost my cravings for wheat I lost my cravings for sugar. I also found my natural hunger levels and found myself putting the fork down sooner. Hurray! I can't remember doing that ever. I have compusively dieted since I was a teenager only getting bigger each time. This is the first time in my life that I'm not afraid of food. I don't know if there is any proof for my theory, but I actually think the diabetes may have resulted, because the sugar has been the only thing getting though my digestion.

Has Elizabeth influenced you decision to go gluten-free?

Elizabeth has no influence on anything I do! I guess I don't understand your post either. Do you think you have celiac or are you using this simply for energy and weight loss? Even people without celiac find they have more energy without wheat (low carb anyone?). If you suspect celiac, you should discuss this with your doctor.

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Fiddle-Faddle Community Regular
If you suspect celiac, you should discuss this with your doctor. If you are using this for weight loss, then this board isn't going to be all you need probably since celiacs have more health issues as well as weight issues.

Since the doctor never even thought of celiac, it's likely that the doctor knows nothing about it, so discussing "suspicions of celiac" would be a waste. Personally, I think Sam needs a different doctor. My endocrinologist told me at my thyroid check-up that she screens all her diabetic patients for celiac now. IMHO, Sam's doctor is not up to par.

As for more health issues--hello, Sam has diabetes, which is very commonly linked with celiac disease. Obviously, Sam already has more health issues as well as weight issues (which, by the way, IS a health issue).

Please, folks, let's not scare off as-yet-undiagnosed celiacs or undiagnosed gluten-intolerant people just when they are discovering all about it!

We have no right to judge how they got here. They have just as much right to be here as any of us, and we should be welcoming, not snotty.

It totally shocks me that you guys would challenge and reject someone who is obviously gluten intolerant just because you don't like how he or she found out about the diet.

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Lisa Mentor

I think it important to be inviting to anyone who inquires here. No mater what the reason , if a gluten free diet can make anyone feel better, I'm all for it.

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Ann1231 Enthusiast
Since the doctor never even thought of celiac, it's likely that the doctor knows nothing about it, so discussing "suspicions of celiac" would be a waste. Personally, I think Sam needs a different doctor. My endocrinologist told me at my thyroid check-up that she screens all her diabetic patients for celiac now. IMHO, Sam's doctor is not up to par.

As for more health issues--hello, Sam has diabetes, which is very commonly linked with celiac disease. Obviously, Sam already has more health issues as well as weight issues (which, by the way, IS a health issue).

Please, folks, let's not scare off as-yet-undiagnosed celiacs or undiagnosed gluten-intolerant people just when they are discovering all about it!

We have no right to judge how they got here. They have just as much right to be here as any of us, and we should be welcoming, not snotty.

It totally shocks me that you guys would challenge and reject someone who is obviously gluten intolerant just because you don't like how he or she found out about the diet.

ff, you are over-reacting to my post just as you did Jessica's. All I said was she should talk to a doctor and that there is more to celiac than weight issues. My Dad died from cancers due to celiac, you don't have to get snippy with me about health issues and celiac. You should calm down and read the posts as they are, not as you seem to be seeing them.

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sunshinen Apprentice
I think it important to be inviting to anyone who inquires here. No mater what the reason , if a gluten free diet can make anyone feel better, I'm all for it.

Absolutely. Especially when it takes doctors an average of 11-13 years to diagnose. We have to take charge of our own health. If it works, it works. And this is a great place for anyone wanting to eat gluten free to share resources, tips, and experiences.

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sunshinen Apprentice
Thank You Elizabeth for bringing this topic out of the closet.

I prayed that morning for help, because I no longer knew what to do ...

...getting tired of all that wholesome whole-grain bread that was suppose to be making me "healthy". ...

I just got used to being tired and thought it was normal or because I was old.

...

not only lost my cravings for wheat I lost my cravings for sugar. I also found my natural hunger levels and found myself putting the fork down sooner.

Welcome to the club Sam! It all sounds very familiar. When I finally found out I had celiac, I had become so desperate for an answer, I was willing to try ANYTHING. Fortunately, when my doctor said he didn't know what else to try, I found a chiropractor who did, some food tests and ...viola.

I wasn't influenced by Elizabeth because I found out before I heard about her "coming out," but I'm glad she's out there helping to spread the word. Three in my family were in very bad shape before we found out the cause. It's so frustrating when what they tell you to eat is actually the problem. Especially when you work so hard to eat "right" and it just makes you worse and worse...

Congratulations on feeling better.

[Edited to add: My father and cousin both died young from what we now think were secondary conditions from undiagnosed celiac, so if you have not, you may want to consider some tests to find out if you have celiac or gluten intolerance as well as urge family members to be tested. It's a genetic disease that is potentially life-threatening, and many family members test positive even when they showed no symptoms.]

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Nantzie Collaborator

Welcome to the board Sam. I'm glad you're here. There is a lot of information in the archives of old messages. You might be surprised that some nagging health problems may start improving as you continue on the gluten-free diet. I found out about celiac because of struggling with IBS for years, but after being on the diet, all sorts of things improved for me, including headaches, fibromyalgia-type pain (to the point I could barely walk), energy, memory and concentration problems, hair loss, etc.

Some people stumble across celiac after trying a diet that takes out carbs or wheat products. For me it was the Six Week Body Makeover (no wheat or any other flour products), which was the only diet I ever tried that worked for me. When I went off of it (there was a death in the family and I no longer cared if I was overweight or not...) my health problems got worse, but I never connected it to my diet.

A couple years later I found out about celiac while trying to figure out my health problems. It made sense, partly because I remembered how good I had felt on the Six Week Body Makeover. I thought I was just feeling better because I had lost weight.

If I hadn't found out about celiac a couple years ago and the health ramifications of gluten that some people experience, then I probably would have stumbled across it just like you did.

One of the most exciting and unexpected benefits I had from the gluten-free diet was losing 30 pounds. Losing that weight impacted my life almost as much as the rest of it. Not only do I feel great healthwise, but I feel great image-wise.

Life is good.

:D

Nancy

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Mtndog Collaborator
I think it important to be inviting to anyone who inquires here. No mater what the reason , if a gluten free diet can make anyone feel better, I'm all for it.

I agree! Welcome Sam- there is a lot if great info on the gluten free diet here. And the fact that you have diabetes is KEY. I'm sure you know that it is auto-immune and having one auto-immune disorder predisposes you to others. I'm glad it has helped you to feel better.

I had been gluten-free for 2 years before Elizabeth Hasslebeck "came out" (the term cracks me up- why would you be a "closet" celiac :P ) but am glad that news of the health benefits of the gluten-free diet are becoming mainstream as I think many people will find out that they are gluten intolerant.

My husband is not celiac but he eats mostly gluten-free ( I cook!) and when he does eat gluten, he complains of feeling overly full and bloated and sleepy.

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loraleena Contributor

It sounds to me like trying the gluten free diet showed Sam that she did have gluten intolerance. Look at how her symptoms are disapearing and how much better she feels. Welcome and please ask lots of questions.

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Lisa Mentor
It sounds to me like trying the gluten free diet showed Sam that she did have gluten intolerance. Look at how her symptoms are disapearing and how much better she feels. Welcome and please ask lots of questions.[/uoto

She or he, welcome Sam.

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MySuicidalTurtle Enthusiast

I believe that being gluten-free can be a lifestyle choice. I support those who do not have Celiac Disease and go gluten-free whether for their health or for their friends/loved ones who has Celiacs. Good for you for finding the source of your problems, Sam! Good luck and do feel free to come here for recipes and other discussions, Sam Caine1!

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Rachel--24 Collaborator
I believe that being gluten-free can be a lifestyle choice. I support those who do not have Celiac Disease and go gluten-free whether for their health or for their friends/loved ones who has Celiacs.

I agree. I dont have Celiac but have been gluten-free for 2 years now. I'm gluten intolerant (hopefully temporarily) due to other health problems.

It matters not how or why we came to be on this diet. I dont think the gluten-free diet is limited to only those who are sick, disabled, or diagnosed Celiac. It can be a lifestyle choice and I dont see anything wrong in that.

I did get the impression that Sam had health problems which led him/her to try the gluten-free diet.

I hope that anyone who is seeking advice, support or answers (regardless the reason for going gluten-free) finds this board to be a great resource. :)

Welcome to the board Sam. :)

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DingoGirl Enthusiast

Very well said, Rachel. I have come to believe that many, many people, who are not Celiac, could dramatically benefit from a gluten-free diet. While I, like many of us, am not thrilled by erroneous reports on celiac disease, I think a sizeable portion of the population could see incredible results by eliminating the POISON.

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NoGluGirl Contributor

Dear Sam,

I am so happy for you that the article helped you! However, I would like to point out some things they forgot to mention. You need new cookware, because gluten hides in cracks and scratches, even after being run in the dishwasher! :o You will also need new cooking utensils. Plus, cross-contamination is a concern. Many foods are not made in a dedicated facility or on dedicated lines, making them possible sources of gluten. Lay's (except for the Stax), Quaker, Bob's Red Mill, and Amy's Kitchen all have had reports of making people on the forum ill. I wanted to let you know, so you could avoid them.

Many of us also must avoid dairy. We are sensitive to casein, a protein in milk. Others do not tolerate lactose. If some of your problems are not gone, you may want to try and eliminate dairy. I have a severe reaction from a microscopic amount of gluten, so I have to be extremely careful. I had typical conditions of a Celiac's history. I have had Thyroid disease, hypoglycemia, severe Acid Reflux, IBS, and my gallbladder had to come out at 20! These are all typical with Celiac, as is anemia, which I also have dealt with. When I was a baby, I spit up every formula my parents put me on! The finally had to put me on 2% milk at 3 weeks old. I have other health issues aside from this, such as a systemic overgrowth of yeast, and possibly Lyme, Babesia (a Lyme co-infection) and vitamin deficiencies. The reflux used to be so bad I had to sleep sitting practically straight up until I went gluten-free last August. I do not get tempted to cheat, due to my violent reaction. If I am glutened, I break out in a sweat, become unbearably nauseated, have the intense need to have a bowel movement, start shaking, sometimes my hands go numb, and if I do not hurry up and swallow my anti-nausea medication, get dry heaves to the point I feel my insides are emploding. I am grateful I found out now, at 24 instead of later. The longer it takes for diagnosis, the more damage is done, which may not always be able to be reversed. We are so glad you joined us here! Welcome and feel free to ask any questions! Also, I have a present for you below!

I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

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Mtndog Collaborator

NoGluGirl- NICE!!!!!!!!!!!! Now THAT is a welcome!!!!!!!!!!!!!!

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dally099 Contributor

hi, i just watched the clip online of her segmant on the veiw, i think she probably got sick after doing survivor, i think that any awareness for any health issues on day time tv is great, for some people this is what gives them the light bulb on certain issues, i know for us it was a tv special on autism 3 years ago that gave us a heads up on our son. i dont think anyone would do a gluten free "diet" as a fad diet for weight loss, elizabeth made a great point that some people accually gain weight when they realize all the food that they can eat!

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Judyin Philly Enthusiast

NoGluGirl--

dito great welcome.

I hope you will approve that I did a copy of the great list you prepared.

I would like to post it on Daily Strength (with your name as creator of course) b/c some newbie just asked for a list.

Thanks for all your contributions to c.com.

I read all your posts but just don't respond much on line .

keep up the great work.

Welcome Sam.

Judy

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Nantzie Collaborator
Dear Nantzie,

I am so glad you mentioned the Six Week Body Makeover! I want to do that so badly! I do not have the money! Michael Thurmond makes sense in what he is doing. Diets are not one size fits all. It varies on the body. Certain foods help certain body types lose weight faster. I wish I could afford it! :(

Sincerely,

NoGluGirl

6wbmo is great. You can join the message boards there without buying it. It's a great group of people, kind of like here. :)Open Original Shared Link They have a rule that they can't discuss the specifics but you can get a vague idea of it by doing the body type analysis and then seeing what the people with your body type are eating for different meals. The basic food restrictions are no sugar, salt, wheat, dairy or oil. Then it's eating certain quantities of certain types of food at certain times of day. For example, I remember breakfast was 2 oz protein and 4 oz of fruit. Mid-morning snack was the same I think. Lunch was 2 oz protein, 2 oz allowed carb (rice or potato). Unlimited veggies at all meals. It doesn't sound like much food, but with six meals a day, you're eating every 3 hours or so, which gets to be too much after just a few days. It got to the point where I wasn't even eating the evening snack because I wasn't hungry.

When you order it they will do payments of 19.99 a month, which is how I was able to do it.

I checked ebay - they've got a bunch too. Open Original Shared Link

Nancy

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NoGluGirl Contributor

Dear Mtndog and JudyinPhilly,

Thank you for the compliments! Judy, you can copy my list anytime you like! It is all about making things as easy as possible for everyone! ;) We cannot spend our entire life in the grocery store or the kitchen! Lord knows, I spend half the day cooking and cleaning. I do not have a lot of cookware, and live with two non-gluten free people. So, it complicates things! This can be an overwhelming disease, but if I can make this easier for anyone, feel free to send the list to anyone you think needs it! :)

Dear Nantzie,

Thank you for the info! I was defrauded recently by an Internet company, and lost everything to them. If I am able to get my money back, I will spend some of it on the Six Week Body Makeover! I knew they had payments. It is just not affordable at the moment. I did get to do my body analysis online before. This plan would work for me, because I have to watch my fat due to gallbladder removal, and I have been trying to cut out the sugar anyway! I am Type C.

Sincerely,

NoGluGirl

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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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