Lynayah

Thanks. I would like to learn more. Might you have a resource or two (or more) to share? I am confused about how eating very small amounts can keep my gliadin level as has as it was previously. I really appreciate your help!

You have a great outlook!

Weighing is a great tool and I prefer it over measuring completely-just more accurate. And it does give you a good sense of portion, so when the day comes that you are at a weight you would like to maintain, it will be easier to "eyeball" if you like. But while you are actively losing, weighing and a food journal is the way to go!

Oh-I almost forgot the original question was tips for "easy" weight loss-unfortunately I think the honest answer is that losing fat is never easy. Being hungry is a part of it-you are intentionally feeding your body less than it requires to stay the same. I think recognizing hunger is OK-and realizing that if you stick to your plan and lose the fat, that someday the dieting will be over, you will have met your goal, and then you can eat at maintenance and you won't be hungry any more. But I think you already realize that

Thank you for your excellent post.

Here's the thing: Right now, the hunger for me is higher than I have known in many, many years.

Here is an interesting note: I just had my Gliadin re-tested, and I am higher now than when I finished the gluten challenge, despite my being gluten-free. I have a post about it here and would welcome comments from those who have been there: https://www.celiac.com/gluten-free/index.php?showtopic=64449

I cannot help but wonder if the continued high Gliadin is part of my problem. My body continues to manufacture Gliadin because it does not yet understand that is it safe from gluten. In the meantime, the gluten reaction is causing me to crave food because my body does not yet read that I'm on the other side of things, and it thinks I need more food (nutrients) than I really do.

I had my blood sugar tested a few months back, and it is fine.

I am absorbing nutrients now, too, thank goodness. I had good bloodwork results that showed everything is well. Hence my thinking that the high Glidadin may be the issue.

Today was particularly challenging. I've been eating whole foods only, and around noon today, I became so incredibly hungry that I wanted to kill for anything and everything I could get my hands on. This after having had a high-nutrition breakfast (400 calories with a good balance of protein, vegetables and fruit) and a high-nutrition mid-morning snack (an apple and almond milk), yet I bottomed-out with no willpower whatsoever. WHAT THE HECK IS GOING ON!

Has anyone out there ever been on steroids? Do you know what the uncontrollable hunger feels like when on steroids? It is very challenging.

Well, this is like steroids times ten. It is very, very, VERY hard to keep from eating like crazy, even for someone like me who understands nutrition and understands how to take weight off and keep it off.

I KNOW WHAT I AM DOING. I KNOW MY BODY. Sadly, common sense and doing the right thing is working against me right now. Crazy things are happening with my body, and I am having a very tough time wrapping my head around it.

Still, I'm sticking to eating right and working out. I'm NOT GIVING UP, despite my wanting to eat my house.

Damn, this is so hard.

Don't forget about those bisquick, sausage and cheese hors d' oeuvres -----In Louisiana they are called "Coon Balls"

Someone needs to come up with a gluten-free version of those

Ingredients:

We can laugh all we want.

But, if you put Velveeta Dips (keep them hot) out a party, especially a football party, It is always the first to go. Highbrow Types always ask "what is your recipe"?

Yes!

AND if you tell them that your "secret recipe" is made from some incredibly expensive, exclusive cheese, then they start to salivate . . . and if, after that, you just keep your mouth shut just long enough, they throw money at you for the recipe.

Catch it and run for the goal line!

As I've always said, if peanut butter cost $100 an ounce, everyone would know it is the greatest food in the world.

What is funny is that the same folks that turn their nose up at SPAM, eat canned soups, chili, tuna, prepared frozen and box meals, all full of chemicals, preservatives and mystery ingredients. Not to mention Fast Food....

I say always keep a Can o' Spam in the cabinet for emergency's along with a big block of Velveeta Cheese (America's favorite processed cheese "food"). The Pair makes a helluva Party Platter for those impromptu guests during the holidays. Always keep those little toothpicks with the curly plastic cellophane to decorate it up!

FYI Spam is available in a low sodium version....

"Canned soups, chili, tuna" . . . well said!

"little toothpicks with the curly plastic cellophane" . . . of course, dahlink! What else would even come close to making the perfect snack statement?

Oh my gosh, in addition to Spam, Velveeta is gluten free, too? ALL VARIATIES? (Oh please tell me yes!) Talk about processed-food-heaven!

Hold onto my hips, here I come. Whooo-hooo!

The next time I need a guilty pleasure, I sure know where I'm going.

PS: May I please have some fries with that?

see next post -- posted the same post twice in error.

PS: Any Monty Python fans out there? "SPAM, lovely Spam, wonderful Spam!"

Gosh, I don't mind eating gluten-free food but I sure do mind paying for it! Yikes!!

There is a health food store near me and I've gotten a few things there like crackers, cereal, soups, pasta, etc. and everything is so much more expensive than "regular" food.

And today I went to Meijer's to check out their gluten free stuff and they did have a lot so I got a few more things. One thing in particular, Ian's frozen Chicken Nuggets. Wow. $6.19 for TEN nuggets!! TWO servings is all that's in the box, for $6.19!!! That's terrible!! I won't be buying them again. I did check the price before I bought them, and sucked in my breath when I saw it. But I guess I just expected there would be more nuggets than what there were.

They're okay. I baked them in the oven, but should have left them in a bit longer. Deep fried would be better.

Celery and carrot sticks are a lot cheaper!!

I feel your pain! My husband has been out of work for many months, with just my income to support us, including education costs and other family support issues. Oh my gosh yes, it is hurtfully expensive, especially if you want to purchase products that are not whole foods.

I agree: whole foods are the best bet: seasonal fruits and vegetables, meat on sale, etc.

That said, here is a suggestion: I belong to a local GIG (gluten intolerance group). The leader contacts companies to find out the best price for bulk orders, and then we order together as a group. This can save many, MANY dollars and is a blessing.

GIG: Open Original Shared Link

If there isn't a chapter in your area, maybe you could start one? Everything happens for a reason, as they say.

Hope this helps a little. Keep posting here! I want to hear more about how you work things out! I am trying so hard to keep to a responsible food budget. It is definitely not easy.

These are classic--easy to work with dough that you can cut and decorate. I like to do stars, frost with vanilla frosting, and sprinkle with sugar in the raw. Sparkly and festive!

SUGAR COOKIES

1 cup shortening

1 cup sugar

2 eggs

1/2 teaspoon vanilla

3 cups rice flour blend (I simply use 2 cups of rice flour and one cup of potato starch--I'm intolerant to tapioca)

1 1/2 teaspoon xanthan gum

2 teaspoons baking powder

1/2 teaspoon baking soda

1/2 teaspoon salt

1/4 cup milk if needed

Cream shortening and sugar, add eggs and vanilla. When combined, add dry ingredients. Wrap dough (I also flatten it a little) and chill for about an hour. Roll out and cut as desired.

Bake at 350 for 8-10 minutes. Cool, frost and decorate.

This sounds so good! My oldest daughter is coming home for the holidays, and she requested decorated cookies. This would be perfect for her as well -- much appreciated. I have it added to my grocery list and am excited to try it!

I can eat butter. Can I substitute butter for shortening without a problem?

Does it have to be cookies? I just recently succeeded with a pumpkin roll that was awesome..... If you'd like to try it, let me know I'll post the recipe...

Wenmin

I would LOVE the recipe -- please post it! I think someone is already bringing pumpkin roll to the party, but I WANT THE RECIPE so very much for using over the holidays for my family -- thank you!

Pumpkin roll always seemed to hard to me. I would really love to try to see if I can do it.

Hi

Is there any cookie recipe that you are looking for? Like peanut butter kissy cookies, or I guess I mean any certain flavor? My husband, Jeff has celiac and I have been cooking/baking for him since he was diagnosed over 3 years ago. If you could tell me what kind you are looking for I might be able to help.

Thanks

Sue

I'm not really sure -- I'm more interested in recipes that get a lot of "wows!" regardless of the flavor.

Good ol' Tollhouse, and I used Tom Sawyers blend, but I think anything that you have on hand might work. I made it according to the recipe, and just changed out the flour and used crisco bars instead of butter (I'm dairy intolerant). They are AWESOME. I'm told if you cut the rice/tapioca flour with sweet sorghum flour it cuts back on the gritty finish, but honestly - I like them just the way they are. Everyone that has tried them thought they tasted like normal cookies, and I make awesome chocolate chip cookies...and these are every bit as good.

Great tip! Thank you.

Hi, Everyone:

Next week, I will meet with my GIG (Gluten-Intolerance Group), and we will have a holiday cookie exchange. This group has been incredibly helpful to me -- they are the best, and I want to thank them by bringing a WONDERFUL batch of holiday cookies, along with the recipe.

Right now, I have Better Batter and Pamela's Pancake and Baking Mix in the house, although if I have to go out and buy different stuff, that's okay. I just want to bake something super-fantastic for the most wonderful group of people in the world.

Any help appreciated. Thank you, thank you, thank you . . . and HAPPY HOLIDAYS!

Food . . . don't you love it? Whoever invented it sure knew what they were doing! LOL!

I just received the results to my second Gliadin test, and I'm higher now that I was when after doing the gluten challenge! Oh, good grief.

My vitamin levels came back fine. Whooo-hooo! VERY happy about this.

For those who may have an interest, I've posted a thread asking about higher Gliadin levels here:

https://www.celiac.com/gluten-free/index.php?showtopic=64449

In the meantime, I wanted to post the update here, too. I am now also scheduled for blood work to check complete blood count, my kidney function, and my thyroid. I'll keep this thread updated when I get the results.

Colonoscopy still scheduled for January. Oh, fun, fun, fun! By the way, I don't think I mentioned this earlier, but in addition to the doctor questioning the lower GI thing, I also found small red streaks of blood in my stool (sorry to be blunt, but it was on the tissue as I wiped). It happened three times. I am not too worried, but I am glad that U of C is checking me again.

I continue to be very happy with the University of Chicago Celiac Center and would recommend it to anyone.

Thank you to all who have been viewing this thread -- I looked at the count today, and it blew me away! There are a lot of you out there. I pray the information is helpful to some of you, and I deeply appreciate knowing you are there.

Best wishes to all,

Lyn

Hi, Everyone:

I just got the results to my second round of blood work (first round taken in September). My Gliadin is higher now (88) than it was immediately after my gluten challenge (86).

Any thoughts?

I have been gluten free since September and feeling better by the minute -- really GREAT results so far, thank goodness.

I've made mistakes, but according to my doctor's nurse, they are small ones: While on vacation in October, a cookie that I thought was gluten free but was not . . . needed to change toothpaste early on . . . put hand in mouth after putting on hand lotion that had wheat germ oil in it . . . used a tiny bit of spice that "might" not have been gluten-free, things like that -- according to the nurse (who is the one who called me with the results), this is nothing that would cause my Gliadin to soar HIGHER than when I was eating gluten every day.

I'll see the doctor in January and can discuss it more at that time. In the meantime, I sure would appreciate everyone's thoughts and/or similar experiences.

I remember reading somewhere that it can take many months for Gliadin to go down -- I read that once someone's body starts to produce Gliadin, it will continue to manufacture it even after the person stops eating gluten. I don't really know more about it than that.

Is this true? Is there anyone out there who experienced the same thing?

I would love to hear from you. Thank you!

I am embarassed to admit, but I kinda like it too, although I don't eat it due to sodium and weight issues . . . but wow, for others, what an easy thing to pack for travel or pick up while on the road. As memory serves, a lot of gas stations carry Spam in the grocery section . . . or at least they used to carry it. This will probably help a lot of folks cope.

Check out my signature, below. All symptoms improved - except for white cell count which I have not had checked.

Also, years back, I suffered from almost a full year's worth of chronic fatigue with swollen glands every day and a strep-like sore throat every morning and night. I don't know if gluten-sensitivity had anything to do with it, but since you mentioned the swollen glands, I thought I'd mention it, too.

I was diagnosed with celiac in October and was doing well with the gluten free diet until I went to celebrate Thanksgiving with family, we had to drive for two days, eat on the road, eat a week and a half of meals away from home, and I am not sure how many times I got gluten while on traveling but it was at least once or twice. I then came home and accidentally got gluten from one of my pans I should have tossed but missed when I cleaned out my pantry. I seem to be very sensitive to gluten now, I think I've reacted to food with cross contamination a couple of times and am getting frustrated, as I feel that I am trying really hard to keep gluten out of my diet yet I keep getting it from somewhere.

Is there anything I can do to help me feel better when I get gluten?

Also, do you have any tips for being away from home and eating gluten free, I have to travel again at Christmas and am dreading it. I already sent back some gluten free snacks and bread for myself, but am scared about eating out and eating with people who don't normally cook gluten free. Everyone has been very nice about trying to accommodate me, but I am still very nervous after my experiences at Thanksgiving.

When I get glutened, the only thing that seems to help is to drink more water and take a bath in Epsom salt. Still, it doesn't take it away. Only time does that, unfortunately.

As for your having a difficult time not cheating, I am going to post here something that I posted in another thread earlier:

Depravation isn't cool. It might help to try new recipes or purchase some gluten-free items that help you feel like you're part of the group . . . and have them ready for the next time you might want to cave in and eat what the family is eating.

What are your biggest weaknesses and what can you purchase / travel with / or make that will give you similar satisfaction to the foods that tempt you to cheat?

Two things that are helping me a lot right now:

1- Letting people know that they shouldn't feel bad if I bring my own food to a get-together at their house. When I explain to them that I am so sensitive that I even have to have a dedicated can opener, their eyes pop open and they begin to understand. I ask them to PLEASE not try to do anything for me, and I explain that the risk of cross contamination is just too great . . . however, if they'd like to pour me a glass of wine, fine! I let them know that what really matters is being with them. Then I bring whatever I want and enjoy the heck out of it.

2- Talking restaurants that are not certified gluten-free into letting me bring my own food. I nicely let them know that they will have a table full of people if I can bring my own food . . . if not, we'll have to go elsewhere.

So far, I have had only one restaurant say no to me.

It helps to fit the food to the restaurant. If we go out for Mexican, I bring my own Mexican.

As odd as it sounds: There is something very liberating about going with the gluten-free flow and not trying to fit in by eating like everyone else. It takes some pre-planning, but it is worth it.

Two things happen: First, you can relax knowing that you can eat what you want without having to worry about getting sick. Second, those around you will take your gluten-intolorance more seriously and respect your needs.

Right now, I'm eating mostly whole foods only . . . however, I'm going to a family pizza / holiday cookie party in a couple weeks. I'm going to forget about my diet that night and buy a good gluten-free pizza, make it at home and bring it along. And for dessert? You guessed it, gluten-free cookies. I'll still be part of the group, but while being my own best friend.

If you'd like to view the thread this came from, it is at: https://www.celiac.com/gluten-free/index.php?showtopic=64333

The person who started the thread has similar issues with cheating. You might find it interesting.

I would add that while traveling, remember that a grocery store is often as easy to stop at as a fast food restaurant.

Also, there are some chains that offer gluten-free menus. It helps to learn them. Outback Steakhouse is one of them.

Hope this helps.

You have already been given some great feedback, and it sounds like you are on the right track. You are absolutely right to take one day, one issue at a time, and also me gentle with yourself and be patient. Fat loss is a process.

I agree with Lyn 100%-I think we tend to eat more sweets/processed stuff that's labeled "gluten free" because we know it will be safe. I just touched on this in an article I wrote. Meanwhile, safe doesn't necessarily correlate to low calorie or healthful. As celiacs the keys to weight loss are no different than any other person, we just have to be aware of a few more factors. Moving more, whether in formal exercise or just activity, in combination with smart nutrition will work.

Best wishes and good luck with Weight Watchers!

Erin, where is your article? I'd love to read it.

Sounds like you are on the right track!

Exercise and general activity are key, as you know.

I am curious though-how do you know you are getting 1500 calories? Are you weighing everything you eat? I ask because it is very common for measuring (with cups and spoons) to be inaccurate, and you may be getting several hundred calories more than you think inadvertently. That could certainly slow your progress.

Keep up the great attitude!

Thank you!

Yes, weigh and measure, that's the only true way to tell. Even low carb vegetables add up after a while.

What I find interesting is that, a lot of times, I actually get MORE food than I thought I would get. Without weighing, it is almost as easy to underestimate as it is to overestimate!

I just love it when I get more food.

Keeping a journal is important too, although I really hate doing it.

That said, once my body readjusts, I will be able to listen to my body and know when to eat as well as when to stop -- however, for me, this is true only on days when I eat clean foods. I used to be able to have a few slices of whole wheat bread back in the day, but I suspect that I'll be able to stop measuring and weighing ONLY when I eat strictly low-carb vegetables, fresh fruit and legumes in a day.

But I'm not there yet. I need to give myself time for my body to establish an honest whole-food balance.

Prior to my diagnosis, I thought I was going crazy from how feeble-minded I had become. I couldn't figure anything out on my own . . . and if someone asked me where something was in the house, I couldn't find the words to answer them. The only way I could help them was to get up and show them where to look.

Typos increased, as did using the wrong words -- much like a stroke victim. I would struggle to find the word I wanted to say -- I KNEW the word and it drove me nuts how I couldn't call it up in my mind. OR, I'd mean to say "fork," but I'd say "cup," yet I would swear I had spoken the right word.

The thing that drove me the craziest was when my computer literacy started to go away. I had to ask my husband the simplest things like, "How do I cancel a print job on my printer?"

Now, if I had never known how to do it that would be one thing, but I've cancelled gazillions of print jobs without a problem."

There were days that I felt as though I was asking him for help every five minutes. "I can't get my iPod to play" . . . "I can't remember how I used to cook steak rare without over broiling it" . . . I REALLY THOUGHT I WAS LOSING IT.

It's better now! I can think again!

You'll be okay.

A quick question: Have you had a loss of coordination, too? That happened to me as well. I also lost use of my feet and could barely walk. Looking back, I think that gluten was affecting my brain and body neurologically (Google gluten-ataxia for more info about the brain thing).

I have never been tested for ataxia. Since I'm eating gluten-free no matter what, I am not sure it matters at this point.

I'm happy to say that I've gotten MUCH better. Every day, I feel more and more like my old self.

Thank you to both of you. As scary as it is to give up on the eating/socail live style that I have had for 35 years, I am going to be a LOT better at sticking with it now. The out come of it possibly not reversing itself after time is a LOT scarier. Thanks again.

Wish me luck! :-)

Again.....I am glad to know I am not the only one out there.

Depravation isn't cool. It might help to try new recipes or purchase some gluten-free items that help you feel like you're part of the group . . . and have them ready for the next time you might want to cave in and eat what the family is eating.

What are your biggest weaknesses and what can you purchase / make that will give you similar satisfaction?

Two things that are helping me a lot right now:

1- Letting people know that they shouldn't feel bad if I bring my own food to a get-together at their house. When I explain to them that I am so sensitive that I even have to have a dedicated can opener, their eyes pop open and they begin to understand. I ask them to PLEASE not try to do anything for me, and I explain that the risk of cross contamination is just too great . . . however, if they'd like to pour me a glass of wine, fine! I let them know that what really matters is being with them. Then I bring whatever I want and enjoy the heck out of it.

2- Talking restaurants that are not certified gluten-free into letting me bring my own food. I nicely let them know that they will have a table full of people if I can bring my own food . . . if not, we'll have to go elsewhere.

So far, I have had only one restaurant say no to me.

It helps to fit the food to the restaurant. If we go out for Mexican, I bring my own Mexican.

As odd as it sounds: There is something very liberating about going with the gluten-free flow and not trying to fit in by eating like everyone else. It takes some pre-planning, but it is worth it.

Two things happen: First, you can relax knowing that you can eat what you want without having to worry about getting sick. Second, those around you will take your gluten-intolorance more seriously and respect your needs.

Right now, I'm eating mostly whole foods only . . . however, I'm going to a family pizza / holiday cookie party in a couple weeks. I'm going to forget about my diet that night and buy a good gluten-free pizza, make it at home and bring it along. And for dessert? You guessed it, gluten-free cookies. I'll still be part of the group, but while being my own best friend.

Okay, my rah-rah session aside: Have your symptoms started to improve yet? Just a little? Hope so.

Thanks for the heads up on the book Lynayah and info on gluten intolerance. From what you say, it may be there just isn't that much discernable difference between severe cases of gluten intolerance and celiac. I want to read that book... I think doctors need to expand their definitions since eating gluten seems to be hard on a lot more people than just those with celiac. Sounds like testing now for celiac etc. is a hit or miss thing with the current technology as well as theories as to what is actually causing it as well as its effects.

Bea

Agreed!

For me, I assume I may have an undetected auto-immune disorder of one sort or another and eat very carefully. I worry about those who have been diagnosed with non-celiac gluten-intolerance because they might have genes that cause other parts of their body to break down OR they may have been misdiagnosed.

Sadly, some with low-sensitivity gluten-intolerance allow themselves to cheat occasionally thinking that they aren't really doing any damage to their body.

Perhaps they aren't, and I hope that is the case . . . but something in my gut (pun intended) tells me that those with non-celiac gluten-intolerance need to be as careful as those with Celiac.

Time will tell. For now, I am not taking any chances.

CGally81: I guess what all of this is saying is that, right now, you should work really hard at finding books, threads, or whatever documentation you might need to make sure that your family and friends take you seriously. Celiac is, as they say, only "the tip of the iceburg" when it comes to gluten-intolorance disorders.

Just because you might not have Celiac doesn't mean anyone should assume you are not very sick, and it most certainly doesn't mean others shouldn't respect your need to eat gluten free.

Also, if meds for Celiac someday happen (and I predict they will because it is most certainly driving drug companies CRAZY that they can't make any money on us right now), I predict it will aid those with gluten-intolorance, gluten-ataxia, Celiac and whatever else might be out there.

Whether or not the prescription will be safe and worth taking will be another matter, but in the meantime, good for you for hanging on to your hopes. Hope is a good thing.

These are all such great tips . . . and I've been inspired to exercise more.

Right now, I'm going to concentrate less on animal protein and more on fruits, vegetables, legumes as the main part of my diet, with limited animal meats. That way, I can pack as much nutrition and foods-that-fill-me-up into each meal as possible.

I'll also stay with one cup a day of the Specific Carbohydrate Diet 24-hour yogurt (which I can eat even though I try not to eat/drink other dairy). It seems to be helping me heal.

Calories: 1,500 a day.

You get A LOT of fruit, vegetables and beans for that amount. A whole food approach, with a lot of clean food has always worked best for me -- that is how I lost all the weight so many years ago. Except then, I used to enjoy Natural Ovens Bread, Wasa Crackers or corn tortillas every day. They really helped me get through the day. Other than that, I cut other refined foods to almost zero.

I am re-reading a wonderful book, EAT TO LIVE by Dr. Joel Fuhrman. Wheat aside, the techniques in this book worked for me in the 90's (of course, I was doing this long before the book was published - eating whole foods for a healthy weight is nothing new -- it is as old as man). Anyway, if it worked for me then, I believe it will work for me now.

The only difference will be that this time I will have to do it gluten-free, which is actually a blessing since processed foods slow me down anyway! Maybe I'll find a good gluten free corn tortilla somewhere -- a little guilty pleasure can be nice once in a while. I've tried to make them on my own and made a laughable mess of it all!

EAT TO LIVE promotes no wheat (or, for those who can eat it, wheat in moderation), so it is a good fit for me.

Still, even with that (I've been doing this for a few days ), my body still seems stuck right now. When I make a change such as this, I used to always feel the difference as soon as the next day. Maybe no weight loss that soon, but my body would feel so much better that I knew I was headed in the right direction.

You know what I mean? Does your body usually talk to you this way, too?

Now, I feel sluggish and heavy . . . and I am UP a quarter pound since yesterday! Although, truth be told, I had a small bit of dehydrated onion yesterday, and I am not 100% sure it was gluten free -- tummy rumbling and joint pain yesterday, loose stools this morning, so that could be the cause of the weight and sluggishness.

I also need to cut back on wine on the weekend. (Or perhaps that should be cut back on whine!)

AUGHHHHHHH!

I know it will all work out; you have all given me hope.

Next doctor appointment, I will also ask for a thyroid test.

Like most, I want the weight off yesterday. I feel as though all I am doing these days is giving up things. All I want in return is my weight to go in a positive direction. I need so badly to see and feel it happening.

I know, I know . . . I have to remind myself that even if I lose a half to one pound a week, I'll be headed in the right direction. My body is healing, that's what is important.

Heck, even if I am just maintaining, I am eating healthier and giving my body what it needs.

Yes, I really need to put exercise first no matter what. Thank you all for reminding me.

I used to walk four miles a day, and I don't even come close to that now. Frankly, I don't want to. I'm not in the groove. I need to work up to it.

I'm thinking that if I can do at least 15 min. on my exercise bike every day (more if I want -- which usually happens once I've done 15 min.), I will at least get back into the habit of exercising daily . . . that's how I began when I needed to lose over 100 -- one block a day until I slowly increased to more.

Yes, all of you are right on! You've reminded me about the importance of getting back to the basics . . . and the importance of being patient with myself.

After all, every step in the right direction is . . . well . . . a step in the right direction!

Hugs to you all!

Since my symptoms are neurological rather than just gastrointestinal, I don't think it's only "gluten intolerance" instead of Celiac. I'd read about the difference between the two; supposedly, people with the intolerance can handle small amounts of gluten, whereas Celiacs can handle absolutely none. Since I got glutened from amounts of gluten I couldn't see, I'm sure I have Celiac.

The gene testing was only done for HLA DQ2 and DQ8, and neither showed.

From what I understand, it all depends on the individual. Many non-Celiac Gluten Intolorance individuals are extremely sensitive -- many are even more sensitive than those who have Celiac.

This is one reason why some people with Celiac go undiagnosed for years, or forever . . . not all of them have visible symptoms. This is frightening because those poor folks villi are being destroyed, and they don't even know it because they feel fine.

I am one of those highly sensitive individuals with gluten-intolorance. I cannot handle even the smallest amount of gluten without getting a reaction. It has definitely been a challenge, but I feel so much better now, it has been worth it.

The difference, at least as medical science now stands, is that those with Celiac have an auto-immune disorder while those with gluten-intolorance do not.

The symptoms can be the same as Celiac (see the list of symptoms in my signature) . . . but someone without Celiac has no damage to villi . . . IF, of course, they have been diagnosed correctly.

However, those with gluten-intolorance MAY have other DQ genes that were not tested, for example, those for gluten ataxia.

I have not been tested for those genes, although because I have other neurological problems, I may very well have the gene for gluten ataxia.

Right now, since I'm following a strict gluten-free diet regardless, I'm currently opting not to go for further testing. I think it is safer not to have anything on my records for insurance purposes.

To the original poster here: Doctors are taking gluten-intolorance more and more seriously by the day. If you have it, you shouldn't need a diagnosis of Celiac for those around you to understand and support you.

There's a good explaination of tests and gluten-intolorance in a book entitled Healthier Without Wheat, by Stephen Wangen. He has a very healthy respect for gluten-intolorance, and he gets quite annoyed with physicians who look only for Celiac and nothing else.

In my blood work, my gliadin came back very high, which can indicate gluten-intolorance. I also did the gluten challenge before they ran the test.

Anyway, if you read Healthier Without Wheat, you'll see that Wangen feels that those who have high gliadin (but all other tests negative) are, in his opinion, definitely gluten-intolorant and should be respected as such.

So everything went very smoothly (especially the fun sleepy meds!)

I got a report from the doc with photos that said everything looked "normal" through the camera. He did take biopsies, and I have to call for the results next Tuesday.

Haven't gone gluten-free yet. I'm going away on a business trip next week and will be eating out for EVERY meal, so I decided it best to wait until I can go shopping and start off the right way.

I'm trying the diet regardless of the results. It definitely couldn't hurt, and I'm sick of being sick!

Good for you, and best wishes for a great time on your trip.

Enjoy your new eating lifestyle -- you'll feel so much better. Give it time. Let us know the results!