Frustrated And Confused.

[linds]

Hi guys! I am new here and have a few questions. I have not been diagnosed but have a rising suspicion that I have celiac. I have been to many different doctors and 2 GI's they have all told me that I am suffering from IBS and that it couldn't be anything else. I asked about celiac and though I have many of the symptoms they would always tell me that I don't feel bad enough for it to be that. However things have just gotten worse. I cant focus, i am down to weighing just 90 lbs, I am always hungry but never feel as though i have ate. I am to the point of almost avoiding food because it makes me feel so much worse. I have been working with a dietician for the IBS and all I am doing is getting worse. She then suggested that it could be celiac since the more I eat wheat and other grains the worse I am feeling. She is getting me the blood tests through a new doctor, hopefully a more open-minded one. Then se is hoping on getting me on a gluten free diet. I am just wondering if anyone has advice on how to start and how to make this major lifestyle change go more smoothy (i usually only eat breads and pastas) also what are some on the hidden things that have gluten in them that I should look out for? I would appreciate the advice.

Thanks,

Lindsay

[RiceGuy]

Welcome to the forums!

I hope you get all the answers you need, so you can heal your body.

Well, there are a ton of posts which address the questions you have. I'd suggest starting with the site index though, via the link on the left hand side. There you will see links to all the basic stuff, giving you much of what you need to get started on your journey into the gluten-free world

For what to eat, think rice, millet, corn, potatoes...the list is large, but you'll slowly expand your food selections as you become more familiar with not eating wheat. Just try to keep in mind that Americans tend to be very biased towards wheat, and often don't even know that most of the world depends on other grains as a primary staple. Rice has always been the most common staple grain. Sorghum is quite a useful grain, and has been for a long time. It is among the top 5 grains on the planet, yet many Americans don't even know it exists.

The diet change isn't so drastic really. It's more of a change of ingredients. Rice pasta is fantastic, and IMHO is better than wheat pasta! Look for Tinkyada brand, which is the favorite for many. It doesn't even get mushy nearly as fast as wheat pasta from what I've found. I doubt you'd ever know it's not wheat if someone served it to you without telling you. There is another brand I just found out about, so I have yet to try it - it's called Open Original Shared Link. These are expensive compared to the cheapo wheat pastas on the market, but it can help you wrap your mind around the new foods, and make a smoother transition to rice and so forth.

Legumes/beans are very nutritious too, and again often excluded from the typical American diet. Very versatile as well.

Now you need to watch out for new food sensitivities that creep up. So many on this board can relate stories of this. I'm sure you'll get a bunch. Lactose, casein, soy, corn, tree nuts, peanuts, eggs and dairy are common examples.

Don't worry about the diagnosis if the diet works for you. Listen to your body before you listen to the docs. It can take time to see a difference, so don't be discouraged if you don't feel like a million the first week or two. It took me six months to see anything at all. Others see great changes the first few days.

[RiceGuy]

I forgot to mention breads. Of course you don't need wheat to make breads. Though there are certainly specialty food companies offering various gluten-free breads, you may find the price too steep to eat like you may be accustomed to doing with wheat breads. Baking from scratch can save you a lot of money, but you will have to locate the ingredients, not all of which are so cheap as all-purpose wheat flour.

What I might suggest is to take a look at what companies are selling, so you can see what ingredients they use. Also the premixed gluten-free flour blends will generally have the most common ones you'll find suggested in many recipes. Again this site has plenty to offer for recipe ideas too. Both the forums, and the recipes which are linked on the site index page will give you plenty to try out. Have fun with them. Experiment and don't be discouraged if it doesn't turn out the first few times. I'm sure wheat breads took awhile to figure out too initially.

[Guest nini]

if you are going to pursue testing, don't start the gluten-free diet yet, but after testing is done, regardless of the results, go ahead and try the diet, it can't hurt, and it just might help.

IBS is just a catch all dx, It really means they dont' know what is causing your symptoms and many Dr.s are still under the mistaken assumption that Celiac/gluten intolerance is very rare, it is not. Also, positive dietary response is a very valid diagnostic tool according to several Celiac experts that I have had the opportunity to speak with personally.

For help on starting the diet simply click on the link in my signature below for my webpage, at the bottom of my web page is a link for the Newbie Survival Kit, it is a zip file download with tons of useful information... (oh and the Delphi list on their is not the most recent so if you want the most recent you can click on the other link on my web page for individual file downloads and the Delph list on there IS the most current). Good luck and don't hesitate to ask questions.

[eKatherine]

Hi guys! I am new here and have a few questions. I have not been diagnosed but have a rising suspicion that I have celiac. I have been to many different doctors and 2 GI's they have all told me that I am suffering from IBS and that it couldn't be anything else. I asked about celiac and though I have many of the symptoms they would always tell me that I don't feel bad enough for it to be that. However things have just gotten worse. I cant focus, i am down to weighing just 90 lbs, I am always hungry but never feel as though i have ate. I am to the point of almost avoiding food because it makes me feel so much worse. I have been working with a dietician for the IBS and all I am doing is getting worse. She then suggested that it could be celiac since the more I eat wheat and other grains the worse I am feeling. She is getting me the blood tests through a new doctor, hopefully a more open-minded one. Then se is hoping on getting me on a gluten free diet. I am just wondering if anyone has advice on how to start and how to make this major lifestyle change go more smoothy (i usually only eat breads and pastas) also what are some on the hidden things that have gluten in them that I should look out for? I would appreciate the advice.

Thanks,

Lindsay

You didn't say that you were a vegetarian. For most people who just happen to eat wheat products as the majority of their diet, the key to a healthier diet and lifestyle is not merely to switch to alternative grains and starches, but to replace much of them with higher nutrition foods. In other words, you should substantially increase the quantities of vegetables, fruits, meats, and fish in your diet.

It sounds like your present doctors were planning on diagnosing you on the autopsy.

[linds]

Thanks for all the advice so far. I am not a vegetarian. and am a VERY picky eater. I like most vegetables raw but won't eat any of them cooked. I also eat a great deal of fruit with the exception of some of the tropical ones like pineapple and kiwi's i'm allergic to them. I also eat a lot of fish and meat. Where I live we go fising and hunting for some of our meat.

I am also worried that since I do live in a small town with only 2 grocery stores that finding gluten free products will be difficult. any suggestions on that?

[Shalia]

Thanks for all the advice so far. I am not a vegetarian. and am a VERY picky eater. I like most vegetables raw but won't eat any of them cooked. I also eat a great deal of fruit with the exception of some of the tropical ones like pineapple and kiwi's i'm allergic to them. I also eat a lot of fish and meat. Where I live we go fising and hunting for some of our meat.

I am also worried that since I do live in a small town with only 2 grocery stores that finding gluten free products will be difficult. any suggestions on that?

amazon .com will be your FRIEND. Shop online. You can find all the tasty food, and amazon ships free if you buy more than $25 (which is *not* hard to do.)

There are tons of online specialty stores. Oh, and the best bread (in my NSHO) is Pamela's Wheat Free.

Good luck to you.

[Kody]

amazon .com will be your FRIEND. smile.gif Shop online. You can find all the tasty food, and amazon ships free if you buy more than $25 (which is *not* hard to do.)

There are tons of online specialty stores. Oh, and the best bread (in my NSHO) is Pamela's Wheat Free. smile.gif

I'm in the same situation as linds... but uhm, I was going to ask, does the online shopping really work that well for food? I mean like... is the food fresh? does it ship decently fast? I suppose I'll try it out.

[RiceGuy]

I'm in the same situation as linds... but uhm, I was going to ask, does the online shopping really work that well for food? I mean like... is the food fresh? does it ship decently fast? I suppose I'll try it out.

It will depend on the company you order from. Since I make all my food from scratch, I have only purchased basic ingredients and such. Grains, flours, beans, etc all keep fairly well, so the freshness aspect I'm hoping would not normally be an issue. There are limits of course, depending on the item. Something like bread isn't going to be fresh for very long. I would guess that the pre-packaged foods sold directly from the companies which make them would almost certainly be quite fresh.

[tarnalberry]

There are lots of hidden things to look for, that aren't so bad, but *just* annoying enough that I recommend starting with eating natural, whole, unprocessed foods. Stick with whole produce, meat, eggs, dairy (if you can have it), and gluten free grains (rice, corn, millet, quinoa, buckwheat) and legumes. Yes, it'll require a bit more cooking, but it's also more peace of mind. You'll still need to look around the kitchen for cross contamination possibilities, but this forum can tell you all about that!

[linds]

Wish me luck! I have an appointment with a different GP tomorrow and am going to insist on getting the complete celiac panel. Hopefully this one will listen to me when I tell that that its not IBS!!!