Gluten-free here we come....

[wvjules]

We will get the actual diagnosis next week from a pediatric GI doctor but as of right now DD's physician thinks she has Celiac disease. She will also be tested for other food allergies and lactose intolerance. I see a great change in our dietary future.

So tell me, how hard is it to go to a gluten-free diet?

She is also on a starch-free diet until we see her doctor next week. Do you realize how difficult that one is? I didn't realize how much starch was in foods!

 

[Christine]

Wow, were they able to determine that from the tests she had yesterday? I thought you had to have combo of a blood test and then a biopsy of the small bowel to get a diagnosis.

 

[wvjules]

No, that's why I said we won't have the diagnosis until next week for sure. After her cat scan her doctor called and sent us straight to the emergency room. We go to National Hospital for futher testing next week. We were told not to go gluten-free until after the testing is done because it can alter the results, obviously. I am just preparing myself for the possible changes on the horizon.

 

[Cheshire Figment]

I would suggest going to the disABILITIES Forum and look at Post #3 of the disABILITIES FAQs. There is a large section in that post dealing with special dietary needs, as well as many related links. You can get directly to the disABILITIES FAQs by following the link in my signature.

This is a very common topic of discussion in the disABILITIES Forum.

 

[Christine]

That's why I said we won't have the diagnosis until next week for sure. After her cat scan her doctor called and sent us straight to the emergency room. We go to National Hospital for futher testing next week. We were told not to go gluten-free until after the testing is done because it can alter the results, obviously. I am just preparing myself for the possible changes on the horizon.

Yeah, that's true about not going gluten free until the diagnosis.

I toyed with the idea of going gluten free and, fortunately, these days it is much easier. Our local Wegman's has an entire aisle designated gluten-free.

I think there is so much good literature out there now that you will find some good guidelines and diet plans.

Good luck to your daughter and I hope it all works out okay.

 

[DVCisME]

If you are going to the GI dr to perform more tests she must still be eating gluten for an accurate test.
Going gluten free is hard but can be easy. A lot of things are naturally gluten free- vegetables, meat, fruit. Stuff that is processed is harder. You will be suprised to see how much food contains gluten. Some products that I would recomend are kinnikinnick products, particularly the pancake mix. Betty crocker now sells gluten free cake mixes, brownies, chocolate chips- they actually taste good. They even have recipes on their website. Chex cereal has some gluten free cereal, they also have recipes on the back, or side. A good one is the chocolate and peanut butter mix. I also like elanaspantry.com for recipes. Edy's ice cream also has a lot of gluten free options!!!!
A lot of buying gluten free is trial and error, from my experience. And it seems to be an acquired taste. To be honest I still sometimes have some gluten, even though I know it is bad for me, becuase it is a hard adjustment. I would try to supplement with fruits, vegetables, easy snacks that she can carry with her. Also there are a lot of fruit snacks that are gluten free
I have other suggestions. Don't want to overwhelm you. Feel free to pm me! Also if she does have celiac disease in about two weeks eating gluten free there is a big change in how she will feel.

 

[Kathi OD]

If you eat a lot of processed foods, it will be difficult. If not, it's fairly easy. You'll learn to read every food label. The following link will help you identify foods and ingredients to avoid. http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

In addition to the foods listed by DVCisME, Kraft does a good job of labeling their products, as they put the source of the ingredient on the label if it can cause a dietary problem. Target carrires a limited supply of gluten free foods. In addition, many companies will list on their websites those foods which are gluten-free.

There are lots of resources online to help you develop a gluten-free diet.
For starters:
www.celiac.org
http://www.mayoclinic.com/health/celiac-disease/DS00319
http://www.saintbarnabas.com/SERVICES/celiac/index.html
http://americanceliac.org/
http://www.celiaccentral.org/

One of the positive sides of a gluten-free diet can be an improvement in overall health (that's in addition to the improved gastro-intestinal benefits). Since starting on the gluten-free diet, my sinus headaches have disappeared (I had them almost every day for about 5 years...maybe longer), my Rosacea improved, and I slept better....all within about 3 months of being gluten-free.

Good luck on your journey. I was diagnosed with celiac 15 years ago. Heightened awareness has made it much easier to stay on the diet today than it was back then.


ETA: I can't imagine going starch-free. I would think that would be harder than gluten-free.

 

[fimac]

Good luck.

I found the Donna Korn books to be a good place start with kids. There are a number of message boards devoted to celiac they are good sources for support.

Look are her diet and see what you have to change and what you get to keep. If you swap a food that she love for the gluten free equivalent she is unlikely to like it they do not taste the same, but you do adapt.

You can start trying foods now to find what she likes. You will need to look at your kitchen to see what needs to be replaced (cutting boards, wooden spoons etc)

You will make mistakes, but we all do.

 

[MIGrandma]

I went gluten-free a few months ago, after self diagnosing when my doctor said I must have irritable bowel syndrome. Her answer wasn't good enough for me, so I did some research and decided to try going gluten-free and see what happened. Within 2 days I was much better. I do not have celiac's disease as I don't have all the symptoms, but just a sensitivity or allergy to wheat gluten. But I no longer take the medication she prescribed for the IBS. I do great if a completely avoid gluten, but occasionally do crave a fast food burger or something that has wheat in it and if I know I'm going to be home the next day I'll sometimes give in to the craving.

I mostly eat fresh meat (chicken, turkey, some beef/pork), fresh or frozen vegetables, fruits. I'm diabetic also, so try to avoid certain things for that as well and in avoiding wheat thus avoiding eating any cakes, pies or cookies that is helping with my diabetes as well. I do miss bread, and have not found one I truly like yet. I eat some gluten-free packaged snacks (pretzels, chips, etc.) but have found those are way, way more expensive than regular so I don't buy them often.

I love pasta and use Tinkyada rice pasta (penne and spaghetti mostly, but elbow macaroni too like for goulash or pasta salad) for my pasta fixes. And I read labels all the time. It's nice that many companies are putting the allergens, like wheat, nuts, milk, etc. in bold print underneath the ingredient list. Very helpful.

You have to be careful because gluten can be in things you wouldn't think would have it like some vitamins, yogurt, even tomato soup, etc.

Good luck to you. It's kind of overwhelming at first, but you get used to it.

 

[Kathi OD]

I went gluten-free a few months ago, after self diagnosing when my doctor said I must have irritable bowel syndrome. Her answer wasn't good enough for me, so I did some research and decided to try going gluten-free and see what happened. Within 2 days I was much better. I do not have celiac's disease as I don't have all the symptoms, but just a sensitivity or allergy to wheat gluten. But I no longer take the medication she prescribed for the IBS. I do great if a completely avoid gluten, but occasionally do crave a fast food burger or something that has wheat in it and if I know I'm going to be home the next day I'll sometimes give in to the craving.

Grandma, I sure wish you had asked your doctor to order the tests for celiac, as you don't have to have ALL the symptoms to be a celiac. There are many celiacs who have one or 2 symptoms or, in some cases, no symptoms at all.

 

[mtdevine615]

Really not as hard you think going gluten free. We started at the beginning of Feb. I think the hardest part for us is when we want something fast and we're out somewhere. More places then ever seem to have gluten free menus. We have had to eat McDonalds a few times and DW just gets a salad or some times a burger without a bun. That causes some funny looks.

 

[mykidsand_i]

Just be careful with the stuff that you wouldn't THINK gluten is in- some medicines even contain gluten...Turkeys, chickens and beef sometimes contain gluten (that hamburger at McDonalds probably even could contain traces of it!!!)...NOT because that's what the animals 'eat' and if it's in their diet, it is not found in their natural meat....but because of the processing now days- and a TON of stuff is processed even if we may not think it is! We learned about that a while back in a training course we took! It's in a lot more things than 'pastas, breads, cookies, cakes and flour products...' A lot of the chicken now days is NOT gluten free (because of their diets)...you have to get 'natural' chicken with no injected growth hormone, dyes or anything. Almost ALL fast food chicken contains gluten. Even if it's not breaded.

Also, I know there are several condiments that contain gluten- some brands of ketchup (if you are going 100% gluten free- you can't just have 'small/tiny amounts' and have it be ok)...ketchup at McDonalds does contain gluten...so do some of the dressings there for the top of salads!

Yeah, the only way to guarentee 100% gluten free is not to eat anything that's processed (that almost cuts the menu down to NOTHING at any fast food place!!!)...

 

[Traveliz]

Much easier now than it was 25 years ago when my husband was diagnosed - the options have really opened up for him in the past few years as more people are being diagnosed and more products are being developed.

In a nutshell the easiest way to go gluten free is think simple unprocessed foods, meats (plain), vegetables and fruits are all not a problem. Once you start mixing them up with things or putting sauces on top of them you have to think.

Liz

 

[Kathi OD]

Just be careful with the stuff that you wouldn't THINK gluten is in- some medicines even contain gluten...Turkeys, chickens and beef sometimes contain gluten (that hamburger at McDonalds probably even could contain traces of it!!!)...because that's what the animals 'eat' and if it's in their diet, it is found in their meat. We learned about that a while back in a training course we took! It's in a lot more things than 'pastas, breads, cookies, cakes and flour products...' A lot of the chicken now days is NOT gluten free (because of their diets)...you have to get 'natural' chicken with no injected growth hormone, dyes or anything. Almost ALL fast food chicken contains gluten. Even if it's not breaded.

What kind of training did you go to? Everything I have read, from doctors, scientists, and nutritionists say this is not true. That the only way meat will be contaminated with gluten is from human manipulation.

Gluten is not present in animal meats due to the food they eat because the No meat should contain gluten UNLESS it has been processed in some way. When an animal consumes gluten, its digestive enzymes break it down into short sequences of amino acids before it can be absorbed into the animal's bloodstream. From there, the animal uses those amino acid to build the proteins specified by their genetic code. Many of these proteins are similar to those of humans, such as muscle proteins, ect. Additionally, almost 100% of the chickens, turkeys, and cows raised for food are fed corn, which doesn't contain gluten.

The meats at fast food places could contain gluten, but not because it is present in the meat from the foods the animals ate, but because of how the meat was handled or treated after slaughter.

Also, I know there are several condiments that contain gluten- some brands of ketchup (if you are going 100% gluten free- you can't just have 'small/tiny amounts' and have it be ok)...ketchup at McDonalds does contain gluten...so do some of the dressings there for the top of salads!

Quite true. This is why you have to read all labels and ask questions of food companies as to whether their foods contain gluten.

Yeah, the only way to guarentee 100% gluten free is not to eat anything that's processed (that almost cuts the menu down to NOTHING at any fast food place!!!)...

Yep, but think about how much healthier you'll be eating if you can't really eat at a fast food place any more.

 

[MIGrandma]

Grandma, I sure wish you had asked your doctor to order the tests for celiac, as you don't have to have ALL the symptoms to be a celiac. There are many celiacs who have one or 2 symptoms or, in some cases, no symptoms at all.

I did think it was odd that she didn't have me tested when she first diagnosed it as IBS. But, then when I told her I was going to try going gluten free on my own and see what happened she thought it was a good idea. Now I feel why should I go through the expensive testing, that my insurance probably wouldn't pay for, when I'm doing great just avoiding the gluten?

 

[wvjules]

So, avoid processed foods and eating out and read labels very, very carefully.

We might have to do a big once-a-month trip to Whole Foods for staples and continue to get fresh fruits and veggies at home.

Not eating FF is going to be the hard part. We do it a lot less than we used to but we still do it *way* too much.

 

[Kathi OD]

I did think it was odd that she didn't have me tested when she first diagnosed it as IBS. But, then when I told her I was going to try going gluten free on my own and see what happened she thought it was a good idea. Now I feel why should I go through the expensive testing, that my insurance probably wouldn't pay for, when I'm doing great just avoiding the gluten?

Oh, I hear you on that. I just think your doctor did you a huge inservice by not finding out exactly what was wrong. KWIM?

I don't know what kind of insurance you have and so yours might not have covered them, but mine did pay for the tests, both the blood test and the biopsy.

 

[Kathi OD]

So, avoid processed foods and eating out and read labels very, very carefully.

We might have to do a big once-a-month trip to Whole Foods for staples and continue to get fresh fruits and veggies at home.

Not eating FF is going to be the hard part. We do it a lot less than we used to but we still do it *way* too much.

Yep, not eating FF is probably the most difficult part of the gluten-free diet.

Be aware, that the gluten-free selection of processed foods at Whole Foods isn't all that great. At least not at my Whole Foods. You might do just as well at your local market.

Make sure to check out those websites I listed in a previous post. They will provide you with lots of information about the disease and managing it. You'll also be able to find recipes for making tasty gluten-free meals for the entire family.

Pamela's brand of gluten-free cookies are pretty good. Their chocolate chip cookies are excellent! Expensive, but taste great for a treat. My 11yo neice also has celiac and she them.

I don't think anyone mentioned that many celiacs are also lactose intolerant. I mention this just in case DD still has some issues after eliminating gluten from her diet.

 

[MIGrandma]

So, avoid processed foods and eating out and read labels very, very carefully.

You don't have to completely avoid eating out. Many restaurants have gluten-free menus, or if not if you tell them about the celiac's they will be more than willing to work with you to find something on their menu that you can eat. DH and I recently ate at a restaurant while on vacation and when I told the waitress of my wheat allergy, she came back with a paper that one of their managers had made up. It listed every single food they offered, and the allergens for each one, if any. So I was able to make up a great meal for myself from that list. It really helped a lot.

At another restaurant I asked about gluten in the cole slaw so she went to check with the cook and it did have less than 2% so I avoided it. I ordered the grilled catfish, and she came back to the table to let me know there was a little bit of wheat in the spices they put on the fish, so I changed my order to lemon pepper instead. She was very accommodating, and I think most servers do try to be helpful when someone with an allergy, or celiac's disease, is trying to order off the menu.

 

[2girlsmom]

My sister in law has celiac's, and I would agree that there are a lot of foods you wouldn't think of with gluten, to include most hams (the only one she can have is Cook's ham), some sour creams, etc. Also, her celiacs does make her somewhat lactose intolerant, so she has to limit her dairy, anyway, but doesn't have to cut out everything. There are more and more gluten free options hitting the market all the time, which is a good thing! I think GF will be MUCH MUCH easier than starch free, which absolutely frightens me (but then I work for a flour milling company, so find such things horrible). There are a number of grains that you CAN have under GF, including rice, corn, quinoa, teff, millet, sorghum, amaranth; hazelnut flour is also very common in GF applications. So many cereals are fine, for example, but you do have to be cautious. I know my sister in law can have rice krispies, for example, but not some store brand crispy rice cereals because they add gluten products to the cereal. Rice and Corn Chex are both fine as well. But my sister in law CAN eat FF, just without the buns on burgers, and takes her own salad dressing for salads usually (many dressing use wheat thickeners).