Emily Elizabeth

I know how you feel. I have been trying to be gluten free for about a month and I still wonder if I am getting small amounts from my makeup and such. I did find out that my lipstick had gluten in it and I stopped using it. It is truly overwhelming to begin this new lifestyle. I wish there were more dieticians out there that could help us through it. I would love for a dietician to come to my house and look over everything I use on a daily basis. That would be so helpful. We are already stressed out enough having to deal with the diagnosis, it's really hard to also have to figure out exactly how to "take the right medicine" too. We're not doctors or pharmacists, but it seems we have to be - and fast.

The one thing I would ask your doctor would be to test you for any nutrient deficiencies. I have been reading a book about Celiac Disease and they say that doctors should test for that. Mine didn't so I'm going to ask them to at my 6 week follow up appt which is approaching. Good luck!

hi,

I was just diagnosed with Gluten sensitivity in May 2007 & have been gluten free for about two weeks. My doc says blood work does not show celiac disease but I've been told blood work are not always acurate. I haven't noticed that much change, still have stomach pains, fatigue, brain fog, no energy..

not sure how gluten free I am though when you consider I use same pots/pan as everyone else in my house & not sure if my shampoo's & lotions are gluten free. right now it's overwhelming, I'm going to see my doctor tomorrow to just go over this & see what else he can test me for, what kind of damage gluten has already done.

Please advise what else I should ask my doc about or what other test I should get.

Thank You.

Good luck with your appointment next week. If you do have Celiac Disease, I would recommend getting a book about it. It really helped me cope with it. I would get very frustrated when people would ask me questions about it like I should be an expert already. The book I got is called "Celiac Disease: A Hidden Epidemic" by Peter H. R. Green, M.D. and Rory Jones. It helps you understand it better and you can explain it better to people as well.

About telling your friends, I wouldn't be embarrased about it. I think it is better to let people know. Imagine if they all surprised you with a birthday cake. That would be worse. Most people just think of it as an alergy to gluten. They don't look at me differently.

I'm very new to Celiac Disease. I've just had a biopsy done and it strongly suggests that I have Celiac's. I am waiting to talk to the Dr. to see if I need to do more blood tests before starting a gluten free diet! I can't believe how many products there are to watch out for

Am not sure how I feel about telling my close friends about this, as I am still having troubles dealing with this myself! We often go out for lunch but in my small town it's not going to be possible to find Gluten-free places to eat!

I keep hoping the Biopsy is wrong, but I guess I'll find out next week.

One question though, is foot cramping a symptom?

Yes! I used to get foot cramps all the time near the end of the day!! They have gotten better since I've been gluten free, but I still get them once and awhile.

I keep wondering if I should go on a soy-free and dairy-free diet too. I am definitely feeling better, but I still know that I'm not right yet intestinally. I don't know if my intestines just need time to heal (strictly gluten-free since 5/15/07 - glutened 3 times) or if soy or dairy are the culprits. What made you decide to cut them out of your diet?

I have soymilk everyday. I guess I could do rice milk instead but there is less protein and calcium in that. Do you have suggestions for what to eat in place of soy and dairy?

I have been on a gluten-free diet since around Mother's Day...and a dairy-free and soy-free diet for about the past 3 weeks.

My gums were receded too. My dentist actually mentioned it and told me I needed to brush more lightly. I had no idea that was related to celiac disease.

I think my gum lines arent as receded.

I hve baked many things successfully but now can't eat corn, potato, chocolate, dairy egg yolks, nor soy. Which makes it difficult to do the cake and the icing!! I really want him to like his cake!

I have a recipe book that has great recipes for baked goods without using gluten, eggs, dairy (and one other thing I can't remember at the moment). It's called "Cooking Free." I'd be happy to post a recipe for a cake and icing if you like. Also I have heard that Whole Foods (a grocery store chain near me) has a wonderful gluten free bakery. Here's a link to their store locations.

Open Original Shared Link

You can also order cakes from this store - I haven't tried it yet, but I hear from other Celiacs that it is really good:

Open Original Shared Link

I hope this helps!

I love to bake too! I was just diagnosed and very depressed at first until I bought a few cook books and realized I could still bake! Here is a link to a gluten-free Cherry Pie recipe I got from one of the books and the name of the book as well. The pie is great. I just made it again for a father's day bbq and no one could believe it was gluten-free!

Open Original Shared Link

This book has recipes for cookies, cakes, etc. It's great!

Good luck!

Emily

I have my 6 week follow up appointment since I was diagnosed next Tuesday the 26th and I am very nervous. The doctor told me that I would have to have another endoscopy if I was not doing better. Now I am definitely feeling better, but I am still having intestinal problems (loose stools at least 4 times a day) but it is better then it was before. I don't have the fogginess or extreme hunger and fatigue or the pregnant belly. I also have noticed that I get more sick when I am glutened (or suspect that I am) so that seems to tell me that I'm not ingesting it everyday (I wake up in the middle of the night and have to urgently go to the bathroom 2-3 times).

What advice do you all have? If they suggest an endoscopy should I do it? Also, they never tested me for vitamin deficiencies. Should I ask that they do that?

I assume that it is definite that I have celiac disease right (wishful thinking)? I guess they are just going to check to see if I may have something else in addition to it?

Here are my test results (not really sure what this means):

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Thanks for any help/advice you can give!

I just thought I would find out how all the newbies are doing. There were a lot of us that were diagnosed in the last few months.

I am still not right, but I have noticed that I am getting better. My hairdresser (who I hadn't been to in years since she moved) said that I had a lot of new hair growing in. I'm taking that as a good sign (though I hadn't realized that I had lost any hair).

My intestines are still not working properly (going at least 4 times a day), but I think I have figured out what happens to me when I am "glutened." So at least I know that I am not accidentally ingesting it on a daily basis (right?). When I went to PF Changs and when I had a bbq at my house I believe I was glutened because both times I woke up in the middle of the night and urgently had to go to the bathroom (2-3 times). So I think that is the sign that I was glutened.

People at work are saying that I look a lot healthier, etc. so that's good too. I'm no longer foggy at work, or extremely hungry. It seems to have balanced out a lot.

Anyway, I'd love to hear how all the newbies are doing and will always take any advice the veterans have to give!

Thanks for posting how you were feeling. I am new to this and my pity partys are getting to be further apart, but I'm still having them. I guess I felt like I should be "stronger" and be over it by now. Seeing your post (and knowing that you have been dealing with this for over 10 years) makes me feel better about it. I am realizing that this is not something that we can ever "get over." We can just learn to deal with it better over time. I think that once and a while it is healthy to go ahead and just be upset with it. As long as we bounce back like you did! Thanks again.

Cherry Pie recipe posted in a new post! I hope you all enjoy!

I thought I would share my pie crust recipe with everyone. Dealing with this new diagnosis has not been easy, but realizing that I could still bake a cherry pie (or any pie for that matter) was really exciting. Though it was not as easy as working with wheat flour, I embraced the new challenge.

(can't seem to get this image to post, I made it 150x135 pixels. Advice welcome!)

Four Flour Pastry

"The Gluten Free Gourmet"

By Bette Hagman

Ingredients

2 cups Four Flour Bean Mix (listed below)

1/4 cup sweet rice flour

1 tsp xanthan gum

1 tsp baking powder (gluten free)

1/2 tsp salt

2 tsp sugar

1/3 cup margarine or butter

1/3 cup Butter Flavor Crisco

1 small egg or 3 tbsp liquid egg substitute

1 tbsp vinegar

3 tbsp ice water

Sweet rice flour for rolling

Four Flour Bean Mix (exchanges cup for cup with wheat flour)

FOR 9 CUPS:

2 cups Garfava bean flour (I used Garbonzo)

1 cup sorghum flour

3 cups cornstarch

3 cups tapioca flour

FORMULA: (If you want to make a different amount)

2/3 Part Garfava bean flour

1/3 part sorghum flour

1 part cornstarch

1 part tapioca flour

In a medium bowl, whisk together the flours, xanthan gum, baking powder, salt and sugar. Cut in the margarine and Crisco in small pieces until you have shortening the size of lima beans (not cornmeal).

Beat the egg with a fork and add the vinegar and ice water. Stir into the dry ingredients, forming a ball. You may refrigerate to chill, but it is not necessary.

Divide dough into two halves and roll the first half out onto plastic wrap dusted with sweet rice flour. Transfer to a pie tin by inverting the plastic wrap. Add the pie filling and roll out the second half of the dough. Place the second crust over the filling, seal the edges, and bake as directed for the filling used.

For a baked pie shell, prick the pastry with a fork on the sides and bottom. Bake in a preheated oven for about 12-14 minutes. Cool before filling. Makes on 2-crust pie or 2 pie shells.

MY NOTES:

• I used Garbonzo flour for the Garfava flour (it's a mix of Garbonzo and Fava bean flours anyway) and it worked out great. I mixed up 9 cups of the flour and put it in the (well cleaned out) container that I used to keep my flour in. I feel "whole again."
  
• I also used a dairy free margarine.
  
• I used wax paper instead of plastic wrap since I could only imagine that going horribly wrong.
  
• It took a long time for me to find the sweet rice flour, but I did some searching through these forums and someone suggested Mochiko Sweet Rice Flour and said it could be found at any asian or global foods store. I found it in the first one I went to!
  
• When I was rolling out the pastry, I made sure to put sweet rice flour on my rolling pin sock and on the wax paper.
  
• If the dough does not form nicely into a ball, add more ice water sprinkling tsp by tsp until it forms a ball.
  
• Minimize handling of the dough since you want to keep it cool.
  
• I used 1 can of Comstock Cherry Pie filling.
  
• I used a non-stick gray pie pan since I was told those do better then the typical glass ones for gluten free crusts.
  
• I put tin foil loosely around the edges to cover the crust for the entire time the pie was baking and the crust turned out perfect.
  
• PIE CRUST CINNAMON ROLLS! There will most likely be leftover dough. I ate some of it, just to see what it tasted like. Then ate some more to be sure I liked it of course! Then I rolled out the rest in a rectangle about an 1/8" thick, spread some of the dairy free margarine over the dough and generously sprinkled a sugar and cinnamon mix over the entire rectangle. Starting at the long end, I rolled the dough up into a short roll (It may be crumbly, but it's okay) and rolled the outside in cinnamon and sugar too. Then I cut the roll into 6 cinnamon rolls and placed them in an oven safe container to cook along with the pie. These may finish cooking earlier so keep an eye on them.
  

I hope everyone enjoys this recipe! I'd love to hear how it turns out for you and your own modifications!

If you spend over 7.5% of your gross adjusted income on unreimbursed medical expenses (which include the 20% most people pay whenever they have a procedure done, all copays for prescriptions/visits, etc) then you can claim that as a deduction on your taxes. If you have celiac, you can also deduct the difference between what you would have spent on an item and the cost of that item as a gluten free food cost you. (Regular bread $2, Gluten free bread $5, tax deduction = $3) I looked today and you don't actually need biopsy results, you only need a letter from your doctor stating that a gluten free diet is medically necessary for you. It requires you to save your grocery receipts just like you would save your medical receipts, but it's worth it to save the extra money in my opinion.

That's wonderful news! I am definitely going to give this a try. Do you know how you constitute what the price of the regular product is? Do you simply choose a popular brand as a base point? Thanks for posting this.

No, Emily you can post here other peoples recipes from books and such, just give the author the credit they deserve. Post away.. it sounds goood!!

Great! I will post it tonight in a new post.

Yes, PLEASE post the recipe. I love cheese danishes!

I made a cherry pie yesterday and it turned out great! I should say I made a crust. I used a can for the cherry pie filling. I would be happy to share (it's from a book, are there laws against that if you post the author and title?)

I feel like I have had too much to drink or something.

If it's any consolation, you're not alone! I feel the same way. Right now actually! It's like I've had a couple of glasses of wine (but don't feel the positive mood effects) and my eyes are sensitive to light. I feel like I'm dropping the ball so to speak at work as a result. I just can't focus on anything for very long. I've been taking Centrum Performance vitamins and a calcium supplement with vitamin D everyday. I seem to feel much better when I'm at home on the weekends, I have minimal fog and my intestines behave better if you know what I mean. Just not as much. I'm wondering if I'm getting glutened too or maybe if work is just stressing me out (I don't feel that it is though). I've been trying to be gluten free for about a month now.

I would definately recommend trying all of them beforehand!!! How fun would that be?!

Are you in Atlanta? Wildfire has a gluten-free menu there and they even have gluten-free buns for their hamburgers. I'm not in Atlanta, but I've heard about it.

Risotteria in NYC has a great gluten-free menu, awesome breadsticks, pizza, and carrot cake! Maybe you need a TRIP for your anniversary!!

Be sure you do talk to them when you go to Ruth's Chris so that you can determine what's safe. I did go over everything I ordered with them. Any time I've eaten at an expensive restaurant, I've always been taken good care of.

I'm near Washington, DC. Wow... the Risotteria in NYC sounds amazing! Maybe we do need a trip. That's an exciting idea! I feel much more positive now that I feel like I have some fun options. Thanks!

Actually, I had just flown into town after being away, it was late, I was tired, and I believe I did cry!

Here are restaurants with a gluten-free menu, that might make it easier. It's hard to eat out, especially when you're new to this.

Mitchell's Fish Market

Bonefish Grill

Outback Steakhouse

PF Changs

Cheeseburger in Paradise

Carrabas

Maggianos (no gluten-free menu, but chef comes to table)

I have eaten at Ruth's Chris. I don't remember all about it, but I did talk to them about ingredients and got a good, gluten-free meal.

If you eat at the Moroccan place, you might want to go in there before your anniversary and talk about exactly what you'll be ordering. That way if you aren't comfortable with it, on the actual night you can go somewhere else.

Thanks for posting this list. That is very helpful. I'm glad to hear about Ruth's Chris too. That sounds promising. Of course my husband thinks we should try all of these restaurants beforehand, just to be sure=, then chose the best one - I know that's his stomach talking!

Yikes! I think I would definitely cry if that happened to me on my anniversary (especially with the emotional state I am in right now). I don't know if it's worth taking the chance. I really want to have a special evening though and have no idea what to do. it seems that everything involves dinner. Maybe a steak at Ruth's Chris steakhouse? They should be able to handle a gluten free request I would imagine. Ugh. I can't wait until I am feeling healthy again and I have a better handle on this new lifestyle.

I was just diagnosed with celiac disease and have read that lipstick and lip gloss can contain gluten. I rarely wear lipstick, but wear gloss every day.

What's the best way to find out if the products I usually use are gluten free? Do companies usually answer emails or do I need to call? Calling is a bit difficult during the day while I'm at work, so I would hope I could get an email answer. Do they usually provide an answer right away or am I likely to get some employee who doesn't even know what gluten is?

The three lip glosses I use most are Victoria's Secret Beauty Rush, Sally Hansen Maximum Plumping Lip Treatment and Fresh Lip Shine. Anyone know if these contain gluten?

There's a whole lot of chemicals in these glosses, but I don't see wheat of any sort listed in the ingredients. I'm assuming gluten could be hidden in other ingredients. What are these ingredients I should look for?

Also, can anyone recommend a good organic lip gloss? No parabens, no petroleum derived ingredients, etc. Aubrey's Organics has a couple glosses, but I don't really like any of the colors. They also come in pots, and I'd like gloss in a tube.

Thanks in advance for your suggestions!

I am new to all of this as well. I have been emailing every company I can think of about products that I use. They are usually surprisingly helpful. I use clinique lipstick and found out that one of mine contained wheat bran under the odd name of triticum vulgare.

They responded to me in the same day when I emailed it was really nice. Since then I emailed about more products I have and they have not responded. I guess my list was a little long!

I use clinique lip gloss. I doubt that it's organic but it is gluten free (glosswear for lips - tender heart) I wish you the best of luck!

I need some advice. My husband and I went to Marrakesh, a Moroccan restaurant in DC, on our first official date back in 2001 and have been going for special occasions ever since. Our 5 year anniversary is coming up in June and I would really like to go there, but I don't want to get glutened and therefore prolong the healing process (diagnosed with Celiac Disease on 5/15).

I called the restaurant and the person that I spoke with had not heard of gluten. When I explained what it was she told me there were just a few things to avoid. She said that everything was fresh so there would be no additives.

Have any of you been there before or to a similar restaurant? Do you know what things to avoid when eating at moroccan restaurants? I have pasted the menu below and italicized what the restaurant suggested that I not eat:

Any help or advice would be much appreciated! Thanks in advance.

A broken arm doesn't heal right away, a burn doesn't heal right away, why should a damaged gut and immune system be magical?

I love that analogy. I'm going to use that when I try and explain this to people (and to myself!).

It's nice that there's a bunch of us starting gluten-free at the same time!

It definitely is. It's really helpful to hear that other people are going through the same thing with the same symptoms. Some of my family members are questioning whether or not I have celiac disease since I'm not miraculously better right away. I explain that many others have the same symptoms I do and have been diagnosed and are attempting to be gluten free as well. The advice about how to clean out your kitchen and get rid of hidden gluten in your lifestyle is helpful as well. I think some of my family members don't believe that even a small amount of gluten will cause me to remain sick. I get the feeling that they think I'm overly paranoid since I'm checking my shampoos and lipsticks and hairsprays. It's great to talk with people who understand and can provide helpful advice.

Dear Karen,

I agree that Emily should eat purer foods when possible. In the beginning, your system is more sensitive. You have to do it a little at a time. I was ecstatic there were things I could have that are not something I have to cook myself! It is exhausting having to make everything if you are like me and on a budget. I must say that if people can buy everything organic, it is best. I would if I could!

Thank you for posting the gluten-free lists for Wendy's and MacDonald's! I do not know if I will ever be brave enough to attempt eating out, though! I am scared to death of cc! I have too violent a reaction to gluten! Unless I can actually stand over the people preparing the food, I don't feel I can trust them! They do not understand the protocol.

Sincerely,

NoGluGirl

I think both Karen and NoGluGirl are right about needing to eat purer foods. I think I was focusing so much on what I wasn't allowed to eat, that it made me want to eat it all the time. I spent most of my day either at multiple grocery stores or in my kitchen cooking (I still haven't found sweet rice flour - want to make a pie for dad's b'day). I have to say that I did start feeling better midday. For lunch I made an egg white omelet with spinach, red peppers, onions and mushrooms (delicious) and for dinner I made a pot roast with Kraft Catalina dressing potatoes, onions and carrots. Then I started preparing the Memorial Day food for tomorrow which was potato salad and corn macaroni salad made with gluten free mayonnaise of course. Then I made some vegetable bruschetta (not sure what I'm going to eat that on just yet).

I really had to fight the urge to eat processed foods like gluten free crackers and Tostitos though! I had broccoli and cauliflower instead and that calmed down my cravings. It's definitely worth it if I start feeling better. And like you all said, you can add things back in later (that's what I will keep telling myself). I just hope I can keep this up when I head back to work on Tuesday. Do you all think that home made gluten free bread will be okay or is that something that I should hold off on too? PB & J's are great to take to work for a quick fix to stop the fatigue and fogginess.

Thanks Karen for your list as well! That will be very helpful when I am on the road and have run out of lara bars (I love them!). It's also great to hear about the Boars Head meats too.

I'm not sure if I have diverted too far from the original topic here so I apologize if I have. I'm a newbie to the whole forum thing too!

I have a list that should really help.

Bless you for posting this! I am so tired of reading labels (I'm a newbie as well), this is very helpful!