Emily Elizabeth

My family wanted to go to Olive Garden this weekend and I was very skeptical that they would be able to provide me with a gluten free meal. I was prepared to just order coffee. I asked the waitress if they are able to provide a gluten free meal and she said she would ask the manager. To my delight, she then came back with a print out of gluten free items I could order. The print out had the current date at the bottom and stated that it was valid for that day only. It was nice to know that they were making sure that things were up to date. I ordered the Pork Filettino and it was very good. (Grilled pork tenderloin marinated in extra-virgin olive oil and rosemary. Served with Tuscan potatoes and bell peppers.) They brought out the salad in a fresh bowl without the croutons and everything went very well. As far as I can tell, I wasn't glutened. Yay!

It only took about 2 months or so for my brain fog to go away. I know that everyone is different though depending on the level of damage done initially. Maybe you are being glutened somehow? Just by small trace amounts? I found out the gluten free cereal I was eating wasn't gluten free and also that my lipstick had gluten in it. After I cut that out I started feeling better. I still haven't gone longer then 2 weeks without getting glutened though. I know this is frustrating. I wish I had the answer.

Yep, that all describes how I feel. How long must I be gluten-free before it goes away? I'm at 3.5 months now.

WH

Wow. That's a difficult situation. I definitely feel for you. I would probably go gluten free and not worry about the trace amounts at first. Even those of us with Celiac have a hard time avoiding the trace amounts in the beginning especially. Then once you've got the diet down, if you are still feeling symptomatic, start avoiding all trace amounts as well. Either way, it would be good to go in for an annual check up to find out if you are still producing antibodies. As far as I know if you stop producing them then you are doing okay. But I honestly don't know much. I was just diagnosed back in May! Good luck!

I'm just afraid that I've been given a license to cheat, but 10 years from now I'm going to end up diabetic because I continued to eat small amounts of gluten. On the other hand, I don't want to limit my lifestyle and restrict everything if not necessary. Any thoughts?

I just found this list today. It's on the Giant Food website currently, however, there is no date saying when it was created. It at least gives an idea of what they have!

Open Original Shared Link

Thanks so much Holly! I got mildly sick from a bag recently and have been really missing tortilla chips, but have been afraid to try them again. This info now gives me the courage! Thanks!

***If the 2nd and 3rd numbers in the series of numbers is either 71 or 45 they have been made in the plant with flour.

I just thought I would post what I found out from Clinique today.

No Gluten: (all shades/colors in each category)

(a lot of them contain corn or soy though)

Glosswear for lips

Colour Surge Butter Shine

Colour Surge Bare Brilliance

Colour Surge Lipstick

Naturally Glossy Mascara

Quickliner for Eyes

Superfine Liner for Brows

Touch Tint for Eyes Shimmer Formula

Colour Surge Eye Shadow Quad

Colour Surge Eye Shadow Duo

Colour Surge Eye Shadow Soft Shimmer

Gluten:

High Impact Mascara

Repairwear for eyes (they said pretty much all of the gels for the eyes like this have barley in them)

It was really easy to find this out. They were fast and very accommodating. Here is the number incase anyone would like to call - 1-866-707-2100.

I learned from someone on this forum that Sharp Cabot Cheddar Cheese is okay for me to tolerate. It was really nice to be able to eat cheese again. I get the low fat sharp cheddar and it's wonderful. Supposedly there is no lactose. Of course if casein is a problem then it would not be good. It's so annoying analyzing everything though isn't it? It seems like each week I worry about something else in addition to gluten. This week it's soy. I'm 26, but I feel like I relate more with my almost 80 year old grandmother then anyone else in my family! Haha. I know I've been negative, but I am confident that we will get through this. It's not going to ever be easy, but we will learn to live with it and even live happily with it. As long as we can stay away from gluten (so we don't get so depressed!), and can have a lifestyle that focuses more on fun activities that don't center around food. It's definitely a challenge, but we can do it!

i've cut out most dairy and soy. The only dairy that i can tolerate is cascade yogurt once every other day with no problem. i do not eat straight cheese or drink milk. my diet consists of mainly lean chicken or turkey, some beef, vegetables, fruits, noodles, and kikinikk bread (i do not have any reaction to kikinikk bread btw)

my problems went away when i cut out almost all dairy in my diet. i felt fine until i ate the cookie bar. i just want to live long. celiac disease is destroying my life. im only 20 years old, and im worrying about cancer already. im waiting to wake up from this hellish nightmare as well Emily...

I thank god everyday that my husband has been so understanding. I know what you mean when you say that you don't like the way you look. I feel the same way. Before going gluten free I felt like I really had a handle on my diet and staying fit, however, now it is all can do to simply just stay gluten free. It seems like I am constantly getting cross contaminated so I feel like I can just eat anything as long as it's gluten free. Of course this means I am not eating as well as I was before and now feel guilty at the end of everyday (gained almost 10 lbs). This has definitely been one of the greatest challenges of my life. I just try to remember to put myself in my husband's shoes once a day and I remember how much he must be going through as well. I try and thank him regularly for his support. He is wonderful! I only hope I could be as understanding if he had a similar situation.

Thanks for sharing! I plan to try this tomorrow!

I spoke with the caterer and she assured me that everything would be okay. After the first meal I was mildly glutened. I just went to the local grocery store for the rest of my meals. In the future I will get a room with a kitchen. It will definitely be worth it. Traveling was not fun on this occasion.

Justine,

It took me about 7 weeks to see a significant difference. I finally saw somewhat normal stools at that time. Of course I still keep getting glutened somehow but at least I am healthier to start (diagnosed in May of 07). This is not an easy process but you can do it! This board will be very helpful in getting you through it. Good luck!

Hi,

I have been gluten-free for 4 days now and was just wondering if anyone new how long it would take for the Intestines to heal? My Dr. didn't really say much to me rather, is sending me to a dietician........ He did say to see in though is about 8 weeks. What is the standard follow up procedure for celiacs? How often do they do the biopsy to see if the Intestines are healed? Any info would be appreciated! Thanks, Justine

Justine,

I am 26 and was just diagnosed in May. It has been very overwhelming for me as well. Sometimes (especially when I have ingested gluten) I feel like I don't even want to continue living if this is what it will be like. I have learned that Celiac Disease can cause depression and when I have been able to be gluten free for awhile I feel much better about the whole thing and even laugh at the fact that I was so down about it before. It is definitely not easy though and you just have to take it one step at a time. Just today I finally bought new pans and utensils for cooking. Before then I didn't believe it was necessary. It's hard to believe that we are that sensitive, but when you continually get glutened for no reason (seemingly) you finally start listening to those around you. I wish you the best. It's not easy, but it's doable.

Is there anyone out there that can maybe share their story with me? Any encouraging words, tips or advice? I would really appreciated it I am scared this is going to be eventually fatal for me! THANKS SO MUCH, Justine

I know what you mean. I have been trying to be gluten free since late April as well and it is very frustrating. I went on a business trip and got mildly glutened and just got home and was glutened again. I don't understand it. I bought all new pots, pans and utensils today. What a pain. I'm so tired of this. I'm waiting to wake up from this bad dream.

i've been doing all I can to stay gluten free. WHY is this so freakin' hard?! This is NOT working for me. I just want to live and be healthy...

Yep. I constantly had bruises on my legs for an entire year before being diagnosed. I'm finally starting to have fewer bruises though I still have one or two that I don't remember getting.

Is easy bruising a symptom of gluten intolerance? Did anyone else have this problem?

I have a very rare blood type, AB-

so if any one out there is Rh-Neg, please RSVP! I want to see if there is a connection.....

That's a good question. I don't know if this is creative recall or if I read it somewhere, but I thought I remembered someone telling me to be sure to buy cornstarch that says gluten free on it because it is prone to cross contamination. I do know that most places that produce corn meal or polenta cannot put gluten free on their products due to cross contamination (ie Bob's Red Mill).

Where did you get that information about cornstarch? If a box of cornstarch simply said "cornstarch" as the ingredient, where would the gluten from wrbo be?

That's really interesting. I never really thought about it, but both times in my life that I was really feeling the symptoms were when I was exercising strenuously (and losing weight). Like Bully4U said, it probably has to do with the malabsorption of nutrients and our bodies reacting because we need even more nutrients when we exercise. Also I think when we have symptoms of D then we are already more dehydrated then we should be and exercise will only cause us to need more water. Very interesting post! Thanks!

Emily

Hi all,

I was just diagnosed with celiac disease today, after going to my docter for having acute, severe abdominal cramping that started about an hour after a strenuous tennis match. The cramps lasted for approx an hour, then subsided. I then got them again after a match I played 2 days later, and then the cramps just stayed in mild, chronic form for the next 2 weeks. I feel a little better now. The puzzling thing is that the cramping was triggered by the exercise, but I can find no evidence that Celiac is triggered by exercise. What are your thoughts/Knowledge?

Sandylulu

Thanks so much! I'm really excited to hopefully meet with her.

Pam Cureton is the nutritionist who works with Dr. Fasano in Baltimore. She is FANTASTIC!

- Lauren

I'm going to a business conferernce in a few weeks and I need to speak with both the hotel restaurant manager and the conference caterer. Can anyone give me advice on what questions to ask them? Maybe explain an experience where you wish you had told them something that could have prevented you from getting glutened?

Things I currently plan to tell them:

1. I cannot have any form of Wheat, Rye, Barley and Oats or anything made from these grains (Salad dressings, Soy Sauce, Pasta, etc). I will give them a list of the other names (Malt Barley, Modified Food Starch, Triticum Vulgare, etc.)

2. Please use freshly cleaned pots and utensils when handling my food.

3. Even trace amounts can make me sick.

4. Even some brands of pure corn starch can have gluten in it, they need to say gluten free.

That's all I can think of right now. Any advice on what to say or question would be wonderful! I don't want to sound like a crazy person, but I also don't want to be sick while I'm there. I think I'll see how they respond and if they don't seem to get it I'll just bring all my own food. What a pain!

Wonderful!!! Thank you so much! I'm going to call today!

The nutritionist that works with Dr. Alessio Fasano, who is a leading Celiac expert at the University of Maryland-Baltimore's Celiac Center.

www.celiaccenter.org for info on scheduling an app't.

(My mom heard her speak at a GIG meeting and she was apparently great)

I know what you mean. So far, I think I know more already then the doctors about what I can and can't have! I think it's because the dietician can test for vitamin deficiencies and help you maintain a healthy lifestyle. From what I'm reading a lot of celiacs have problems with obesity, iron, calcium, zinc, fiber intake (more I can't think of) because of the lack of enriched gluten free foods.

Anyway, I'm not sure it's absolutely necessary, but I would like to give it a try. It would be nice to meet with someone and make sure I am eating enough nutrients (and my body is accepting them) and maybe even find out the latest medical news on celiac (of course if I find someone very knowledgeable!).

Just out of curiosity - why do they recommend seeing a dietitian every year? (And I am assuming they mean a celiac-knowledgeable dietitian which can be hard to find!) It seems to me that if you continue reading food labels and calling companies, a dietitian wouldn't have any additional information for you. They may be able to help make sure you're getting proper amounts of nutrients, but that's really something everyone should be doing, not just celiacs.

Does anyone know a good dietician in the Washington, D.C. Metro Area? I'm reading some medical journals on celiac disease and they all seem to say that we should be meeting with a dietician annually. I asked my doctor and they said they didn't know of anyone to refer me to.

Thanks for posting this! I'm very interested as well! I really wish Wal-Mart would make gluten free corn meal. They have so many gluten free items.

Thanks for posting!

In the book "Celiac Disease: A hidden Epidemic" they say that you should be consuming the equivalent of 4 slices of bread a day for 2 months. I hope this helps! Good luck with your diagnosis.

Emily

been told to load up on gluten for two weeks. Is there a consensus on how much gluten I need to eat before the biopsy.