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Gluten=bad

Confused

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Hi, I was just diagnosed with Celiac disease last month. My doctor did a blood test, including the gene test. The results came back positive for Celiac disease and I was told to begin eating gluten free. I had a rash on my back that I can only assume was DH and after about a week of eating gluten-free, it has cleared up significantly. My stomach issues have gotten better too. However, there are two things that are really bothering me:

1)Some people have told me that the only true way to diagnose the disease is to have a intestinal biopsy done. My doctor never mentioned this. I've already gone gluten-free, so why should I put myself through this?

2)I was doing really good with the whole gluten-free diet, but then I caved last night and ate a little debbie and a twinkie (my weakness). Within about an hour I got extremely tired, not to mention the itching that is still happening today. So I'm guessing that eating gluten is indeed the cause of my symptoms.

Also, I'm going to a family members bridal shower tonight and know that they will be serving sandwiches, cake, meatballs, and those little smoked sausage things. The last item on the list is probably the only thing I will be able to eat. I don't want to have to explain things to them as I'm afraid they won't understand. Do I just eat the food and suffer later or do I not eat and seem rude?

Thanks for any advice you can give,

Stephanie


Stepmomof 2

Married for 5 years

Dx with PCOS February '07

Dx with Celicac disease February '08

Gluten-free since 02-24-08

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1. While a biopsy is considered the most reliable diagnosis, it is not perfect. And you have to be eating gluten. The most reliable test is dietray response. If you feel better on the diet, then why bother? You are absolutely right. I never had a biopsy either.

2. No cheating!!! BAD choice...but I'm sure your body told you that already ;)

3. As for the shower, either talk to the hostess or don't eat. DEFINITELY do not cheat (see above lol). But I would reccomend briefly explaining to her that you have just been diagnosed with an autoimmune disorder and must follow a very strict diet, then ask to read ingerdients (or speak with the caterer or w/e). The reason I reccomend this is because odds are it will come up later, so you might as well just deal with it now. Plus it saves you having to awkwardly explain why you're not eating. You could also offer to bring a safe dish (or even just a fruit or veggie platter). I would call in advance.

Good luck!


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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I wouldn't bother with trying to eat the sausages. A lot of sausages have gluten, most BBQ sauces have gluten, they're likely to get contaminated from crumbs dropping into them. Bring your own food or eat before you go. Eventually you're going to have to explain this to the family so you might as well do it now. If they're the type of people who aren't going to understand and be compassionate, it won't matter when you tell them. If they are the understanding type, then you'll be fine. Approach it from a medical standpoint, not a "I'm refusing to eat your food". It's an adjustment for family members, too, so understand that even if they are the compassionate type, it may take a while for them to get it.

And I wouldn't bother with the biopsy. You've got a great doc who has diagnosed you based on blood tests. He's a keeper! There's no point in doing a biopsy to re-prove you have celiac. And if the results did come back negative, would you go back to eating gluten? Probably not.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Don't feel bad about being confused. I think we all had to deal with that. Is the shower a pot luck or is it catered? If it's a pot luck, I would suggest stopping by a Whole Foods or Shaws and get yourself a little something, or make a nice salad you know you can eat sans croutons and get some Ken's Steakhouse Ranch dressing (no gluten!), and maybe a little sweet treat for yourself. They're surely going to have a cake and very glutinous things there...I agree with everyone else, stay away! it's not worth it to feel sick or itchy!!!

In fact, I just went to my sister's bridal shower last weekend, and I offered to make some dishes so that I knew I could eat things, and I made sure spoons weren't shared between dishes, and only the gluten free dishes were kept next to each other. I made a gluten free mac and cheese, and a gluten free spinnach and mushroom quiche with a gluten free pie crust. they came out great! so that's what I ate, and my mom made a flourless chocolate torte. Seriously, I want to open a restaurant. :)

It's really not that bad, having to eat gluten free, once you realize how much better you feel doing it. but I understand that those social functions can be a hassle sometimes. You'll get the feel for it after a while, and know what your limits are as far as how comfortable you are bringing your own food. please, I bring my own tortilla chips to mexican places! And yes, family and friends can be great, but they can also be very uncooperative at first when they don't understand. everyone will get past it, but you have to be open and honest about your condition and take care of yourself!

good luck!!! let us know how it goes!


superbeansprout

Boston, MA

Celiac since February 2007

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1. Unless you feel the need to have the "true medical standard," I would not bother. This "gold standard" can be inaccurate. I have had TWO gastro's tell me this.

My bloodwork was positive

My Aunt has damaged intestines/Celiac diagnosis

My mother had colon cancer in her 40's

My symptoms were classic Celiac

And I responded "amazingly" well to the gluten-free diet (no more hospital trips for intestinal issues)

The catch? My biopsy came back negative. Both of my GI's said that it often depended on where they biopsied.

I have been told by some in the community that with a neg. biopsy, I don't have Celiac.

Well, I'm not hung up on labels. Pardon my language, but screw what they think.

Whether one wants to call it Celiac, gluten intolerance, or Poop and Gas Disorder...I could care less, now that I know how to fix it ;)

2. You know not to cheat, but I confessed earlier this week that I did. Most of us have our moments of weakness. Don't beat yourself up over it. Keep on goin' You'll get the hang of it. :)

3. You may want to stuff a baggie of gluten-free appetizers in your purse to eat at the shower, and eat dinner before you go.

Best of luck and welcome to the forums! B) -Julie


Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"

(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."

(Garth Brooks).

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Whatever you do, don't cheat at the party. It's really not worth it, and you'll definitely regret it afterward. The momentary comfort of eating what everyone else is eating doesn't compare with the days of discomfort you'll have if you don't stick with your diet. I agree with everyone else -- either ask if you can bring a dish (or two), or eat before you go and stash some safe snacks in your pocket, purse, whatever. This is something you will have to get used to for the long haul, so you might as well start practicing not cheating. Have fun at the party, and feel good that you're solving a problem many people don't ever get lucky enough to solve!

Ellen

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Well, as much as I hate to admit it, I cheated! I even brought my own snacks!!! I just couldn't help myself! Then today, I made my husband a frozen pizza and he said that he wasn't going to eat all of it. It was lunch time, I was hungry, and well one thing led to another and you get the picture :( Honestly though, I think I am done with gluten no matter how hard it might be. I had to take a nap because of the fatigue, the DH has spread to my shoulders, and I've had several bouts of diarrhea (sorry if TMI). So, tonight for supper we went to Outback and I ate off their gluten-free menu. Can you say heaven? I had a salad minus croutons, the Alice Springs chicken, and the flour less brownie for dessert, yummy! If only I could cook like that :P Anyways, I feel really bad asking for advice and then totally ignoring it. I'm just going to have to set my mind that eating gluten-free is not a choice it's required! My husband and I have been dealing with infertility issues for the past four years. We are currently taking a break in order to give my body time to heal and for me to lose some weight. It won't do any good for me to keep sabotaging myself. I have some questions though, if you don't mind, and I promise to follow the advice this time.

1) I miss just being able to make a sandwich the most. I tried the gluten-free bread at Whole Foods, but didn't like it at all. Is there a gluten-free bread out their that tastes decent and doesn't come frozen or have to be toasted?

2) Are there any gluten-free crackers that are comparable to Ritz?

3) What about good cookies or snack bars/cakes? Anything decent?

4) I recently discovered that my foundation has wheat protein in it, now I know why my face is so itchy. I clicked on a link on this site for gluten-free cosmetics and they were rather pricey IMO. What do you ladies use?

Thanks for any help you can offer!

~Stephanie


Stepmomof 2

Married for 5 years

Dx with PCOS February '07

Dx with Celicac disease February '08

Gluten-free since 02-24-08

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Hey Stephanie,

Regarding #3 on your list:

1. It's cheaper to buy gluten free main-stream products when possible (i.e. candy bars and candy and ice cream...of course read the labels).

2. There are some gluten-free sweet products by Kinnikinnick and other companies that are good (cookies, etc.), but they will cost more.

3. The best cakes, etc. I've found come from gluten-free cake mixes or those that are homemade. It's the cheapest way to go and the closest taste to the "real thing."

Hope this helps... :)

-Julie


Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"

(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."

(Garth Brooks).

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Thanks, that does help! I'm happy to say that I have eaten gluten-free all day and plan on sticking to it no matter how tempting things may be. After the way I felt yesterday and the day before, there is no excuse for me to eat gluten.


Stepmomof 2

Married for 5 years

Dx with PCOS February '07

Dx with Celicac disease February '08

Gluten-free since 02-24-08

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