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Member Since 06 May 2010
Offline Last Active Oct 22 2012 01:20 PM

#755701 Sick

Posted by on 11 December 2011 - 08:32 AM

I get nausea and vomiting when glutened - that usually lasts 2 - 4 hours and then I am just wiped out until the next morning. It takes a day or two before I can eat much. Very much like the flu without the fever. Hope you feel better soon and stay away from the poison!!!
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#754134 If You Need A Laugh...

Posted by on 06 December 2011 - 06:08 AM

YES! EXACTLY what I felt when diagnosed. What a great laugh!!!!
And it is even funnier that Pillsbury has the ad in front of the clip. :o
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#752753 I Hate Celiac Disease

Posted by on 01 December 2011 - 06:25 PM

I hear ya Donna! It took a long time to find my new normal and I was all sorts of angry and resentful. Now I am at peace with the whole thing. Of course, as far as problems with Celiac, I've had it easy compared to so many on this forum. I think that if my undiagnosed Celiacs causes future health problems like Diabetes or lymphoma I may cry and be angry at it all over again. Baby steps I guess...

Hugs to you Donna. This place is full of people that know and feel your frustration.
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#750579 So How Was Thanksgiving?

Posted by on 25 November 2011 - 04:59 AM

I am so glad you had a great Thanksgiving! We did, too. We went to lunch at cousin's house (mom's side) and dinner at aunt's house (dad's side) and my daughter and I did not get sick! Hooray!! AND the best part - we could eat good food WE prepared and brought and weren't forced to eat the dry tasteless turkey that my aunt always makes. I actually think my husband and other daughter were jealous of OUR food! HA! :lol:
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#749449 Fast Food

Posted by on 21 November 2011 - 07:16 AM

McDonald's says on their website that the French Fries contain wheat - they use natural beef flavoring that contains wheat starches)
http://nutrition.mcd...edientslist.pdf (scroll a ways down)

We eat happily at Wendy's (chili and baked potatoes and french fries but only if cooked in dedicated fryer -ask)
**I just checked Wendy's site and french fries are no longer listed as Gluten Free! Well, see - it is good to check before you head out. Thanks to someone earlier who posted that!

Chick-fil-a has grilled chicken patty and their french fries are gluten free. Their BBQ sauce is gluten-free.
Five Guys - hamburger w/no bun and french fries

That's what we survive on if we are traveling and I'm not prepared. BUT, I always travel with snacks. One time we were traveling through rural areas and there were NO places to eat but McD's and Burger King. Ugh! So, so bad to have nothing to eat and your daughter and you are starving. I think we ended up going to conv. store and getting a banana.

ALWAYS have snacks in car, purse, bookbag!

I've also created a little book of fast food places and what is safe to eat there. I update it every month or two, print out a new list and carry it with me. Just in case. We don't frequent fast food alot because honestly it isn't good for anybody's body, but it is nice to know what is safe in a pinch. I just go to company's websites and they have everything listed usually.
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#747829 Depressed

Posted by on 15 November 2011 - 01:03 PM

My word Donna! You need a hug. You are still new to gluten free and it is a huge lifestyle change. It took me a good year and a half to be emotionally ok (although I did have a mini-break down the other night because I felt abnormal and different - I HATE pity and I get alot of it from family! Grrrr!).
If I were you, if you have a WHole Foods near you - go get one of their Gluten Free Bakehouse Cupcakes. They come in chocolate or vanilla. They come in the freezer section in a four-pack. Take them home and eat one. It will lift your spirits. I am sorry I have no better, healthier ideas. I just wanted to make you smile. You have been through alot and the journey hasn't been easy - I am sorry for that.
But don't think nobody cares - this forum is FULL of people who know exactly what you are going through. When I was feeling down I would spend hours on this site reading other's people's stories.
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#747826 15 Months Gluten Free - Still Having Problems

Posted by on 15 November 2011 - 12:53 PM

My next door neighbor has been having issues when she eats eggs - her throat closes up and she vomits. Then she is fine. But every time she gets allergy tested her results say she is not allergic to eggs. Allergy testing can be wrong. The only way to see if you react to soy, dairy or other grains is to eliminate them for a while and then add one back in and see how it goes.
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#745497 Gluten-Free But You Can Still Have A Serious Problem To Still Fix

Posted by on 07 November 2011 - 01:03 PM

I am also wondering is there any other conditions that can cause villi damage?

I have heard corn and soy can cause problems to villi:
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#745483 Weird Findings On Ct

Posted by on 07 November 2011 - 12:14 PM

I frequently get CTs of abdomen as a follow up for cancer. My scans often show weird findings such as transient intussusception and fluid in my jejunum. Did anyone else present with these kind if findings? I still find it quite funny that even with these odd findings and the visual appearance of my small intestine I still had to diagnose myself

I was diagnosed with lymphoma based on bloodwork and CT of abdomen. Everything pointed to that except the biopsy of lymph nodes. It turned out I had Celiacs but the doctors were convinced I had lymphoma some where. They tested and poked and prodded everywhere in my body. They just couldn't believe swollen mesenteric lymph nodes, swelling in my illeum and jejunum and fluid in my pelvic cavity was all caused by just Celiacs. I even had a mass in my colon they couldn't identify. Subsequent CTs have shown nodes shrinking and fluid gone and that mass is "missing"! :-)
Everyone's body reacts differently to gluten, that is for sure.

Are you finding the gluten free diet helping with remission?
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#740796 Wedding Shower Problem

Posted by on 22 October 2011 - 04:42 AM

I am sorry your nephew hurt your feeling so. That is the saddest part. Let's blame that on wedding nerves and we all have NO idea what his future bride said to him about your message. She might have portrayed the message you left in a less-than-flattering light and he reacted badly to that. I am sorry.

If you know the name of the restaurant call ahead and explain your situation, that you are part of the shower luncheon and would like to know about the menu and if a person with Celiac Disease can safely eat it. Ask perhaps if they can prepare yours without the gluten without any extra trouble. No need to say anything to your nephew or his fiancee. If the restaurant can't help then follow other's advice and eat before you go, have a glass of wine and help the young couple celebrate.

So much of our culture's events revolve around food - our birthday parties, showers, neighborhood get-togethers, even holidays are all centered around food. This is normal, but when you are Celiac, your normal changes - we just have to find it. Celiacs have to focus more on the celebrating than on the food.

Let us know how it turns out.
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#740795 Purposely Glutened

Posted by on 22 October 2011 - 04:32 AM

I cheated on purpose because I didn't believe I had Celiac. It was 9 months after being totally gluten free. I never had any gi symptoms before diagnosis and wasn't sure if I would have them afterwards. Because I was initially diagnosed with lymphoma and then changed to Celiac I was a nervous wreck that I had silent Celiac and would never know if gluten was sneaking in somehow and then that would lead to real lymphoma in the future. I wanted to see how I reacted to gluten so I would know when I was glutened. Does that make sense? So, I made a nice Pillsbury Grand Cinnamon Roll and ate it. I was ready for anything so when I was vomiting 2 hours later it wasn't a big surprise. But now I know. It was confirmed for me. Stupid to some, yes. But for me at that point it was essential to my mental health and it helped me deal with my diagnosis - yes, I really have a reaction to gluten.

I have NEVER done that again, but I have had accidental glutens by well-meaning friends and family and the reaction is the same.

So, you ate your cookies and donuts and felt sick - don't do it again, ok? ;) Not worth opening up your immune system to a thousand other problems. We are just learning how to deal with celiac disease - imagine having other auto-immune diseases or diabetes or even cancer! Keep healthy; avoid gluten.

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#740294 Completely Panicking

Posted by on 20 October 2011 - 09:33 AM

When I went to the doctor in the beginning for swollen feet they did a CAT scan and bloodwork. One day later they told me I had lymphoma.
I was sent to an oncologist - she told me what type of chemo I would be on, gave me website to get a wig because my hair was going to fall out,
and scheduled me for surgery (the lymph nodes that were very swollen were in my abdomen). I specifically asked this oncologist if they should run
a Celiac Panel because of the way my bloodwork was reading. No, she said, it is lymphoma. Needless to say my family was freaking out a bit.
I decided to get a second opinion from another oncologist, thinking I couldn't have it. He ran a Celiac test for me and it was positive. They still
performed the surgery to double check the nodes with a biopsy. I still swallowed a pill-camera to check for lymphoma or cancer anywhere. I still
had follow up CAT scans every month for a while to check the lymph nodes. After 6 months they decreased to a normal size. I gained back the weight
I had lost (from a size 2 to a size 6) but it took a while.

I said all that to say this: it takes a while for your body to heal and get back on track. The doctors thought for sure I had lymphoma - all the tests were
pointing that way. Even the biopsies were non-specific. But the gluten free diet has worked. For a while every freaking cramp would cause a bit of panic.
I still worry a bit that I am more likely to have lymphoma in the future, but those days are less and less the farther I get away from that awful time.
I feel your pain and know where you are. Your life revolves around tests and diagnosis. But dedicate your energy to learning and living gluten free and
I am sure you will heal. It takes time.

Take care,
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#677056 Ok, A Bit Stupid

Posted by on 21 February 2011 - 06:07 AM

Her problem and mine is that she did not have any symptoms of celiac, she has always been an anxiety child, thats her asperger, she has always been skinny and no stomick problems. She has been pale and has lost weight and been very miserable sincelast summer, the doctors took blod test and found outthat she had Graves disease, and also found out that she could have gluten intolerance.

She was so sick that they could not examine that in hospital for more than month or until her thyorid hormone has got lower, dont know how to say that in english, but do the exam through her stomach, you know... :huh: to be sure it was celiac. It is celiac and a bad one they say.

Yes, the problem is/was that she did not have any symptoms, or she had them mixed with other symtoms becouse of her thyorid or her asperger, its tripple for her, all three has anxiety, swings in mood and other things and she was almost dying from nutritional deficiency, she was eating all the time and all that did was sho lost weight. The body was screaming for nutrition, and the celiac was in the way and the little she got her hypothyorid burned that out. So I realy dont know, if she is sick by gluten or by something else, well its a world I will probably get used to, I just realy feel sorry for my little girl :(

I was the same exact way - no stomach problems, just losing weight and literally starving myself even though I was eating all the time. When they said it was Celiac I was doubtful, but went on the diet anyway. Within a few months I started gaining weight, my one sure sign that the gluten free diet was doing something right. (My intestines were healing, but I couldn't see that). It will take some time, but her body will start to heal and she will gain weight and her body will absorb all those nutrients it has been lacking for so long.

You have so much to worry about and I am sorry for that. But it sounds like you are the perfect mother for her and are doing whatever you can to help her get better. Good luck to both of you!

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#674882 So Far.......so....weird?

Posted by on 13 February 2011 - 09:15 AM

WOW! What a wonderful post - if this is truly what is causing your poor health and you get organized to educate doctors PLEASE sign me up! I had an oncologist that was convinced I had lymphoma, scared the bejezzus out of me and my family. I even asked her if it could be Celiacs, asked her to run the tests TWICE! She refused, she was so sure I had cancer and started the chemo process. I went to another oncologist who listened to me and it turned out to be Celiacs!! I would love to help educate the medical community. My new GI doctor even said that most of his Celiac patients know more about it than he does, just the nature of people with a gluten sensitivity I suppose!
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#665113 Anyone Diagnosed With Behcet Disease As Well? Lymphoma

Posted by on 03 January 2011 - 04:35 PM

I'm sorry you are going through all this stress. 8 months ago (seems like yesterday) the doctors told me I had lymphoma and sent me off to surgery (abdominal lymph nodes) and prepped me for chemo. Sure my blood work was wacky - but show me a Celiac's who's isn't! I questioned the doctors, sought a second opinion and they sent me to be tested for Celiacs. Low and behold, that was causing all my problems. 6 months gluten free and my lymph nodes are back to normal as well as blood counts and malnutrition. No wonder I lost 25 lbs - it wasn't cancer, just celiac! But the month I 'lived' with cancer was pure he**. Waiting is the worst. I hope you had a good holiday and have found out something by now. I remember waiting 2 weeks for Mayo to biopsy my slides - we thought they lost them! :blink:
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