Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New Here - Hi All!
0

15 posts in this topic

We are new to this forum - found it through some of the members on UKparents.

Neil, my partner has celiac disease and we have found the last 4 years a bit of a 'mare'! Even his parents do not understand the illness and at family parties never cater for him!

Eating out can be a problem or expensive!

Hope to see you all around! :D

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome! We hope to see you around, too!

0

Share this post


Link to post
Share on other sites

I don't like to eat out with celiac disease either.....too bad that is own parents don't help cater to his dietary needs.... :( ........welcome!

-celiac3270

0

Share this post


Link to post
Share on other sites

welcome!

0

Share this post


Link to post
Share on other sites

Welcome to the club.

My parents and family are supportive in that they ask how I am doing and badger me about my weight loss or gain, but they do not cater anything to me or my diet. It's a fend for yourself diet. Luckily they live far away and don't visit that often. I love them to death and would love to have them around, but they don't make any effort to accomodate my cross contamination issues when they stay at my house for a visit, which makes it hard for me.

Anyway, I have found that this diet really shows you who the people are who love you! My family (hubby and kiddo) & I have local friends who are fantastic about this diet. My three year old knows what foods Mommy can or cannot touch or eat. If a three year old can handle the diet anyone can! The family friends have learned to cook gluten-free meals so I can still come to their house for dinner. We go out to eat and for ice cream and always it is a place that I can eat at safely. They insist on a gluten-free safe place even when I say "Let's go to __ (no gluten-free food) and I'll just bring something or skip".

Although this diet can be hard on you and your immediate family, look around at the friends and family who are interested in learning and helping.

I hope your family gets more supportive over the years!

0

Share this post


Link to post
Share on other sites




Hi, I'm a new Celiac too, what a shock, I've never heard of this diease before

and I love my pasta and batter fried fish. My family are trying to get the hang of

this, as I am, but they don't understand how serious it is.... that I can't have anything

with gluten in it, or that I can't come off the diet for a special occasion then get back on

it the next day. I guess they honestly believe that this is a DIET and not a life-style

change. Anyway I've been reading some past notes and know I have a long way to

go before this becomes normal. I'm going to stick with it because I feel soooo much

better and I never want to get back in the shape I was in 2 months ago.

I'd like to hear from you, This is also a first for me,(posting a note) I don't even know if

I'm doing it right.

0

Share this post


Link to post
Share on other sites

Hi Castewar,

It does get easier. Just stick to your guns about the food and eventually friends and family will take you seriously. You may come to find that many of them have gluten intolerance too but just aren't ready to admit it. They all will be watching you closely to see how committed you are to the diet and if you are serious about getting better. Misery loves company you know? Once they see how serious you are, you may find that they begin to ask questions about symptoms and find they suffer from some of them. You will be their guide into the wonderful world of gluten-free eating. I love helping other gluten sufferers find a reason for their pain and get a chance to help in a way. I was raised in TX and boy do I know the feeling of giving up batter fried anything. I have however learned to batter fry gluten-free. Try rolling fish & chicken in buttermilk and then into rice flour or cornmeal(gluten-free of course) and add gluten-free seasonings to taste and then fry in a deepfryer. We make catfish and chicken nuggets this way.

:P Best wishes,

Rian

0

Share this post


Link to post
Share on other sites

Hello! Welcome and I hope you stay. I know how the family thing can go. My relatives only cater when we are in small groups. . .like 3 or 4. . .but only with food at a local store- chips and candy. In big groups they don't seem to care but say "I guess there is nothing here for you, huh?" It' okay though because I don't see them much. Hopefully things will change with his family!

Again, welcome!

Kristina

0

Share this post


Link to post
Share on other sites

Hi There,

This is also the first time I've posted here.

We just figured out about 3 months ago, from a friend, that my husband, from all the stomach distress that he's had through the years, could have celiac disease. She brought a pamphlet with all the info and from all the symptoms they listed, he had most of them. So. we did some research on different flours and foods that he could he eat and it looked pretty bleak. I went through all my cupboards and got rid of all things that contained Gluten. Man, is it expensive when you first get started, plus you have to be a food chemist is understand the labels on foods. But after the first week, it was amazing the change he went through. He's been gluten-free for almost 4 months. He's lost over 35lbs. Luckily, all our friends and family are very supportive. When we visit, we usually pack his own foods. Breads, cereal, condiments, butter, milk (because he is also Lactose Intolerant), which makes it more fun. The bad part of all this is that we're spending 3 times the price on food. Luckily, there's only the 2 of us. I can't imagine feeding a large family gluten-free unless you had to. I don't have a Gluten problem that I know of, but I've lost about 25lbs on this lifestyle change. Hopefully, eating this way, my husband and I have added on an extra 15 or so years to our life span.

Going out to eat is a real challenge and very expensive. No fast food palces for him. Full service is about the only way to go so he can special order his food. Why is it so expensive to eat healthy and take care of yourself???

Well, I've ranted enough. I'm glad I found this forum. May need some advice from the experts out there. Thanks, Wife of a celiac disease, Jean

0

Share this post


Link to post
Share on other sites
The bad part of all this is that we're spending 3 times the price on food. Luckily, there's only the 2 of us. I can't imagine feeding a large family gluten-free unless you had to. I don't have a Gluten problem that I know of, but I've lost about 25lbs on this lifestyle change. Hopefully, eating this way, my husband and I have added on an extra 15 or so years to our life span.

Going out to eat is a real challenge and very expensive. No fast food palces for him. Full service is about the only way to go so he can special order his food. Why is it so expensive to eat healthy and take care of yourself???

Yep....I'm the older of two children in a family of four. I'm the only celiac in my family, so nobody else eats gluten-free, not because the food is horrible or anything, but simply because it is soooo expensive. It is a challenge to eat out. About fast food places, McDonalds fries are gluten-free....cooked in oil that is used only for the fries and hashbrowns. TGI Fridays has a gluten-free menu, as do PF Changs and many other places I can't remember. It is difficult, though, to eat out...nobody gets it....it's rather funny and disturbing at the same time when you ask about gluten and people think you're talking about sugar (glucose).

-celiac3270

0

Share this post


Link to post
Share on other sites

I have had two friends in the last week say something about french fries," You can't have french fries either huh?" I just ask them, " You do realize that french fries are potato not wheat right?" It is like no one realizes just what gluten is or obviously what wheat is. Duh. :D If I get really angry about someones attitude, I just "kill them with kindness. " I try not to let on that their comments bother me. Sometimes I feel like I am speaking to a little child when I try to explain our food allergy to them. Oh well, I know I am healthier and happier since going gluten-free. No amount of fresh baked donuts, french bread, cakes, ect. at the store could make me want to go back to the agony I was in before gluten-free. I have some good recipes if anyone would like some. Just ask. :rolleyes:

Rian

0

Share this post


Link to post
Share on other sites

About fast food places, McDonalds fries are gluten-free....cooked in oil that is used only for the fries and hashbrowns. TGI Fridays has a gluten-free menu, as do PF Changs and many other places I can't remember. It is difficult, though, to eat out...nobody gets it....it's rather funny and disturbing at the same time when you ask about gluten and people think you're talking about sugar (glucose).

Yea, I know what you mean. We've been pretty lucky since we live in a tourist area, and work in a resort town. You have alot of tourist that come through with alot of food allergies, so the waiters and also the chefs have to know alot about all the food allergies or you could get someone very sick and get sued. :o Hopefully, as time goes on and more celiac disease info gets out people in the resturant busness will get more educated on celiac disease and food allergies.

As for McDonalds, we avoid that place. Along with Gluten, my husband also has a problem with oily, greasey and fatty foods. That includes peppers and possibly tomatoes. We're not sure if it's the tomatoes or the spices that you use in spegehetti sauce and also taco sauce, does him in too. I know he can't do cheese, so there goes Italin and Mexican foods. :( Man, this is tough and forget the imitation cheese. YYYUUUUCKKKKK!!!!!!! <_<

0

Share this post


Link to post
Share on other sites

We are sensitive to Hydrogenated oils. I have a hard time with oily foods but I am struggling to let dairy go. I bet I'd lose five to ten pounds in a week if I got off of it though. It does take a lot of time and patience to be gluten-free but it sure is nice to feel good. B)

Rian

I was beginning to wonder if anyone was on this site this afternoon.

0

Share this post


Link to post
Share on other sites

I just posted a reply dealing with our sensitivity to hydrogenated oils but it just disappeared on me. I am having a tough time as a Newbie on this site. I haven't quite got the hang of it yet. I try very hard to avoid hydrogenated oils too because they seem hard for my husband, two girls as well as myself to digest. I wonder if many other celiacs have the same problem. Too many years of damage maybe? <_<

Rian

0

Share this post


Link to post
Share on other sites

What you need to do is print off some articles about Refractory Celiac Disease and show them to Neil's family. Maybe then it might sink in just how serious this disease can be. They have to understand that it is not just an "allergy", gluten is actually "toxic" to a celiac's system. If they realize the importance of strict adherence, they probably would be more understanding.....

Welcome to the board!

Karen

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,144
    • Total Posts
      919,570
  • Topics

  • Posts

    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined