Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here - Hi All!


mackersandlackers

Recommended Posts

mackersandlackers Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

Welcome! We hope to see you around, too!

celiac3270 Collaborator

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

flagbabyds Collaborator

welcome!

hapi2bgf Contributor

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!

castewar Newbie

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.

rattaway Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

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

scudderkidwell Rookie

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

celiac3270 Collaborator
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

rattaway Newbie

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

scudderkidwell Rookie

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!!!!!!! <_<

rattaway Newbie

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.

rattaway Newbie

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

Canadian Karen Community Regular

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748

    PatientOne
    Newest Member
    PatientOne
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.