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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

So Fed Up
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23 posts in this topic

Yesterday was my birthday, and my parents insisted on taking me out to a restaurant after I had told them that I'm most likely sensitive to cross-contamination. I felt paranoid during the whole meal, just watching myself for symptoms. My mom has a way of making me feel guilty for being so sensitive and continually asks what she can cook for me. At this point, my diet has become restricted to fruits, vegetables, and seeds (no potatoes or legumes). I'm still unsure about nuts since I had a reaction to almonds this week. I honestly don't want to eat anything cooked in my parents' kitchen because I'm afraid of cross contamination, but my mom acts like it's her duty to cook food for me, and I'd rather she just prepare raw vegetables to avoid the chance of contamination. Anyways, this restaurant had plenty of gluten-free options, but very few that I could eat because I'm sensitive to grains. I ended up getting a salad with cooked pears and beets, and after eating it, I felt tired and had a headache. Then my mom tells me I have to go to a family friend's Bar Mitzvah party and eat the special meal they ordered for me, at a restaurant where I'm sure they won't segregate my food when they cook it. She doesn't seem to believe me when I tell her that cross-contamination is probably an issue for me. I don't know what to do. I'm tired of my parents acting like it's just paranoia, and then my mom seems to act like I'm burdening her with information every time I find a new sensitivity. I'm already stressed about this enough. I'm simply trying to be careful because I know I'm extremely sensitive given the fact that my diet has become so restrictive and my parents make me feel guilty for it. How do you deal with friends and family?

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Something I've had to tell myself over and over is that food should not stress me out. Stress is enough to trigger what feels like a reaction (often psychological for me).

 

If you give your mom the knowledge/understanding of cross contamination, the foods that are safe for you, and buy separate cutting boards/strainers/pots/pans/stirring utensils, she can certainly cook for you. 

 

You should never let celiac get in the way of social events...going out to eat is more about being with the people than it is about the food. Bring something if you're not comfortable eating what they serve.

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There is a recent study showing how some celiacs do not get better on a 'processed gluten free' diet and that contamination is an obstacle in healing.  I believe dilettantsteph just posted it last week in the "super sensitive" forum right here.

 

You might want to show it to your mom so she knows there is scientific evidence backing you up and that it isn't all 'in your head'.

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Yeah, I stopped eating "gluten-free" processed foods about two months ago when I started feeling worse again.

 

Thanks for pointing me towards that article though. I'll definitely show it to my parents.

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I eat before I go and then just have a glass of wine.  What made a difference with my mom is when I said, "I am comfortable with it.  What I need is for you to be comfortable with it."  To the server, I say I already ate, but want to visit with my friends, so I'll just have a glass of wine.  Some extended family members have talked behind my back (is she anorexic?  do we need to to an intervention?), but if it wasn't that it would probably be something else.  It is what it is.

 

We're going on a 3-day trip soon and I will be packing my own food.  I've been surprised how much I can enjoy going to a restaurant without eating.  I can focus on the conversation and relax.  It's also a money saver LOL.  

 

Thanksgiving, Easter, whatever, I bring my own food.  (Christmas is at my house - yay!)

 

Printing out info on cross contamination may help.  That's what I did for my husband.

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Yeah, I stopped eating "gluten-free" processed foods about two months ago when I started feeling worse again.

 

Thanks for pointing me towards that article though. I'll definitely show it to my parents.

 I've been having a problem with "gluten free" processed foods too.... how can they be labeled "gluten-free" if people are still having reactions??! AGH! Yes, SO FED UP TOO

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I have to say a little something about this. I was recently diagnosed and now I have been even sicker then before when cross contamination happen but my mom keeps telling me it's in my head. She thinks its strange that I ate these foods for years and wasnt so sick and now I am. She said she doesn't think this eating glutin free is any safer for me. So Last night she called and I was in bed with a migrane and a bucket throwing up so she asked me why and I told her I think I ate cross contaminated food. She then laughed and said no you probly have bug. So I feel your pain with this and it makes you feel like you are possing problem with others. Horrable

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It is weird.  It is strange how some of us seem to get sensitive to lower levels over time.  The level of sensitivity I have gotten to now is crazy.  Plain and simple.  It is no wonder people doubt it.  Yet, when I manage to avoid gluten sources, I feel great, and I'm not having all those symptoms that I have when I get cc.  Some of us have to be extremely careful about cross contamination and some don't.

 

The reason that food is labeled gluten-free anyway, is that there are a bunch of celiacs out there who can eat this food without reactions.  This food isn't for all of us.  I just wish that there were more education out there so those of us who are super sensitive would know this.  It would also be nice if others could be aware too so that they would stop thinking that we are crazy.  It took me a long time to figure it out and meanwhile, I was terribly sick and not knowing why.

 

It is great that a study has been published about this so that we can show it to our doctors, parents etc. 

I hope you all manage to find good health.

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There are some of us that do not believe you are crazy.  Honestly, I think my reactions are really weird myself.  No wonder my family doesn't believe them.  Over time, I am hoping it will all work out.  One can set up a kitchen nearly anywhere with an electric skillet, crock pot, and a table.  I  feel so much safer not cooking where gluten is cooked.

 

Diana

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I have to say a little something about this. I was recently diagnosed and now I have been even sicker then before when cross contamination happen but my mom keeps telling me it's in my head. She thinks its strange that I ate these foods for years and wasnt so sick and now I am. She said she doesn't think this eating glutin free is any safer for me. So Last night she called and I was in bed with a migrane and a bucket throwing up so she asked me why and I told her I think I ate cross contaminated food. She then laughed and said no you probly have bug. So I feel your pain with this and it makes you feel like you are possing problem with others. Horrable

I am having the same problem. I can't figure out if I'm just eating something wrong, or if it's due to cross contamination. It's very difficult, with all the boxed and processed foods these days, to know what to look for on the label. I had a friend tell me that I should stick to organic food, and if it has more than 5 ingredients in it, to steer clear of it. This has been a difficult change for me, seeing as I don't really cook. I get sick randomly, and I try and think about what I had to eat that day. But sometimes I react and sometimes I don't. Which is why I'm thinking cross contamination. I had ONE piece of licorice, even tho I know I shouldn't eat it. That was the worst night of my life. I didn't realize that migraines/headaches were a reaction to gluten. That makes so much more sense now!

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JJBrigade, Licorice has gluten in it. That's not "cross contamination", ok, that's a direct hit from gluten. Don't eat that! :)

 

A good article about dealing with family/friends who do not seem to "get it" is here

 

http://www.celiac.com/articles/22070/1/Talking-to-Others-About-the-Gluten-Free-Diet-by-Danna-Korn/Page1.html

 

 

here is what I say to someone who gives me any crap about this:

 

"Sorry you do not understand it, but you do not walk in my shoes and I cannot expose myself to illness just to please you". But honestly, all of my family saw how ill I was from celiac and they never say a word.

 

 

I am very sensitive to trace gluten and I suffer symptoms for a week or more after a hit, so I understand all of your concerns.

 

The thing is, I can and do eat out sometimes now that I have 2 years under my belt and my very ravaged gut is healing, and I suspect some of you will do better overall with eating out and maybe having a few packaged, certified gluten-free foods, too---as you heal a bit more.

 

Give it some time. 

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Yesterday was my birthday, and my parents insisted on taking me out to a restaurant after I had told them that I'm most likely sensitive to cross-contamination. I felt paranoid during the whole meal, just watching myself for symptoms. My mom has a way of making me feel guilty for being so sensitive and continually asks what she can cook for me. At this point, my diet has become restricted to fruits, vegetables, and seeds (no potatoes or legumes). I'm still unsure about nuts since I had a reaction to almonds this week. I honestly don't want to eat anything cooked in my parents' kitchen because I'm afraid of cross contamination, but my mom acts like it's her duty to cook food for me, and I'd rather she just prepare raw vegetables to avoid the chance of contamination. Anyways, this restaurant had plenty of gluten-free options, but very few that I could eat because I'm sensitive to grains. I ended up getting a salad with cooked pears and beets, and after eating it, I felt tired and had a headache. Then my mom tells me I have to go to a family friend's Bar Mitzvah party and eat the special meal they ordered for me, at a restaurant where I'm sure they won't segregate my food when they cook it. She doesn't seem to believe me when I tell her that cross-contamination is probably an issue for me. I don't know what to do. I'm tired of my parents acting like it's just paranoia, and then my mom seems to act like I'm burdening her with information every time I find a new sensitivity. I'm already stressed about this enough. I'm simply trying to be careful because I know I'm extremely sensitive given the fact that my diet has become so restrictive and my parents make me feel guilty for it. How do you deal with friends and family?

I feel your pain. Having an on going problem with my Aunt ( my mother died at 60 probably due to undiagnosed Celiac issues) who insists she will only go to this French bakery/restaurant for her birthday lunch. Last time we went I got sick as there was flour in the air and a dusting all around. Frustrated because she couldn't believe flour in the air could make me sick she asked "so when will you out grow this". Doesn't seem to matter how old I get I just never seem to be an adult to family. Gotta love them, that's what family is all about LOL (Ps took her plant shopping for her birthday instead)

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I Have been trying my hardest to stay away from glutin. I have basicaly went to fresh fruit and veggies. Chicken and Steak oh and potatoes but yet still get sick alot and I believe it's cross contamination but not sure because I don't understand it. For instance I made treats for my kids not glutin free and never ate one bit but yet I was sick is it from breathing it, touching it what is cross contamination. HELPPPPPPPPP

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Melissa, I cannot emphasize how important it is that you consider taking the house entirely gluten free for long enough to see if you can heal, and only then add things back in to the household slowly. And definitely do NOT cook with wheat flour for them!

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I know but my husband and children do not understand why they should have to switch to these things when they are fine. They love those little debbie Cakes and junk food lol. Its hadn for them to get it.

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Back to the original poster but this would apply to others posting here: you will have to stand up for yourself and your health. If you do not think you can eat something safely, you don't eat it. You can choose to explain it a few times to close family but ....Don't let them talk you into doing something you know will hurt you. If they can't prepare and eat their gluteny junk food in a way that is safe for you, don't be around them.

Gluten is poison for us. Anyone who wants us to eat gluten/ poison might need to be avoided if you can't put your foot down and make them listen.

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Gluten is poison for us. Anyone who wants us to eat gluten/ poison might need to be avoided if you can't put your foot down and make them listen.

 Agree completely and if you are the Mom of the household, they need you to be healthy.

 

 

These family members who are uncooperative should be made very aware that you have a serious, life-threatening disease (if it is not treated) and the treatment is a strict gluten-free diet.

Period. 

 

These family members  should also be tested as this is hereditary.

 

If you feed your family healthy meals everyone can eat, along with occassional G F treats, no one should complain about the food.

 

All of these meals and snacks listed below are G F, but not any more expensive than meals I prepared before diagnosis.

(this info is in the Newbie 101 thread under the Coping Section)

 

LUNCH and DINNER ideas:

Leftovers from last night's dinner make an easy lunch

Some Progresso soups are gluten-free. Check the label!

Some Pacific and Imagine brand soups. Read the label!

A sandwich with gluten free bread or rolls—UDIs, Rudi's, Glutino Genius, Scharr's and Canyon Bakehouse --all have decent packaged breads, rolls and bagels, but homemade is the way to go.The baking section has many ideas. 

A big salad or an antipasta with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. 

A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay. Homemade is best!

Homemade vegetable minestrone ,chicken soup, stews, black bean or White bean chili (use gluten-free stock--pacific, imagine or make your own from scratch--even better!)

Chicken or bean nachos (can use corn tortillas)

Red beans and rice

grilled burgers and beans (Sweet Baby Ray's BBQ sauce and Bush's Baked Beans are gluten-free)on a bun (Udi's makes hamburger rolls now or you can make your own. CHEBE bread mix makes killer rolls)

almost all mexican food is safe (just no flour tortillas!)

Pasta and sauce w/meatballs (brown rice or corn pasta) 

TINKYADA BRAND penne pasta is delicious! Cook 13 minutes exactly. Trust me!) and use gluten-free breadcrumbs (purchase or just grind some gluten-free bread and season)in your meatballs

Another good pasta is CORN pasta. BiAglut or Sam's Hill are a couple. Cook as directed.

meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind

Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels)

Vegetarian chili--homemade.

I eat a variety of veggies.....whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock.

Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy

Potatoes—roasted, grilled, in a gratin or whipped with milk

Fritattas with veggies and salad

Stuffed peppers—with ground turkey, beef or lamb and rice

ANYTHING GOES!! smile.gif 

ANY recipe you already use can probably be altered--just use gluten-free breadcrumbs or rice/corn pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. 

Snack ideas that are safe and handy 

Cozy Shack Rice Pudding or Tapioca cups (in the dairy section)

All natural applesauce cups

Gluten-free cookies or muffins (Bake them or buy them.) 

Pamela's Baking Mix is versatile and good for cookies, baked goods. There are many options (check the recipe and baking section on the forum)

Bagel with cream cheese and jam or nut butters. Udi's and Glutino bagels are pretty good (frozen section)

Pamela's and King Arthur gluten-free--makes a very good brownie mix too!

Chobani Yogurt or So Delicious coconut milk Yogurts- if you cannot have dairy

Scharr cookies (chocolate-dipped shortbread or the mocha layers--are VERY tasty!)

Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter or almond butter or hummus smeared on

Mary's Gone Crackers, Crunchmaster's or Glutino crackers with cheese or peanut butter

BOAR's Head or Applegate Farms deli--ham, turkey, pepperoni, salami, proscuitto--most all cold cuts and cheeses

Slices of cantaloupe wrapped in proscuitto

Watermelon with crumbled feta cheese

Peanuts, almonds, cashews. (I like Blue Diamond or 

Nutsonline.com has a HUGE gluten-free selection of nuts and flours)

SUNMAID raisins, prunes. Craisins by Ocean Spray. (**some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.)

Smoothies- made with coconut milk, various fruits, yogurt, etc.

Potato chips----like Cape Cod, Kettle Brand, Utz

Indiana Popcorn--comes in all flavors--the kettle corn is delicious

Glutino brand pretzels—they come in all flavors even chocolate -coated

Coconut milk, creamer and ice cream ( So Delicious brand is very good)

Ice Cream, if dairy is not a problem for you. Most Haagen Das flavors are good, for example. READ LABELS!!!

Organic Corn chips w/salsa, hummus, or Guacamole

Sunflower , pumpkin or flaxseeds

Candy—Hershey's kisses or regular size bars, regular size Reese's cups, Snickers, York peppermint patty, Health Bars, Butterfinger and M &Ms plain and peanut. Ghirardelli squares. These were safe--last I read online--but READ LABELS!

Enjoy Life chocolate chips, chunks and Boom Choco Boom bars (free of ALL top 8 allergens)

Make some Chex mix with gluten-free chex cereals

gluten-free Rice Krispies treats (recipes are online)

CHEBE pizza and breadstick mixes—are very good.

Against the Grain and Glutino make some good frozen pizzas.

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Do not despair, hon.  It does get easier, I promise! Soon, it will be the "new normal".

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Well spent hours with dietitian and she does believe I may have alot of food allergies. She has also put me on a high protien and fat diet to put some weight on my bones to. Kind of a little week at times so got to get some strngth back.

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OP, your mom sounds like mine. She believes me that I have an illness, but everytime I see her, she offers me something or suggests something for me to eat. She brings up items that me and her cooked ages ago and froze (gluten free peroggies) that I now don't want to touch, and she doesn't understand it. I just keep telling her no, and I know I will have to do that the rest of my life. But of course that's also part of her personality, whether it's gluten or an article of clothing I try on that I hate and she loves, or job/career suggestions, you name it, if she thinks it will be good for me, she'll take jabs at it until I give in.

I suppose I should be thankful that I don't find it hard to say to eating the gluten though. It's not usually that I'm worried about hurting her feelings and I'm not in regards to gluten, but rather that I know 100% that her opinion in regards to what I can eat isn't valid. 

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I had it for so long before being diagnosed.  I was a mess growing up and untill I finally found out was was the issue. My Dad does not take it serious at all (Even though its HIS side of the family it comes from) mom still makes me feel bad for being so "bad" all those years.  If I eat there or go out, they forget. And then I feel like crap because I am sitting and not eating.  Dealing with people and their "nit getting it" is the hard part for me.  I hate the "Oh so you cant eat bread? " Oh, if that was all it was. *sigh* LOL

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It poses the question, does it not?..if a condition that cannot be seen is dismissed as a person being a hypochondriac, what of heart disease, Crohn's disease, Arthritis and Asthma?  :unsure:

 

I think if/when I encounter a negative reaction I do not think that I would waste my time on getting upset and stressed, at the end of the day it is their problem; that they have to deal with.  We all have enough issues each day with fighting the ‘Gluten Dragon’.  I feel the more you try to explain or make them understand, the more they will dig their heels in and not let it drop.

 

 

I am lucky at the moment as it is early days for me. I have not encountered this heartache. I have only told my Mum who said she knew I had a problem with wheat and milk, and is surprised I have eaten/drunk it for so many years and suffered.  But when I visit her, she will totally forget :rolleyes:  lol.  My work colleagues are great.  They wave biscuits and sandwiches under my nose, but we laugh and I call them bad names, :P  lol.  We have a laugh over it, but bless them they never slip up and put normal milk in my tea :wub: . My 14 year old son totally gets it, and made some pretty good observations and ideas.

 

My heart goes out to you all, but you have this forum to run back to for a quick hug and support.  :)

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