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This Is All So Totally New To Me..
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Hey everyone! I was diagnosed with Celiac a few weeks ago based on a small intestine biopsy, but still have to have my bloodwork (thats tomorrow) I was told to eat 'normal' until then, but I just can't keep eating whats making me so sick! So this past week I said no more, I'm doing everything in my power to avoid all gluten!! Though I imagine I've eaten it by accident several times not realizing because I still get violent stomach pains, nausea etc. All my life I've had what my dr calls "gut problems" and its been shrugged off as IBS, I have more problems with constipation than diarrhea, but now that I sit back and reflect on the past so much fits together. Its like I'm able to put these pieces together and have an answer that actually makes sense! So here's my questions

Do you really have to watch what shampoo etc you use? I noticed mine has Hydrogenated wheat in it, and I've alwyas been a 'shedder' my whole life. The hubs says I'm being crazy

Cross Contamination- If you aren't a severe celiac, do you still have to worry as much about it? My dr said I have latent celiac disease which isn't as bad as most but he said would get bad if I don't change things now

Lactose- about 2 weeks into my sudden onset of celiac symptoms I developed a lactose intolerence as well, I read this can get better once you get healed, is this true? God knows if I can't have a brownie I NEED some ice cream lol

Am I really going to feel BETTER??? I have no energy, migraines all the time, 24/7 upset stomach, bloating/gas, irratibility, acne (and I'm 30 which is no fun!) I've just thought I was doomed to feel like crap my whole life and had no idea why.

How do you manage with a gluten lovin family? I have 5 kids, 1 with autism and 1 with aspergers (diet change may help them) I also have 1 with ADHD and Bipolar, he's 9 and very small for his age, has had GI issues his whole life, I think he needs tested as well for celiac disease. But my hubs says sure he'll change as much as possible but he aint givin up Cheeseburgers and pizza... its kinda heartbreaking because I could use a good cheeseburger these days!! I could eat a bunless one though :)

How do you manage when you are constantly on the go? with 5 kids I am always on the run, dr appts, school events, etc what fast food places are best to find quick eats on the run? And is Starbucks (latte's) safe??? God I need my coffee lol!!

I'm sure I have tons more questions but these are on my mind. I've read so much on this forum and its been very helpful. I am a member of a few other medical forums that have helped me over the years and now I can help others with my experiences. I can't wait to get to that point with Celiac, for now I am grateful for all you guys can share!

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gluten-free will help your special needs kids in a mighty way! It's hard to get used to but wow what a difference it will make in your life. Welcome!

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Oh and with 4 kids, sports etc.. we are always on the go too. I just have to do more planning than normal and either eat earlier or use the crockpot and eat late with more snacks. I have to be much more conscience at the grocery store. Easy on the go snacks are SO easy but full of crap. Find a fruit or veggie they love and keep that on hand. Easier than fighting them over something they don't

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I have actually tried several times to get my autistic son on a gluten-free diet but he rebels :( He refuses to eat anything except Pizza and Pop Tarts. And when I buck up and say NO, he will throw tantrums and fight me tooth and nail, its so incredibly hard! I'm going to be the guinea pig finding what gluten-free foods taste good, get it down for myself and then slowly throw the whole family into it. I just wish gluten-free stuff wasn't so expensive! We've been having lots of chicken, rice and veggies lately lol :)

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i had to change my beauty products. i got cc from hydro. wheat in my hand lotion. i bet you anything keeping gluten out of your kiddos diets will help tremendously. my friend's son has done a complete turn around (age 7). its crazy how it effects your body physically, emotionally and mentally.

starbucks is safe ... make sure you tell them you are allergic to wheat. i haven't had any problems with my coffee drinks there.

on the go ... larabars, nuts, homemade trail mix with nuts, raisins, m&m's so you don't get any wheat or oats, apples or other fruit. i always take an insulated lunch bag (target has cute ones!). i fill it with a small container of natural peanut butter for caramel rice cakes, carrot sticks, sargento's low fat cheese sticks, the above mentioned. just depends on where i'm heading.

you will slowly figure it all out. (this site is filled with support and tips!) avoiding all traces of gluten (ingested or applied outward) will truly be life changing. different stages of relief will begin and you (and your hubs) will find all of the "craziness" will be worth it. i'm the only one in our family (for now) but they see the difference in me and at all costs do their best to help keep me gluten free. even as young as they are they try really hard to be careful. and my husband rocks. he's the best. :)

best wishes and welcome! :)

p.s. chocolate chex. OMG. its the best. udi bread is fantastic for sandwiches too.

Edited by bluebonnet
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on the go ... larabars, nuts, homemade trail mix with nuts, raisins, m&m's so you don't get any wheat or oats, apples or other fruit. i always take an insulated lunch bag (target has cute ones!). i fill it with a small container of natural peanut butter for caramel rice cakes, carrot sticks, sargento's low fat cheese sticks, the above mentioned. just depends on where i'm heading.

I bought some of the Larabars.. <gag> lol... Is there a flavor thats better than peanut butter?? Are reese cups ok? I read the ingredients and they look ok but I wanted to double check. And I read somewhere that caramel coloring was bad? Is this true? Baked Lays appear gluten-free. I think my big shocker is so much looks safe I find myself thinking it can't possibly really be ok lol

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I bought some of the Larabars.. <gag> lol... Is there a flavor thats better than peanut butter??

I've never tried peanut butter. I love the pistachio one and key lime pie. Not so keen on the cherry one.

It's overwhelming at first but things definitely will get better for you. Good luck!

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IMO, the best way to feel better faster is to be super strict with your diet to start. There are many mainstream processed foods (like potato chips) that don't have gluten ingredients added, but may be processed on the same lines as gluten containing products. Some people don't have any problems with these products and some people are really sensitive and will have reactions from even the smallest amount of cross contamination. Many people also find that additional intolerances crop up once they go gluten free. If you are eating lots of processed foods and you don't start feeling better it's going to be really hard to tell if you are reacting to cross contamination or you have an intolerance to something in the gluten-free products. To start out try to do whole foods as much as possible: meats, cooked veggies, fruits, rice, potatoes, etc. It does take a lot of additional prep work and planning if you are on the go a lot. I got a little cooler/lunch bag at target that looks like a purse and when I have to be gone all day I pack some food in it with a frozen water bottle as an ice pack. I pack mostly raw veggies (carrots, cucucumbers, etc) and fruit like apple slices and bananas. But sometimes I also add rice cakes with peanut butter and jelly, hard boiled eggs, grilled chicken strips, potato salad or yogurt with berries. For when you have to be gone all day and want a meal to be ready when you get home, there are many crock-pot meals that are gluten free. Do a search and you will even find a blog by someone who is gluten free and all her crockpot meals are gluten free.

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Okay, let's see!

Q1. Do you really have to watch what shampoo etc you use?

A: Yup, I would. While some celiacs report issues with skin contact, I'd say the biggest reason, for myself, has been because every once in a while, I get the suds on my lips/mouth, which means enough can be swallowed to cause a gluten reaction. Same pretty much goes for lipstick, chapstick, and lotion/sunscreen on your hands (if you ever put your fingers in your mouth).

Q2. Cross Contamination- If you aren't a severe celiac, do you still have to worry as much about it?

A: Yup. Admittedly, some celiacs react to less gluten than others, but even people who have mild reactions will react to very small amounts. Darn it.

Q3. Lactose- about 2 weeks into my sudden onset of celiac symptoms I developed a lactose intolerence as well, I read this can get better once you get healed, is this true?

A: Yeah. Not for everyone, but a lot of people. My son had this. He's had issues with dairy for years (he's 8 now), and 2 months after going gluten free, suddenly it didn't bother his tummy anymore. Of course, then he started having other issues with it, but the tummy part healed up, LOL.

Q4. Am I really going to feel BETTER??? I have no energy, migraines all the time, 24/7 upset stomach, bloating/gas, irratibility, acne (and I'm 30 which is no fun!) I've just thought I was doomed to feel like crap my whole life and had no idea why.

A: Most hopefully, yes! The things that improved for me: depression, memory problems, joint pain, getting sick often, healing slowly, anger and irritability issues, and a host of others. Actually, I hadn't thought about it 'til reading this post, but my acne's been much better too!

Q5. How do you manage with a gluten lovin family? I have 5 kids, 1 with autism and 1 with aspergers (diet change may help them) I also have 1 with ADHD and Bipolar, he's 9 and very small for his age, has had GI issues his whole life, I think he needs tested as well for celiac disease.

A: First...I would seriously consider testing all your kids for celiac disease, pester your parents and any siblings to do the same. Out of that population (1 degree of separation from a celiac), 1 in 22 will have the disease. Silent celiacs (no symptoms) is the biggest growing population of celiacs, too. My father had celiacs, but we never tested anyone else. Then I was diagnosed by accident, and I pestered. My brother and daughter came back positive, even though my daughter had NO symptoms. My son, who had tons of symptoms, tested negative, but I took him off gluten anyway, and his symptoms improved significantl, so I'm assuming either he's intolerant or was a false negative. Also, for your kids? If they got your gene, there is a very good chance the disease will trigger sometime in their lifetimes, and that it may not have any symptoms for a few years, so having them tested every few years is considered a good policy, from what I've read.

My hubby is not celiac positive, and didn't want to give up gluten either, but after a few weeks of trying to keep the house gluten AND gluten free, he has ended up getting his gluten outside the house and sucking it up in house. Otherwise, we ended up feeling a bit too paranoid with the kids and trying to avoid cross-contamination and such.

Q6. How do you manage when you are constantly on the go? with 5 kids I am always on the run, dr appts, school events, etc what fast food places are best to find quick eats on the run? And is Starbucks (latte's) safe??? God I need my coffee lol!!

A: I pretty much have a day to cook, just for food to take with us. We have big, honkin' insulated lunch bags for everyone now. If you have a large budget, you can go to a grocery story and get a lot of premade gluten free stuff, but we haven't been able to afford that. It's very tricky to find safe places to eat out, and usually the ones that have gluten free things are more expensive. If you have In n' Out Restaurant where you are, their fries are gluten free; just mention you have allergies/issues with gluten and that you need the server to have new gloves touching their fries and to not have the fries touch anything else. They have a button for something like that, believe it or not. McDonald's ice cream in a cup was gluten free, last I checked. Uh....That's all I know of in the fast food realm, sadly. Starbucks has started carrying 'Kind' bars, which are gluten free. Nut and fruit bars, essentially. Some coffee there is gluten free, and some isn't. I believe if you google starbucks coffee and gluten free, they have some pretty detailed info. pop up. :-)

Good luck with your new start - I hope you start feeling better ASAP!! :)

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Thank you so much Shauna for the very detailed reply! :)

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    • Welcome!   I am confused.  Did you have a negative celiac blood test or a negative biopsy (taken via endoscopy)?
    • In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them. Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling. Hang in there it will get better.
    • You are sick.  Depression and anxiety are symtoms of celiac disease (and many other illnesses).  It is hard now to look forward and imagine a great life, but it is possible.  I think you are already in the thick of the grieving process right now.  Reaching out to this forum can be very healing emotional (it is not just all common sense advice about gluten-free food!).  I did not say not to exercise, but to do it gently.  This is not the time to train for a marathon or triathlon!   The SCD Lifestyle site....it is all about the money.  Seriously.  They are selling a book. 
    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
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