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

Im New!

Guest Clo-Jay

By Guest Clo-Jay
in Coping with Celiac Disease

Recommended Posts

Guest Clo-Jay
Guest Clo-Jay
Posted

hi! wow im glad im not the only one with celiac because it sure does feel like it sometimes.

im 15 and was told i had celiac disease last october after being quite sick for a while, i was very anemic and had liver problems and then i had to have loads of blood tests and i biopsy on my duodenum and then they told me i had celiac disease :(

its hard. i still dont cope with it very well, i miss a lot of foods.

i want to get a book or something, i want some recepies lol

anyway, not quite sure if im doing the right thing here, or if anyone will even see this but thanks if you did!

love

Chloe

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

Celiac.com Sponsor (A8-M):


SunnyDyRain Enthusiast
SunnyDyRain
Posted

Welcome! This website will help you wonderfully! We have lots of "seasoned pros" and then people like me who are finding out the hard way how things are.

This site will give you reciepies and book suggestions! Just keep reading and you will find more than you ever wanted to know about Celiac!

pedro Explorer
pedro
Posted

Welcome hoem. This is the best place to learn, cry and receive support.

For you first steps try to keep everything simple. Fresh vegetables, fresh meat, fish, and then start adding others foods aslong they are gluten free. One member has a great list of products that you can eat. Her name is NoGluGirl. She can post the list for you.

Here you will find so much help and please ask as many questions as you need. This is the place you can feel relax.

Hope you feel better. I know is overwhelming at first, but it will get easier.

Best regards.

Guest j_mommy
Guest j_mommy
Posted

I recommend "Living Gluten Free for Dummies"! It's a good book, easy to read(not boring) and has alot of useful info! I've passed around to my family so they "Get" what celiac disease is!

THere are some awesome recipes here!!!! I've been baking all morning....wasn't in eth mood to eat just bake so I made the "to die for brownies" and choc chip cookies. Taking both to a cookout tonight!

Good Luck!!! Sometimes it gets you down but in the end I'm ok with it b/c I know I feel MUCH better!

DingoGirl Enthusiast
DingoGirl
Posted

Nope, you're not alone, we're all here to help! :) Welcome.

This site it where I learned virtually EVERYTHING the first few weeks. These are the people who live it! Such a great place. Ask any questions you may have. It really does get easier......and J Mommy's recommendation on the book is a good one.

See ya!

Guest KG in FL
Guest KG in FL
Posted
hi! wow im glad im not the only one with celiac because it sure does feel like it sometimes.

im 15 and was told i had celiac disease last october after being quite sick for a while, i was very anemic and had liver problems and then i had to have loads of blood tests and i biopsy on my duodenum and then they told me i had celiac disease :(

its hard. i still dont cope with it very well, i miss a lot of foods.

i want to get a book or something, i want some recepies lol

anyway, not quite sure if im doing the right thing here, or if anyone will even see this but thanks if you did!

love

Chloe

Welcome and you are not alone. I have the celiac in my family but my daughter is 15 and I feel for you at your age in dealing with this. Fifteen is kind of a changing time and you must be sure to keep your willpower with food when out with your friends. I know with my daughter, it's an age where they all want to find friends who are like they are, do the same things, etc. Thier crowd. I hope you have some supportive friends. You will find them if not. It is imperative so that you can stay strong and live your life to the fullest. You can't do everything you want to do if you are weak and sick.

But the good news is... you can do it all- everything you want!! Only one small catch- don't let gluten slip into your food!! On this messege board (you are very smart to find this so soon!) you can find out everything you need to know about what you can and cannot eat. Where the hidden gluten lurks! And how to order at the resturants, which restaurants to go to. How to deal with holidays, birthdays and all that. But really how you are not alone. There are MANY of us out there. Older and younger. Male, female. My son (not celiac) is starting college this fall and if he ends up with celiac (it is hereditary) I already know of students at his college he can hook up with. In a way, it's kind of like our own group or club!

So try and make the best of it although there are and will be some challenges, but do not be afraid to ask for help. You already did here and I know everyone is happy to hear from you and answer anything we can. And most people on this web site know EVERYTHING!!! It's a wealth of knowledge and caring! Any subject you have a question about, I'll bet you can find it here. Or someone will find it for you! And just keep reading this web site so you know you aren't alone, you are not the only one going through this, having to make these changes.

Some products you might have to order on-line, some things not. Fresh stuff is best, but you have probably been told that your whole life!! And now it's time to be healthy!! It's all on this web site. Great information and ideas. Recipes and inspiration when you get a craving you can't control. We've all been there. What you can make or buy to replace all your favorite pasta's and pizza's. Breads and hamburger buns. Crackers and, well, you get the point! So-

Good luck and keep reading and posting!

roo#9 Newbie
roo#9
Posted

Hey Chole,

I am new to this site too. I was diagnosed about 2 years ago and it has not been easy. But I have gotten used to it and we have some good recipes now.

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

Celiac.com Sponsor (A8-M):


jacqui Apprentice
jacqui
Posted
hi! wow im glad im not the only one with celiac because it sure does feel like it sometimes.

im 15 and was told i had celiac disease last october after being quite sick for a while, i was very anemic and had liver problems and then i had to have loads of blood tests and i biopsy on my duodenum and then they told me i had celiac disease :(

its hard. i still dont cope with it very well, i miss a lot of foods.

i want to get a book or something, i want some recepies lol

anyway, not quite sure if im doing the right thing here, or if anyone will even see this but thanks if you did!

love

Chloe

Hi Chloe,

Welcome! celiac disease is not as bad as it seems, really. It will get easier. My family and I had to go gluten free (gluten-free) April 2006. At first I would dream about cheesy buttery garlic bread and wake up licking my lips, but that only happened 2x. I aslo found out just after finally finding an authentic NY pizza place in Sacramento, CA! Talk about poor timing!!! That bumbed me out...

I would say the best way to deal/cope with the celaic diagnosis is to:

1. Let your friends, family, teachers ... know about celiac disease. So many people do not know what it is all about and actuially so much is coming out that it confuses me at times. Sheesh even most of our (forum guys and girls) doc's do not know much about celiac disease!!

2. Do not be shy or embarrassed about needing to ask for the manager or to talk to the chef when you go out to eat. Most food places are aware of celiac disease or are willing to accomadate you.

3. If anyone says it is no big deal, just respond hopefully it won't cause cancer, other autoimmune diseases...since you now eat gluten free. Or something back.

4. Don't get discouraged when even a loved one doesn't quite get it. And trust me there will be someone you thought you could count on or lean on and they will not understand or will make small of your diagnosis. My Mom was not on board at first and of course said it must be my Dad's side and vice versa, but now she is like an Advocate for Celiacs. Any ear she can get will hear all about celiac disease, which gets the person researching it on line.

She also was embarrased when I went out to eat with her, but when she came to visit I finally figured out to call the restaurant first and speak to the Chef (preferrably) or Manager on Duty and plan a meal with them. When we would get to the restaurant they knew what I needed and usually what I wanted to order...

5. There are all kinds of recipes on this sight to check out and there are a couple of cookbooks that have been suggested. The one we bought is, "The Gluten Free Gourmet Cooks Comfort Foods".

Hope this helps!

Jacqui

Guest Clo-Jay
Guest Clo-Jay
Posted

thanks everyone for the welcome :)

there is sooooo much that i find every day that i cant eat, gluten is everywhere lol

love

Chloe

little d Enthusiast
little d
Posted

Welcome Clo-Jay

It was not to hard for me at first but it got really hard for me later when all my test came back negative and I just wanted to prove the doctor wrong and started eating regular food again I only hurt myself in the process, but I am trying now to get back on track with eating what I need to. Don't get too discouraged like me and do more harm to yourself, tell your parents when you are in need of more food that you can eat, it just maybe good for them as well. When i make dinner my husband does not know sometime when it is Gluten free, last week I made some like hamburger helper from Mrs Leepers that was a chicken dinner and my family loved it. So not everything taste like cardboard, or dirt, it is not too scary. Hope that this helps a little

Donna

loco-ladi Contributor
loco-ladi
Posted

I am recently gluten-free myself and have found that for me the best way to deal with my "before" food cravings is to search do the legwork, fingerwork whatever it takes to find the replacement....

Yes I have had chocolate chip cookies, brownies, pizza and am currently on the lookout for crackers, my dintymore beef stew just isn't the same without my crackers, so I got the "DM", and on the lookout for crackers and I WILL find them!

Oh yeah, and sugar cookies are being made right after breakfast tomorrow anyone coming over! lol!

grey Explorer
grey
Posted

Hi Chloe!

There are a lot of new people on the boards and I can't believe how welcoming everyone has been, answering questions (again and again, I imagine) and being supportive. I'm ok with most of the kinds of food, but I'm still dealing with 1) that I can't just go to a restaurant on the spur of the moment, or get a snack in a coffeeshop anymore and 2) that gluten is in some soaps, cleaning products, and cosmetics! You're definately not alone.

Remember, all that gluten-free chocolate and Haagen-Daz ice cream! (I can't eat choc., but I'm a HD junkie)

grey

little d Enthusiast
little d
Posted
Hi Chloe!

There are a lot of new people on the boards and I can't believe how welcoming everyone has been, answering questions (again and again, I imagine) and being supportive. I'm ok with most of the kinds of food, but I'm still dealing with 1) that I can't just go to a restaurant on the spur of the moment, or get a snack in a coffeeshop anymore and 2) that gluten is in some soaps, cleaning products, and cosmetics! You're definately not alone.

Remember, all that gluten-free chocolate and Haagen-Daz ice cream! (I can't eat choc., but I'm a HD junkie)

grey

This is why I love everybody here they are so welcoming, so warm, we can fight like brothers and sisters, one big happy family. Im addicted I don't want to leave because it is like everybody knows what you are going through. It is great.

Ok I know enough of the mushy stuff

Donna

yes I have an addicting personality I'll blame on the Gluten :lol::lol: It is good at time and really bad the other times here it is good, because I am learning so much. :rolleyes::rolleyes:

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.