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

Newly Diagnosed Celiacs....needing Some Help!


Debkrause1

Recommended Posts

Debkrause1 Newbie

Hi. I have just been diagnosed with Celiacs a few months ago. Ive been doing a good job of only eating Gluten free foods but I had no idea it would be so hard. I am 24 years old and I have a 5 year old daughter who was diagnosed as well. The cost of the gluten free foods is killing me. My food bill went up quite a bit and we were struggling before this. I have a hard time going out to eat now. And trying to explain to a date why we can only go to certain restaurants is just weird for me. I know that restaurants have gluten free menus but when my friends and family eat the bread or other meals that I can't its upsetting. I mean its nice that I don't get sick anymore but its still hard to deal with. It seem that my little girl has adjusted to this much better then I am. I guess what I'm looking for his how some of you deal with having Celiacs, because I'm not dealing so well. Also any tips or advice you may have would be greatly appreciated. Thank you!


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

It is very common to feel the way you do at first, but over time it gets much easier. Especially when you feel so much better too!

As for the cost of gluten-free foods, many on this board report a lower food bill, because wholesome foods like veggies, fruits, beans, unprocessed grains, etc are often less expensive than processed stuff. They are also much healthier, so you win health-wise as well. Also, making your own gluten-free baked goods will save money over the prepackaged stuff, and they can be much better tasting, not to mention more healthy.

Many find that they do not go out to eat nearly as much as they used to. Both the cost and the risk of getting glutened are quite a deterrent. I think I'd try not to put myself in situations where gluten-filled foods are too prominent, like pizza parties and such. Once you learn how to make your own gluten-free pizza crust, you can have a pizza party without the pain!

I'm sure others will have some very helpful advice for you too. You've come to the right place for help and support.

Welcome to the board!

ShayFL Enthusiast

I can understand how you feel.

If you rely on pre-packaged foods, yes your food bill can go up.

Stock up on par-boiled brown rice (rice cakes), beans (cans or dry and dont forget refried), potatoes (baked and fries), sweet potatoes, corn (cob, grits, tortillas, corn bread) for your carbs. All of these are super cheap.

Add leans meats, fruits and veggies and nuts and seeds.

Healthy and need not bee expensive.

msmini14 Enthusiast

I know its hard, I just posted a thread on a company outing because it is still hard for me to attend a social event. If you buy the basic foods and stay away from all the pre packaged gluten-free items you will save a lot of money. Maybe reserve a day once a month to make something special since it is so expensive, that is what I am doing now.

Again I know its hard. I have consumed gluten some where and have been ill for almost 2 weeks. Makes me want to cry, I want to be normal.

Read the post I made and you will get some answers there too. =) Goodluck to you

Debkrause1 Newbie
It is very common to feel the way you do at first, but over time it gets much easier. Especially when you feel so much better too!

As for the cost of gluten-free foods, many on this board report a lower food bill, because wholesome foods like veggies, fruits, beans, unprocessed grains, etc are often less expensive than processed stuff. They are also much healthier, so you win health-wise as well. Also, making your own gluten-free baked goods will save money over the prepackaged stuff, and they can be much better tasting, not to mention more healthy.

Many find that they do not go out to eat nearly as much as they used to. Both the cost and the risk of getting glutened are quite a deterrent. I think I'd try not to put myself in situations where gluten-filled foods are too prominent, like pizza parties and such. Once you learn how to make your own gluten-free pizza crust, you can have a pizza party without the pain!

I'm sure others will have some very helpful advice for you too. You've come to the right place for help and support.

Welcome to the board!

I will try some of that. I havent been going to eat as much. Its just not worth getting sick. But for my little girl is hard we had tons of birthday parties to go to. I always bring her gluten free cookies and what not but she tells me she feel different. I hate it for her. This ajustment period is hard.

Debkrause1 Newbie
I can understand how you feel.

If you rely on pre-packaged foods, yes your food bill can go up.

Stock up on par-boiled brown rice (rice cakes), beans (cans or dry and dont forget refried), potatoes (baked and fries), sweet potatoes, corn (cob, grits, tortillas, corn bread) for your carbs. All of these are super cheap.

Add leans meats, fruits and veggies and nuts and seeds.

Healthy and need not bee expensive.

I know the pre-packaged food is more expensive but right now that is all i can buy. With my hours at work and and being a single mother I dont have time to make a lot of things. When I can I do but that usally only happends on the weekend.

Thank you sooo much for your tips. I need all the help I can get!!!

Debkrause1 Newbie
I know its hard, I just posted a thread on a company outing because it is still hard for me to attend a social event. If you buy the basic foods and stay away from all the pre packaged gluten-free items you will save a lot of money. Maybe reserve a day once a month to make something special since it is so expensive, that is what I am doing now.

Again I know its hard. I have consumed gluten some where and have been ill for almost 2 weeks. Makes me want to cry, I want to be normal.

Read the post I made and you will get some answers there too. =) Goodluck to you

I know what you mean. I have one friend that has this too and she has helped me a lot. But I find hanging out with her is eaiser because when we do dinner I dont have to worry. Like when I go to my friends houses and the cook or order out I cant eat anything most of the time. Then they feel bad and I feel stupid. I hate it.

I know what you mean about being sick. Its happend a lot since Im new to this. Before they found out I had Celiacs I lost jobs because I would get so sick. I was in the hospital all the time. Sometimes I think life hard enought why cant I at least eat what I want! Its kinda hard for my little girl. When there are birthday parties I always bring her gluten free cookies or something like that but she tells me she hates it because she feel different. And the kids are young and want to know why she gets those snacks instead of the cake. They are to young to understand and when they call her out she feels bad.

Not to mention her grandparents on her dads side dont really think she has this and they will let her eat a hot dog with a bun behind my back. Then she gets sick or consipated and she is miserable. I had to tell them if you wont follow the diet you cant see her. It just feel like life got so much more complicated because of this!

Im sooo sorry to hear you are sick. I hope you get to feeling better soon. I will check out your post now!


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



Celiac.com Sponsor (A8-M):



sickchick Community Regular

Lovely to meet you... you definitely came to the right place

Good good luck on your healing journey, and beautiful daughter too! :)

lovelove

sickchick

Welda Johnson Newbie

Hi Deb,

I feel for you and your daughter! I know how hard the beginning phases of getting on a Celiac diet can be. I've had symptoms since the age of 8 and am now 63. Whereas I was so sick before, now that I have been on the Celiac diet, I feel healthy spiritually, mentally and physically. I can see that having this condition is one of the main reasons I have learned more about who I am and how I can be the best that I can be. Having Celiac helps me be more aware of others and whatever illnesses they are experiencing or have experienced.

I was primary daycare provider for my newborn grandson when I discovered that he had Celiac and allegies to all milk and dairy, just as I do. I learned alot about taking care of an infant who had to be on a special diet, then about a toddler, then about a child of preschool age and how you can keep them well. It IS possible to help your child be gluten-free, and there is no more fiercely protective person on earth than a parent or grandparent. I was just talking to my son, who commented on a little girl who has Celiac and is a friend of my 14 year old granddaughter. For the past 7 years she has attended birthday parties and pizza parties with these same children, and her mother provides cupcakes for the birthday parties, and I think maybe gluten-free pizza for the pizza parties. All the other kids seem to take it for granted now that she will be eating a little differently, but they seem to love her as a friend, so it doesn't seem to matter. As a retired teacher, I can attest to the fact that being in touch with teachers, and with the parents of your child's friends, will make all the difference.

If you'd like to talk about some of the problems that are coming up, feel free to email me at Welda@att.net. Best of luck on making this work. You and your daughter will feel so much bettter. Welda

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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
      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
      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
      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
      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
      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.