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
Debkrause1
Posted

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
RiceGuy
Posted

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
ShayFL
Posted

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
msmini14
Posted

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
Debkrause1
Posted
  • Author
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
Debkrause1
Posted
  • Author
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
Debkrause1
Posted
  • Author
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
sickchick
Posted

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
Welda Johnson
Posted

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.

Go to topic listing

  • 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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    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

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.