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

Envy You All!

mcsteffi

By mcsteffi
in Coping with Celiac Disease

Recommended Posts

mcsteffi Rookie
mcsteffi
Posted

I found out my son, 22mths, has celiac about two weeks ago. I just found this web site and have been sitting here reading for almost 2 hours. I HAVE SOOOO MUCH TO LEARN!!!! I dont even know where to start. My one trip to the health food store was sooo expensive and stressfull and the regular grocery store just made my head spin. I didnt even know food could be contaminated.... that I was going to have to build a new kitchen for a baby!! lol.

So I envy all of you that have this down. You might not be able to eat every thing that you would like to eat but at least you KNOW what you can and can not eat.

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

Celiac.com Sponsor (A8-M):


Jnkmnky Collaborator
Jnkmnky
Posted

Open Original Shared Link

Open Original Shared Link

Here are two good sites for great food. All of K's foods are great. You'll get really good at the diet really quickly. Especially if you're reading posts here.

lbsteenwyk Explorer
lbsteenwyk
Posted

Welcome to the board! This really does get easier, I promise! The diet can be overwhelming at first, especially when you have the added stress of caring for a toddler who has been ill. My dd has been on a gluten-free diet for nearly two years and at this point, it just seems like a normal part of our lives. You just have to push through those first few months, learn every thing you can, take lots of notes, and get yourself organized. It will take a while to figure out which gluten free foods your son likes. I would start out with just a few specialty items and rely mostly on foods that are naturally gluten free. You can get lots of advice on that just by reading through the forum for Parents of Children with Celiac Disease. THere are tons of great ideas there, so scroll back several months and look for topics that interest you.

You're not alone in feeling overwhelmed. Following a gluten free diet is a learned skill; just like learning anything new, it can take time and practice. Let us know how we can help.

jenvan Collaborator
jenvan
Posted

welcome! just remember we were all in your shoes at one point. you'll be helping others before you know it! have you read 'wheat free, worry free' by danna korn? excellent resource, it will teach you a lot.

happygirl Collaborator
happygirl
Posted

There is a very good gluten free pasta made by Tinkyada. You will find that many people on the board rave about it and it is many people's favorites, including mine! I've made pasta salads, homemade mac and cheese, etc and served it to people who didn't know it wasn't "regular" pasta and they loved it!

Good luck with learning. We were all in your shoes at one point and we are STILL learning. I found a lot of good information by using the "search" function on this board to see what others have posted, and it has answered many of my questions.

VydorScope Proficient
VydorScope
Posted

22months? We are ins the sma bot as you... well 5 months later or so. My son is about 26 months now and we found out around 20 or 21 months. I am a dad not a mom so I dunno the exact dates and ages LOL.

Start simple, find a handlfull of things that your child WILL eat that are safe and build form there slowly. Keep good notes of thnigs you checked on. Print out the forbiden food lists, and the safe company lists to bring wtih tyou to the store. Its all overwhelming if you try to change the entire diet at once. SO first simplify the diet best you can, and then build from there.

and POST questions! Many ppl have gone before you and can offer help... or even just a sholder to cry on.

FaithInScienceToo Contributor
FaithInScienceToo
Posted

WELCOME!

First: Your son obviously has a Mommy who will try her best to keep him safe!

LUCKY BOY!

OK, so - here's what I have to add:

Keep it simple at first...

For instance....don't try to learn more than the basics

....and don't go too far overboard on buying gluten-free products...I have so many now that I will need to freeze a lot of them, as I won't get to use them before they expire...and, by then I will have learned how to use my bread machine and also how to bake gluten-free ;-) ...

PLUS, I may be needing to ALSO go casein-free, and many of them will have 'to go' if that is the case :( ... lesson there...maybe you should be careful to not stock up on gluten-free items that also contain casein (dairy) ...just in case your son MAY also end up needing to go dairy-free too...

AND, you may want to make extensive use of the search function on here - there are some incredible posts/threads...when you find the ones you want to re-read, you can send them to yourself, via the 'email this' button, and re-type in the subject line any info about why you sent it to yourself, so it will make it easier to file in your mailer program's folders.

BEST WISHES in your journey!

LOVE, Gina

PS - if you want lists of info people have collected, some members have begun blogs - accessible via their ID links...I am now planning on making one, too - it will contain all of my Net links that I have found to be most important....and any other info I feel is important to newbies

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

Celiac.com Sponsor (A8-M):


skoki-mom Explorer
skoki-mom
Posted

Hi and welcome to the board. I can appreciate, as a mother, how overwhelming this must be. While I don't wish for any child to be ill, in some ways I envy your son because he will grow up on a gluten-free diet and never know what he is missing, lol!! I was dx at age 35, giving up all my favourite foods at that age has been hard, I have to battle some cravings and just overall feelings of loss. It seems to me that the younger people on this forum are sooooo well adjusted, they have had celiac disease pretty much all their lives and being gluten-free is just normal for them. I truly admire them! The gluten-free diet isn't so bad, if I can do it anyone can!

tarnalberry Community Regular
tarnalberry
Posted

Welcome to the board. As others have mentioned, it'll get easier. Go slow, and be patient; it's a big learning curve. Starting simple is the best way to go, in my opinion, and can help minimize costs.

mcsteffi Rookie
mcsteffi
Posted
  • Author

Thanks to everyone for the support! Its just so much to learn... way more to learn than I thought it was going to be. This fourm is a huge help though. This is a great support group.

dogear Rookie
dogear
Posted
Hi and welcome to the board.  I can appreciate, as a mother, how overwhelming this must be.  While I don't wish for any child to be ill, in some ways I envy your son because he will grow up on a gluten-free diet and never know what he is missing, lol!!  I was dx at age 35, giving up all my favourite foods at that age has been hard, I have to battle some cravings and just overall feelings of loss.  It seems to me that the younger people on this forum are sooooo well adjusted, they have had celiac disease pretty much all their lives and being gluten-free is just normal for them.  I truly admire them!  The gluten-free diet isn't so bad, if I can do it anyone can!

<{POST_SNAPBACK}>

I don't know about that, I'm almost 31 and started eating gluten-free at 29. Of course, there was no diagnosis of anything in my case. And while, I do feel better gluten-free, I wasn't particularly expecting any health improvements. Initially, I just WANTED the gluten-free diet, pretty much for its own sake. And I felt very, very strongly about wanting to be on that diet, that I did it despite extremely strong feelings of guilt that I was doing something horribly wrong. In fact, I the wish for that diet goes back to about the age of 8 or so in my case-but the parental units pretty much forbid it. Then about 23 or so, I started thinking "You know, I'm an adult now. I *could* do this, just because I damn well want to. I don't need parental permission anymore." But guilt and the fear of looking foolish, kept it at bay for six more years.

But really thinking of it, I don't especially envy those who started gluten-free at a young age. If I'd been put on this diet as a kid, I'd probably have resented it. I was the little girl, who did her eye excercise five times as much as the eye doctor told her to, so I could get rid of my glasses in less than one year rather than three or four. I was the child, who counted days to getting rid of braces. If I'd been given a permanent gluten-free diet as a kid by medical decree-instead of my own wishes-I'm sure the "never get rid of it" aspect, wouldn't have gone down well, and I'd have rebeled. And I'm sure, I'd still resent the diet to this day.

(I say this of myself personally. I don't think it would necessarily apply to people with different personalities.)

But having voluntarily taken the diet up and gotten health benefits as an adult, is a different ball game. I don't miss anything. Although some of the food given up were "favorites" before, I don't miss them in the least. In fact, I prefer the next addition of the Spanish Inquisition, than to ever eat them again.

Archived

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

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


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.