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Envy You All!


mcsteffi

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mcsteffi Rookie

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.


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Jnkmnky Collaborator

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

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

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

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

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

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


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skoki-mom Explorer

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

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

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
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.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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