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

Recommended Posts

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.


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



Celiac.com Sponsor (A8-M):



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


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



Celiac.com Sponsor (A8-M):



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.

Archived

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

  • 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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.