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

Just Need To Vent


shan1523

Recommended Posts

shan1523 Rookie

Hello all,

I know I dont post alot, just here and there, but I do read and learn from you all a lot...

I just need to vent though to people who have been there/understand

My in-law side of the family is having a huge anniversary bash at an Italian Restaurant (Buca) and well we have a 2 year old who is celiac...so we have told everyone that he is not going and will join up with everyone at the house later...but instead of that being ok, we get bombarded with....cant you find something for him to eat, You could just bring something from home, and oh it wont be that bad...

UGH! first of all any 2 year old sitting still in a restaurant is a feat in itself, and him not touching any food, or anyone touching him with food on their hands will not be easy....and hello...I dont want to bring my own food, I have to do that for every other family gathering...so we will skip the meal and come later...

nobody gets it...they just think we over-react, and think that having some diarhea later is no big deal...well if thats all it was MAYBE...but hello it damages his body..and he is in pain whenver he eats anything....they saw him grab one goldfish cracker at a cook-out and he was a wreck for 5 days....

My family gets it a bit more since there is crohn/colitis, and dairy issues (and probably celiac) all over my side of the family...but his side has no idea of it, and my sis-in-law is a nurse on a GI floor at Mayo....

UGH (meanwhile her son has tons of RED FLAG symptoms of a dairy allergy, but doesnt see it..but thats another story)

meanwhile I have a 11 week old with severe reflux (on prevacid and nutramigen) so I fear we are headed down the same path

SO i finally emailed my MIL with some articles (again) and stressing how we dont enjoy this part of our lives, but it is part of our lives, and while some may find it annoying, its not there issue, and they should want to see there grandkid healthy..blah blah blah...now Im bracing myself for the response.

I just wish this disease was more know about so people dont think its some nothing thing

thanks for letting my vent

Shannon

ds Noah 6/28/04...celiac, soy free, outgrew dairy intolerance

dd Audrey 7/13/06..severe reflux, suspect MSPI, on prevacid and nutramigen..here we go...


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



Celiac.com Sponsor (A8-M):



Eeyorific Rookie

Shannon,

Feel free to vent any time, that's what we're here for.

I'm sorry the in-laws just don't get it. It really does make things harder than they need to be, doesn't it? How about hubby? Is he supportive and understanding of the disease? It's been 2 years since my sons dx. My dh has come a long way.. but only when it comes to the kids. (my dd and I went gluten-free last Nov) and he while he says he's supporitive, if I state I'm craving gluten, he'll have keys in hand and ready to go get it. :rolleyes: I guess he and I have seperate ideas of being supportive. lol

At any rate, I hope that this time the letter and reading material get "through".

Kristie

KaitiUSA Enthusiast

We are all here to help you get through it all and support you so venting is fine

shan1523 Rookie

Thanks for letting me vent

Oh and Dh is very supportive and gets just as mad/annoyed as I do, but is more of a "quiet type" so he supports us wholeheartedly, but doesnt really explain alot of stuff to the rest of the family. DH was a little skeptical at first (when ds was 5 months and we were realizing something was wrong) but ever since hes been about a year old and DH has seen what happens with an accidental glutening he is fully behind the diet and whatever else needs to be done.

which of course is nice, I just wish he would talk to his family more about it.

thanks again

Shannon

ds Noah celiac 2 yrs old

dd Audrey reflux/GERD 11 weeks old

CarlaB Enthusiast

Thanks for feeling like you can vent to us!!!

I have found with my own family (not just with celiac problems, but with anything), that just telling them you will be there later and not explaining why is the best route. If you explain, they try to "fix" the problem by coming up with suggestions. If you just say, "We can't make it for the dinner, but we're really excited to see everyone and will come as soon as we can." Then there's nothing to solve. It's taken me years to get to this point, but I've finally figured it out. No matter how they pry, you don't give an explanation, it's just, "we can't."

shan1523 Rookie

Good tip

I may have to use that one in the future....families can be so irritating...

thanks again

Shannon

spunky Contributor

It's frustrating, for sure! Just in case you decide to give in and go to the Italian restaurant...there are Italian Restuarants in our area that will cook your own pasta for you (you have to bring the bag of pasta, specify that it needs to be cooked in a clean pot, and make sure they can deal with the sauce...ours will do dairy-free, gluten-free sauce. Then you can have a hot pasta dish...don't know if your little one would like it or not, but there are some Italian restuarants in our area who do this...they still charge full price for the meal, though.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
It's frustrating, for sure! Just in case you decide to give in and go to the Italian restaurant...there are Italian Restuarants in our area that will cook your own pasta for you (you have to bring the bag of pasta, specify that it needs to be cooked in a clean pot, and make sure they can deal with the sauce...ours will do dairy-free, gluten-free sauce. Then you can have a hot pasta dish...don't know if your little one would like it or not, but there are some Italian restuarants in our area who do this...they still charge full price for the meal, though.

Honestly, I've heard here on the board that Buca is acommodating. But, like you said, it only takes a toddler a second to grab a piece of garlic bread.

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
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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.