Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
shan1523
Posted

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
Eeyorific
Posted

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
KaitiUSA
Posted

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

shan1523 Rookie
shan1523
Posted
  • Author

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
CarlaB
Posted

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
shan1523
Posted
  • Author

Good tip

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

thanks again

Shannon

spunky Contributor
spunky
Posted

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
CarlaB
Posted
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.

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


  • Member Statistics

    • Total Members
      128,020
    • Most Online (within 30 mins)
      7,748
    Gigi42848
    Newest Member
    Gigi42848
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      My son newly diagnosed

      By Nicola McGuire · Posted

      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Celiac pain relief

      By Scott Adams · Posted

      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...