Emotional Toll of Celiac Disease

Tinsley discusses that while finally having the diagnosis of celiac disease can lift many weights, we all have bad days and the lack of support from friends and family can add extra and unneeded difficulty to a celiac diagnosis.

Category:

People & Blogs

Tags:

• celiac disease
• gluten-free
• emotional toll
• diagnosis
• family support
• friend support

[CJEB4]

My son has several food allergies including wheat, cassein, chicken, beef, yeast and peanuts. He is currently hospitalized and the dr's are asking me if they can feed him these foods and "see what happens". So I said "you want me to let you make him sick so you can see him sick? The idiot told me "yes". He is 6 years old and has autism so he doesn't avoid the problem foods and will be sick for up to a week from eating any of these foods.

[Celiebo]

@CJEB4 I am so sorry to hear about how the doctors are treating your 6 year old son. It amazes me the ignorance in the medical community to food allergies & intolerance and it kills me when they brush it off as some kind of hypochondria. Good for you for taking on the hardest job in the world of being an advocate for your son. I hope we will see a onslaught of education on these conditions and see a willful response from the medical community. I hope he is doing better!

[Agulliblegirl]

I so understand what you are saying. I hate the " your not going to die" comment...so clueless.

[Celiebo]

@Agulliblegirl It just gets so frustrating sometimes, especially coming from the people you would hope would give you the most support! And you are right, people are just so clueless, but hopefully with the way awareness is headed in this area we'll get the "you're not going to die" comment less and less!

[PinkHawk191]

I just found out I have celiac disease two days before Christmas. I went out with my friend and her mom to dinner. She was like a little bit of macaroni and cheese will be ok. It's not a big deal.She doesn't understand that even eating a little bit that I can get very sick from it. I refused the macaroni and cheese and just ate the chicken. I wish people would understand what people like me go through.

[Amykay29]

It's so frustrating! The other day my uncle was literally waving a donut in front of my face saying come on a little piece won't hurt you. I refused, but later when I was alone in the room I was so angry and fed up that I ate one. I ended up spending new years and the days after feeling nauseous and horrible. It just reminds me of before being diagnosed when it was so bad that couldn't go a day without throwing up or almost passing out from being malnourished and anemic. It does hurt me. subbed