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Brandiwine

By Brandiwine
in Coping with Celiac Disease

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Brandiwine Contributor
Brandiwine
Posted

I thought this was cute.... Open Original Shared Link If I didn't feel like I already have to repeat myself enough with the 21 questions I get about my diet, I'd get one. 

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LauraTX Rising Star
LauraTX
Posted

Haha yeah, a popular blogger sells gluten-free skull and crossbones shirts, but I feel the same way, don't want to open myself up to too much conversation.    Would be good to wear to a gluten-free event or support group!

Brandiwine Contributor
Brandiwine
Posted
  • Author

I have seen them with the green Celiac ribbon too for awareness, but like you said best worn to a meeting or an event. I get so tired of having "that" conversation... 

BlessedMommy Rising Star
BlessedMommy
Posted

I find that it's best to keep my explanations short and simple. "If I eat gluten, I will risk getting a stroke and dying. So I have to be strict, there's no choice."

Brandiwine Contributor
Brandiwine
Posted
  • Author

I always try the short and simple route but they have to give me the sad eyes and ask "You can just pick off and eat the toppings, right?" ugh lol What I really hate is when people try to make me food that is "gluten free" or pick it up from a bakery in town that claims it is... I feel like jerk when I don't eat it. Some times I will just say "My kids with love this I will wait and share it with them" and just toss it out when I get home. I know it is lying but some how it makes me feel better than just shooting them down.... 

BlessedMommy Rising Star
BlessedMommy
Posted

Oh yeah, that is frustrating! What I do sometimes especially if it's a potluck setting and somebody brought a "gluten free" dish, is I smile and say, "Okay," and then just don't eat it and I don't mention it to them. That's harder though when somebody tries to make something and send it home specifically for you.

BlessedMommy Rising Star
BlessedMommy
Posted

In response to CC issues, I tend to tell people that I got a relapse of neuro symptoms just from bringing bread in my house for my kids. Then they kind of get how serious it is and how important it is to be strict.

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rrmac Apprentice
rrmac
Posted

In response to CC issues, I tend to tell people that I got a relapse of neuro symptoms just from bringing bread in my house for my kids. Then they kind of get how serious it is and how important it is to be strict.

OMG did you really get a relapse from bring it in to your house?

 

I'm new here I was officially diagnosed April 2014 after being told by a stupid gastro in 2005 that I was not Celiac, my son was diagnosed 2 months later. I had gastro symptom back in 2005 and went on the SCD diet for a year which probably contributed to the false neg after the Gastro had me eat bread for a few days (8) before the biopsy. 

 

After the that I stayed low carb since any increase in gluten (I thought it was a carb reaction) would cause gastro problem HOWEVER I always had Neuro issues which I didn't connect. Crazy blood pressure swings up and down the same with the heart rate way up and way down, small fiber neuropathy, spine pain, eye sight problems, anxiety, bladder issues, constant nausea which varied in its severity, severe fatigue, headaches that last for days .

 

My son who had severe small intestine damage also had mostly neuro symptoms the only gastro symptom he has was that he got full really fast.

 

So if you have any advice or would be so kind to share your story Im all ears.

 

Thanks Diane

 

PS I just tell people if I don't cook it I don't eat it - that seems to work for me.

BlessedMommy Rising Star
BlessedMommy
Posted

After a few weeks of my kids gluten challenging, I started getting severe chronic headaches and some speech difficulty. I got rid of most of it from the house and tried to be more careful and my symptoms subsided. Considering that my symptoms when I went gluten free included chronic severe headaches and a full TIA with numbness and speech difficulties, I doubt that these symptoms were coincidental.

Brandiwine Contributor
Brandiwine
Posted
  • Author

After a few weeks of my kids gluten challenging, I started getting severe chronic headaches and some speech difficulty. I got rid of most of it from the house and tried to be more careful and my symptoms subsided. Considering that my symptoms when I went gluten free included chronic severe headaches and a full TIA with numbness and speech difficulties, I doubt that these symptoms were coincidental.

 

I have speech difficulty to with CC. We found that my oldest son had celiac only a month or so after I did. It was another few months before I started noticing my youngest son getting mouth ulcers and turned out he also had it. We all get different symptoms, my sons don't seem to get the gastro symptoms as much. Elijah ( my oldest) has gotten sick to his stomach from eating a hotdog off of a regular bun. Not the bun just the hot dog but he was served with the hotdog in the bun and decided to eat it anyway. They aren't as sensitive as I am though with CC. I can't use shared surfaces that haven't been cleaned thoroughly. Can't share pots and pans or things of that nature. I can't kiss my nieces on the lips if they have had anything to eat in last hour. I won't get as sick as if I ate something with gluten but I will feel tired, get a head ache, mix my words up, that sort of thing. 

BlessedMommy Rising Star
BlessedMommy
Posted

Keep in mind that some celiacs don't get obvious symptoms from minor CC, but it is still damaging their gut. So it's important for all celiacs to be careful of CC, whether they are having outward symptoms or not.

rrmac Apprentice
rrmac
Posted

Keep in mind that some celiacs don't get obvious symptoms from minor CC, but it is still damaging their gut. So it's important for all celiacs to be careful of CC, whether they are having outward symptoms or not.

That is terrifying so how can I be sure that my son and I are not being CC are blood tests the way to go and who runs them the Gastros office is not interested in follow up blood tests?

 

The non-celiac's in the house are not willing to go gluten-free, I can't blame them but I have a lot of work to do I wish I could build myself a separate kitchen. lol

 

wow Brandiwine I also have speech issues a lot of symptoms I've had I blamed on Hashimoto's thyroiditis.

 

feeling overwhelmed 

BlessedMommy Rising Star
BlessedMommy
Posted

Do the non-celiacs in your house cook? In my house, they don't, so I call the shots. But I don't insist that they go gluten free, I just ask them to avoid eating gluten in the house. They can eat all they want in restaurants, at potlucks, or friends' houses.

frieze Community Regular
frieze
Posted

That is terrifying so how can I be sure that my son and I are not being CC are blood tests the way to go and who runs them the Gastros office is not interested in follow up blood tests?

 

The non-celiac's in the house are not willing to go gluten-free, I can't blame them but I have a lot of work to do I wish I could build myself a separate kitchen. lol

 

wow Brandiwine I also have speech issues a lot of symptoms I've had I blamed on Hashimoto's thyroiditis.

 

feeling overwhelmed

 

you know that saying,   "if mamma ain't happy, ain't nobody happy?"

Brandiwine Contributor
Brandiwine
Posted
  • Author

My room mate eats gluten but only prepackaged like snack cakes. He eats what we eat. The only exception is sandwich bread because we all pack our lunch and gluten-free bread is so expensive. He uses a paper towel or paper plate to make his sandwich then wipes the counter down afterward. Once you have been on the diet you should be able to tell if you are getting CC. If you are one of the ones who don't show symptoms all I can recommend is to be super careful and read labels, even ones you have already checked before because they tend to change without notice. 

Serielda Enthusiast
Serielda
Posted

I love it, I plan to order one for humor purposes when i get the chance. 

I thought this was cute.... Open Original Shared Link If I didn't feel like I already have to repeat myself enough with the 21 questions I get about my diet, I'd get one. 

rrmac Apprentice
rrmac
Posted

Do the non-celiacs in your house cook? In my house, they don't, so I call the shots. But I don't insist that they go gluten free, I just ask them to avoid eating gluten in the house. They can eat all they want in restaurants, at potlucks, or friends' houses.

Yes they do cook my 23 yr old daughter is trying but I caught her not washing her hands after handling bread. ughhhhh

cyclinglady Grand Master
cyclinglady
Posted

you know that saying, "if mamma ain't happy, ain't nobody happy?"

Ha! Ha! Frieze.....and so true!

cyclinglady Grand Master
cyclinglady
Posted

Yes they do cook my 23 yr old daughter is trying but I caught her not washing her hands after handling bread. ughhhhh

When we had one celiac in the house (hubby), we allowed gluten but I controlled EVERYTHING in the kitchen. When I was diagnosed (and my gluten-consuming kid became old enough to cook), we went completely gluten free. She takes gluten items to school (mini packs of cookies, croissants that I bag,etc.). She can not consume them in the house. She washes her hand upon returning from anywhere.

Our health is more important that my kid's wish to eat gluten. And when we did allow gluten, I did not eat it in front of my husband nor did he eat ice cream in front of me (milk allergy). I think that is called being supportive.

Some folks do well in a shared kitchen, but it is a relief for me not to worry about gluten in my own home. I can relax and heal.

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