Need help desperately now!

[squirmingitch]

4 hours ago, kareng said:

I took squirmy’s comment to mean that we should stop whining that our families or a sandwich shop don’t  feed us safe gluten-free food and take matters into our own hands. Bring our own food, cook or help the family member cook, go to restaurants that have a good understanding of gluten-free ( not expect every place to spend the money and training to provide safe food.

 

so I think you are actually agreeing with Squirmy?  Lol

Exactly. Thank you Karen. 

Moggy, someday you might want to look up my photos on the dh photo bank. Start with my post on 1/22/13 & continue through the next page.

 

[gluten-free girl 67]

Squirming itch: wow, your reply was rude in my opinion. I should have explained that this post is mainly about my anxiety and social isolation regarding eating at other people's homes for holidays. I get the message: bring my own food or don't go, or eat before I go. That also gives me anxiety. Am I the only one here with social anxiety regarding being Celiac? I don't think it's wrong to ask for FAMILY support regarding food. I am not talking about strangers or restaurants. now get off your high horse.

[gluten-free girl 67]

I am just tired of people being so judgmental in general about what people eat. I bet there are Celiac's here who have brought their own food to a gathering and people look at them cross eyed or think they're rude for not eating their food. I just wanted to feel included....so sorry you think I am such a BAD, RUDE person Squirmy!

 

[gluten-free girl 67]

7 hours ago, Moggy said:

Whining! Are you kidding me! I guess you dont react to under 20ppm, not really gluten free food, are not stuck in a bathroom in agony with diarrea and vomiting after eating allegedly gluten free food, or because your non gluten free little kid kissed you! I guess you arent crying because despite being ever so careful your dh flared up again and you cant take dapsone. 

Take your whining accusations somewhere else.

I cant even eat rice, no processed foods that is really low not no gluten, and I wouldn't dare eat at any restaurant whatever their claims

When people are suffering so badly how dare you accuse us of whining!

I dont knowingly eat any gluten, but am currently sicker than hell. Too right ill whine, im in agony and cant eat without fear.

Empathy is a great skill to work on.

 

i am sorry you feel so bad Moggy. I totally agree with you. I was just wanting to feel included at Easter. I don't feel comfortable bringing my own food or not eating at all. It's called social anxiety. I have chosen to therefore stay at home and do something fun with my daughter instead.

[Ennis-TX]

1 hour ago, gluten-free girl 67 said:

I am just tired of people being so judgmental in general about what people eat. I bet there are Celiac's here who have brought their own food to a gathering and people look at them cross eyed or think they're rude for not eating their food. I just wanted to feel included....so sorry you think I am such a BAD, RUDE person Squirmy!

 

I have done gluten free bakery sales with organic and gluten free baked goods some even vegan....you should see the looks and hear the stuff people tell me at teh farmers markets....BEST ONE YET, like 400+ pound guy... "Organic makes my stomach hurt" then he waddles off and turns sideways to shuffle into a door of a local business......like organic just means no chemicals or pesticides were used in growing or production.....OK NOW. I have also have people alwasy scuff at me thinking it is a fad issues with excuse and commentary like "i like my gluten" "isn't that gross" etc.....yeah.
I am honestly judgmental of gluten eaters....I have had such adverse effects to gluten....watching someone else eating it like watching a alien eating rat poison and drinking anti freeze....Like "are you alright cause I would be on the ground in pain from that" So I feel like sometimes others are not of the same species.....autism does not help. SO it does not matter what they think of me....my mind they are a different kind of being then me and we just eat different foods.

[gluten-free girl 67]

Ennos thank you for your insightful replies. I always stop and think after reading your posts. You have an interesting perspective. 

[RMJ]

I’ve used my gluten free status as an excuse to avoid social occasions - I wasn’t comfortable with them even before I was disgnosed with celiac.  Still, in order not to be a complete hermit I tried going to a party and not eating.  It was a little awkward but not nearly as bad as I expected.  The next time I tried it at a lunch with coworkers it was even easier.

Gluten free girl 67 I hope you enjoy Easter with your daughter.

[gluten-free girl 67]

Awww. Thanks! We are going to see a movie and the popcorn has been safe to eat! ?

[cyclinglady]

4 hours ago, gluten-free girl 67 said:

Squirming itch: wow, your reply was rude in my opinion. I should have explained that this post is mainly about my anxiety and social isolation regarding eating at other people's homes for holidays. I get the message: bring my own food or don't go, or eat before I go. That also gives me anxiety. Am I the only one here with social anxiety regarding being Celiac? I don't think it's wrong to ask for FAMILY support regarding food. I am not talking about strangers or restaurants. now get off your high horse.

I personally do not think the Squirmingitch was rude.  Like her, I find it hard to imagine that someone can safely prepare food when they do not have celiac disease (or NCGS) or live with someone who has celiac disease regardless of family status.  The risk is too great for me.   I am sad that I have had to give up the convenience of easily obtainable food that the majority of the population enjoys.  I feel like Ma Ingalls (except I have a gas stove and not a wood burning stove) cranking out three meals a day for my gluten free family on top of my full time job and volunteer work.   It can be exhausting!   I also end up hosting most holiday functions as a result because I want my hubby to be able to enjoy his food.  For me, it is not as important.  I  have learned that it is being with family that counts.  

Did you read Squirmingitch’s  link?  Did you see that she has suffered from the hellacious DH rash?  Six months of autoimmune hives that I experienced last year, was a piece of cake compared to what DH sufferers must face.  At least antihistamines helps relieve my itch. 

But I do get the anxiety.  Mine  appears when I have had a gluten exposure.  I know you have had celiac disease since 2010 and are probably  more knowledgeable than me about the diet, but when was the last time you had your antibodies checked or a follow-up endoscopy?  Have you developed additional autoimmune disorders that could be related or contributing to your social anxiety?  

This recent article states that some 70% of celiacs are not healing due to gluten exposure despite being strictly gluten free.  It also talks about social isolation too.  

Open Original Shared Link

Sadly, recent research is discovering that our “safe” gluten free food sources may not be so safe.  

Open Original Shared Link

So disheartening!  

You sound like your job is emotionally draining.  Perhaps, time for yourself is needed.  I hope that you enjoy your Easter at home with your daughter.  Savor it.  Life is short, but you already know that.  

 

 

 

[ch88]

I can totally see why you might find the holidays stressful do to celiac disease.

On the other hand though, if someone has no social anxiety and no clue what celiac disease is I can see how there could be some major communication problems and misunderstandings.  I don't think the general population has a good sense of the seriousness of celiac disease. Some people that I talk to think of it as just a form of indigestion.  Also people don't understand social anxiety. Most people wouldn't feel embarrassed about bringing there own food to a party.   I think it is really difficult for people to comprehend what that looks like and if you have social anxiety that makes it difficult for you to explain.

[Gemini]

I don't think Squirmy was being rude, either.  There seems to be this pervasive attitude going on today against people who adjust well to challenges in their life.  Couple that with people who probably have additional health issues, along with Celiac, and aren't healing as fast as they think they should and this is what you get.  Whether you like it or not, Celiac's have to take charge in order to heal and that may bring on resentment from family members.  I had extreme resentment from family members and while it was a bit deflating in the beginning, I moved on and if they don't like the way I manage my diet, that's their problem.  I  have brought my own food many times to gatherings and never think twice about it. If you are having anxiety about this, some time with a counselor may be a good idea.  A good one can do wonders for you.  It might also be that the anxiety is a result of not being healed yet.  That will go away with time.

I have a 91 year old mother in law who happily eats gluten free everything at our house. She always shows gratitude and compliments me on my meals.  Never a word of negativity has ever passed her lips.  She understands the importance of the diet and respects that.  If only the rest of the gluten eating world had her attitude, things would be easier for us, but family push back can be dealt with. You have to learn to stand your ground, without all that anger.  I realize that anger is part of the grief process but don't let it consume you.  I am pretty damn sensitive myself but am doing extremely well after 13 years gluten-free.  I no longer consider myself as someone with a weird diet and do not feel socially ostracized.  That will come with time.

[Gemini]

On 3/30/2018 at 3:49 PM, gluten-free girl 67 said:

My mom and sister both got tested for Celiac and the don't have it. I had my kids tested too. I'm just the lucky one.

Being tested once with a negative only means you don't have it now.  Family members are supposed to be tested every couple of years or if they become symptomatic.  Believe me, there were family members of mine who happily proclaimed they didn't have it but 10 years later, they have been diagnosed.  If they had listened to me in the beginning, they wouldn't have gone that long and had so much damage.  There are more too but denial is the other bad disease in my family. 

[Gemini]

On 3/31/2018 at 11:29 AM, Moggy said:

Whining! Are you kidding me! I guess you dont react to under 20ppm, not really gluten free food, are not stuck in a bathroom in agony with diarrea and vomiting after eating allegedly gluten free food, or because your non gluten free little kid kissed you! I guess you arent crying because despite being ever so careful your dh flared up again and you cant take dapsone. 

Take your whining accusations somewhere else.

I cant even eat rice, no processed foods that is really low not no gluten, and I wouldn't dare eat at any restaurant whatever their claims

When people are suffering so badly how dare you accuse us of whining!

I dont knowingly eat any gluten, but am currently sicker than hell. Too right ill whine, im in agony and cant eat without fear.

Empathy is a great skill to work on.

 

Most Celiac's everywhere react to food with gluten in it.  The 20ppm rule came from scientific research that proved the vast majority of people do not suffer intestinal damage at these levels. That may change down the road but for now, it is the number that works for most. Not all, but most people.

DH is a different animal.  You can have IgA deposits in your skin for up to 2 years, the last I read, before it all clears out. Unfortunately, the skin version takes much longer to heal from than those with traditional symptoms, which is why DH can be so maddening. But do not think that your suffering is any worse than those of us who have classic Celiac and came close to dying because their weight got so low. I will never forget the week of hell I suffered right before diagnosis, when I hit the wall and could not leave the bathroom because I was so sick. This is why I am so stringent with my diet. Almost everyone on this forum had their hell time so they realize your pain and understand your suffering. There is only so much empathy and support we can give before you have to run with this on your own.  You will get better but for many of us, the road to recovery is long and bumpy.

[Gemini]

On 3/30/2018 at 2:46 PM, Johnny55400 said:

When there is a will there is a way... 

Open Original Shared Link

This is a great website to help us with finding reputable restaurants that serve gluten free options/meals.  I can't promise every one of them is safe but there are plenty of reviews by other Celiac's to read and help you make a decision on whether it is safe for you.  I have had good luck with it when traveling.

[Moggy]

1 hour ago, Gemini said:

Most Celiac's everywhere react to food with gluten in it.  The 20ppm rule came from scientific research that proved the vast majority of people do not suffer intestinal damage at these levels. That may change down the road but for now, it is the number that works for most. Not all, but most people.

DH is a different animal.  You can have IgA deposits in your skin for up to 2 years, the last I read, before it all clears out. Unfortunately, the skin version takes much longer to heal from than those with traditional symptoms, which is why DH can be so maddening. But do not think that your suffering is any worse than those of us who have classic Celiac and came close to dying because their weight got so low. I will never forget the week of hell I suffered right before diagnosis, when I hit the wall and could not leave the bathroom because I was so sick. This is why I am so stringent with my diet. Almost everyone on this forum had their hell time so they realize your pain and understand your suffering. There is only so much empathy and support we can give before you have to run with this on your own.  You will get better but for many of us, the road to recovery is long and bumpy.

I know it wasnt you, but accusing someone of whining is very rude and totally lacking in compassion and empathy.

I was always taught that if you cant say something nice, dont say anything at all.

I dont presume im suffering more than others, but fail to see how someone can be so unkind if they have personal experience of the disease. 

What it boils down to is privilege. Looking down on folks who arent as stoic as you, or who perhaps cant afford to eat gluten free as comfortably as you, or afford conprehensive medical care, or who arent surrounded by a load of well educated and informed people.

My wider family are good people, but downhome. They do not and will not ever get it. I love them, but eating with them isnt an option. 

There was no need to be rude or harsh. 

 

[squirmingitch]

On 3/31/2018 at 11:29 AM, Moggy said:

Whining! Are you kidding me! I guess you dont react to under 20ppm, not really gluten free food, are not stuck in a bathroom in agony with diarrea and vomiting after eating allegedly gluten free food, or because your non gluten free little kid kissed you! I guess you arent crying because despite being ever so careful your dh flared up again and you cant take dapsone. 

Take your whining accusations somewhere else.

I cant even eat rice, no processed foods that is really low not no gluten, and I wouldn't dare eat at any restaurant whatever their claims

When people are suffering so badly how dare you accuse us of whining!

I dont knowingly eat any gluten, but am currently sicker than hell. Too right ill whine, im in agony and cant eat without fear.

Empathy is a great skill to work on.

 

Moggy, please re-read my post that you are so upset about. I have re-posted it below. Please, This time, read the entire post and do not simply stop & get in a huff after you see the word "whining". If you read the entire post in context, it is clear that I was referring ONLY to the OP getting bent out of shape because she wanted others to be responsible for making sure she had safe food to eat. And to people who think all eateries should be forced by law to provide a gluten free option which again boils down to wanting others to be responsible for providing us with safe food.

BTW, I am one of the two people who have been helping you & showing such empathy on your super sensitive thread.

Having the depth of character to admit when you made an accusation in haste is also a great skill to work on.

Peace

On 3/30/2018 at 9:39 PM, squirmingitch said:

My goodness, the whining! This is our disease. It is up to us to keep ourselves safe by being responsible for our own food whenever & wherever we go. I would never ask someone to get special food for me to have at their house. Taking that one step further by asking someone, even my sister, to ask the hostess if she will get foods specifically for me sounds even more ridiculous. As ridiculous as making it mandatory for restaurants to have one gluten free option in their menu. Talk about feeling like you're entitled!

Why do you people think others are supposed to take care of your food for you? Would you also think that diabetics should be provided insulin when they go to visit people? Should insulin be mandatorily provided at interstate rest stops?

Pretty absurd when you look at it that way isn't it?

 

[Moggy]

Squirming,  You were only on the 'empathy' thread to prove a point about this one.

It's not too much to expect gluten free restaurants to actually be so, or to not be treated like a social pariah. 

I chose to not eat out, at commercial or other peoples houses because they cannot get it right and I get sick.

Perhaps that whining comment was so glaringly uncalled for that its hard to see past that.

As usual forums have a few superstars that can be as passively aggressive obnoxious as they want to be.

Im done here.

Peace out.

 

 

[cyclinglady]

5 minutes ago, Moggy said:

Squirming,  You were only on the 'empathy' thread to prove a point about this one.

It's not too much to expect gluten free restaurants to actually be so, or to not be treated like a social pariah. 

I chose to not eat out, at commercial or other peoples houses because they cannot get it right and I get sick.

Perhaps that whining comment was so glaringly uncalled for that its hard to see past that.

As usual forums have a few superstars that can be as passively aggressive obnoxious as they want to be.

Im done here.

Peace out.

 

 

You know, try reading some member past postings.  Use that little search box to your advantage.  You will see a pattern of a member’s behavior.  It is rare, but sometimes, a member might have an off day or intepret the written word that was not the original intention.  I have made this error plenty of times!    For the most part (and I have been a member for about five years), people are here to help one another.  

Communicating on the internet without the benefit of physical social interaction can cause miscommunication.  Keep that in mind.  It is a huge problem in our current society, but that is a another topic.  

Do not take offense, but you sound like me when  have been glutened (better to say suffering from active celiac flare-up).  

Hang in there!  

[Gemini]

3 hours ago, Moggy said:

What it boils down to is privilege. Looking down on folks who arent as stoic as you, or who perhaps cant afford to eat gluten free as comfortably as you, or afford conprehensive medical care, or who arent surrounded by a load of well educated and informed people.
 

 

I did have a lengthier response to this but since moggy is done, I thought the only thing that needed mentioning here is this paragraph is nonsense. Privilege is such an overused word today that it has lost it's meaning. It also offers an insight to what the real problem is for her/him.  I only hope that down the road, the attitude will change for the better so actual healing can take place.

[rc12126]

On 3/29/2018 at 9:01 PM, gluten-free girl 67 said:

Honestly my family has never really been supportive of my celiac. I am tired of having this disease. It is mentally ruining me. I work as an advice nurse listening to people’s medical issues for 8 hrs a day and i feel like nobody wants to hear about my dosease and how it affects me. 

I feel like this as well. I will not pack my own food to take everywhere like I am kindergarden and mommy packed my lunch bag....

[cyclinglady]

2 hours ago, rc12126 said:

I feel like this as well. I will not pack my own food to take everywhere like I am kindergarden and mommy packed my lunch bag....

Packing a lunch was what people did 50 years ago.  They took lunch to work, school or on a daily adventure (called picnics).    Rarely people ate out.  People had dinner parties or BBQs.    That was “eating out”.  My Dad had an extended lunch break at school so that he could go home to eat at hot meal.    That is what kids did in the city. 

I think you need to re-think bringing food along.  Celiac or not!  We would probably would not have such a huge obesity problem.  Fast food or processed food has surely contributed to a nation of fat people which was rare sight when I was a kid.  Start a new trend!  Be cool!  ? I reeled in my hubby as a result of a picnic lunch!  I do not think I would have landed him with a fast food burger.  ?