Support?

[Kaj242]

I'm currently going through healing myself and getting my 3 yr old daughter tested, and feel drawn to use my professional training and experience to reach out to others. I'm a psychotherapist / substance abuse therapist currently at home with my two littles and like to ask everyone here what kinds services they'd like to see available to them? Those who have been through this journey what is something you wish existed? I feel passionate about helping others and am interested in suggestions. 

Thanks!

[Positron]

On ‎12‎/‎18‎/‎2015 at 11:22 AM, Kaj242 said:

I'm currently going through healing myself and getting my 3 yr old daughter tested, and feel drawn to use my professional training and experience to reach out to others. I'm a psychotherapist / substance abuse therapist currently at home with my two littles and like to ask everyone here what kinds services they'd like to see available to them? Those who have been through this journey what is something you wish existed? I feel passionate about helping others and am interested in suggestions. 

Thanks!

Medical doctors need to stop pretending that they have never heard of gluten sensitivity until after they do 3 months and hundreds of thousands of dollars of medical test on suffering individuals.  They treat us like cash cows, my doctor told me that gluten issues could not cause intestinal bleeding, so that he could run more test on me, however I never showed up at his lying office on the day he wanted to scope me.  I am free of symptoms now because I treated myself, like most others had to do.  There should actually be laws preventing unneeded medical testing of people which is insurance fraud.

[ravenwoodglass]

I would have liked to have had a support group in my area.  I went over 45 years undiagnosed. The last 15 were hell on earth and left me unable to travel the hour or so I would have had to go to meet with others like myself. You may want to check with your local hospital and see if you can get one going.

[Cris Lee]

I would like support since every social activity involves food.  At work there has been numerous potlucks that I can't attend.  Being in the same room breathing the fumes from gluten dishes can make me sick.  I couldn't even attend the holiday party.  My reactions are so bad that I take every precaution.  Would like a support group,  online would work,  to just talk, vent and figure out how to live in a world with so much gluten  in it.

[bartfull]

Hi Chris. Are you newly diagnosed? How long have you been gluten-free? I ask because you can't get sick from breathing gluten "fumes", although if you went into a bakery or the kitchen of someone who had just baked you CAN get sick from flour dust in the air.

But if you are newly gluten-free, you can feel ill for many reasons or no good reason at all for a while. It's not unusual for folks to have a couple of good days followed by a bad day or two while we are healing. Perhaps the smell of all those rich foods turned your stomach the same way it might turn the stomach of someone who had just gotten over a stomach bug. But I promise, you can't get GLUTENED by smelling food.

[Cris Lee]

I have been  gluten-free for 3 years.  I know how I feel  and what the symptoms of a flare-up are for me.  I'm shocked cause I never thought in this place I would be treated as badly as the everybody else I talk to who isn't gluten-free.   It is not all in my head.  But it doesn't matter.   This is why it is better for me to go this journey alone. 

[Gemini]

6 minutes ago, Cris Lee said:

I have been  gluten-free for 3 years.  I know how I feel  and what the symptoms of a flare-up are for me.  I'm shocked cause I never thought in this place I would be treated as badly as the everybody else I talk to who isn't gluten-free.   It is not all in my head.  But it doesn't matter.   This is why it is better for me to go this journey alone. 

Cris......what Bartfull stated is 100% correct.  You cannot initiate the autoimmune response by smelling food, it has to enter the GI tract and that means it starts at your mouth. But let me say something else here before you become offended over something that should not offend you.  I know exactly how you feel because I have the same "reaction" to strong gluten smells, most notably pizza.  It gives me a headache and I start to feel nauseous, which were some of the many symptoms I had as an undiagnosed Celiac.

I have learned over the almost 11 years I have been gluten-free that those are psychosomatic reactions. There is no shame in having one and it does not mean it's all in your head. I believe it is your mind's way of protecting you against food that really will make you sick.  I have HUGE reactions when glutened, both neuro and gastric, so when I encounter a strong smell like pizza, it gaks me and I have to leave. But in no way is it a true Celiac reaction because if it were, none of us would ever completely heal. We would have to shut ourselves away from the smells of life out there. This is one of those things that our subconscious is in control of, at least I think it is.

I work for a living and I go to all our company parties and gatherings and, while it is not optimal because you cannot eat the food that everyone else is eating, I have learned I can do it without a problem because I do not want to shut myself away from humanity.  I move away from the food whose smells bother me but I have never had to leave the room at a work party. They, at least, have the food in one small room and the party in another, which works out much better for me.

Do not shut yourself away from life because you have Celiac. You sound angry about it, but remember, this does not define us. It may help to talk to someone about your fears and aggravations about having Celiac.  I know you won't like me saying that but just give it some thought so you can rejoin the human race and live like everyone else does and enjoy yourself in a social setting. It matters to your long term well being. 

Best wishes to you!  

[bartfull]

Chris, if you're still here, I'm sorry if I offended you, but I only told the truth. Knowledge is power as they say. And if you read Gemini's post you will see that you aren't the only one who gets sick from the smell. Neither she nor I said anything negative about you personally. All we said was that the smell of gluten foods can't cause a celiac reaction, even though they can make you feel sick. That's just a fact, not an accusation.

[Kaj242]

Thank you for some ideas,I am a little late to seeing these suggestions. I do agree social situations whither newly celiac/gluten sensitive or for years is not fun. Let's be real. It's different for everyone how much it sucks since we all are coming from different places. I'm Italian and every holiday, gathering, and even brief visit  has food. It's like the main attraction and lots of gluten. 

What would everyone think about online support services, in a group setting? Using Skype?

[mommida]

I'm going to chime in.  Some people are kitchen wipey freaks.  The problem they are using the same wash clothe and wiping everything it.  They are just spreading gluten and germs everywhere.  It may appear clean but it is not.

This happens at my sister-in-laws house.  Cross contamination from not even using soap to wash and clean things in between.  (I saw the punch ladle go from the punch bowl- to the turkey juices- under a 1.003 second rinse at the sink ((just water)) - and back into the punch bowl.)  No wonder why I was getting ill every function at their house.  (even just drinking coffee and bringing my own food. using any utensil or plate was enough cross contamination.)  Household where people eat food everywhere but the kitchen table, would also be an issue.  Letting toddlers run around with food is also a big problem.

So like Cris, it was almost as if it was breathed in.

This site was one of the best resources ever.   You get some pretty good advice from people that have lived through this.   There are now apps for finding product lists, eating places, gluten free drugs.