Advocating For Yourself

[Steph1]

I want to ask how people got used to advocating for themselves with friends, family, etc.  It sounds like a weird question, but I have had social anxiety and depression since I was young, which makes it hard for me.  I am afraid people will think I am lying or just being my normal crazy self.  The ironic thing is that being gluten-free makes my crazies go down to a normal level.  I have no dx, just stumbled upon realization that I am either celiac or intolerant through a diet.  So am I even welcome to post here?  This whole thing makes me feel like such an inconvenience.  Sorry for the rant.

[RMJ]

I'm not good at advocating for myself, but since no one else has replied yet I wanted to say, YES you are welcome to post here!

[cyclinglady]

Welcome! Anyone can post who has an interest in celiac disease or is NCGI (non-celiac gluten intolerance). It is a holiday weekend here in the states, so folks are not responding quickly. I am formally diagnosed, but my husband is not. He has bee gluten-free for 13 years. I am still a newbie at one year.

Read the newbie thread for tips and NEVER stop advocating for yourself!

[GF Lover]

In my case, no advocating was needed.  I went from a disabled miserable in pain shadow of my self and in 2 years I am healthy and happier than I have ever been.  Everytime I saw someone that I hadn't seen for awhile was like OMG.  You look Great?  Then I explain what happened and my diagnosis.  They are shocked.

 

Colleen

[Georgia-guy]

I have no dx, just stumbled upon realization that I am either celiac or intolerant through a diet. So am I even welcome to post here? This whole thing makes me feel like such an inconvenience. Sorry for the rant.

Steph, you are not an inconvenience. There are many ppl on here that are not diagnosed...myself included. So I say welcome to you!

As far as advocating for yourself, celiac is a hard thing to explain, easiest way to say what you can't eat without giving someone a doctorate in nutrition is "I can't eat wheat or grains". I am in the process of getting diagnosed, I've been battling with issues for as long as I can remember and I've had to do plenty of going to specialists myself without referrals, and now I'm demanding blood tests for celiac. It's not easy, especially if you're an adult and you're speaking with either a doctor or someone you've known forever and have to say "I can't eat that burger unless it has no bun". It does get easier with time, and as you start to heal and symptoms go away, others that you are around often will notice a difference. :-)

(I say that last sentence based on convos I have had with others, as I am still eating gluten waiting on a diagnosis)

[LauraTX]

You are definitely welcome to post here!

 

There are many people on here that also do not have a formal diagnosis, but have a glaringly obvious problem with gluten so they are gluten-free for life.  A lot of times when you first mention it, people will encourage you to get diagnosed, but a lot of people will have a hard time going back on gluten for a diagnosis so they have no desire to do it.  Since gluten affects your emotional health, I wouldn't blame you if you had no intention of going back on gluten just for a formal diagnosis. 

 

Welcome to the cool gluten-free kids club

[Steph1]

Thank you everyone.  I do feel a little better about it now.  Every few months I keep trying to go back on grains bc I think I must be nuts, but I get sick.  Every system of my body is affected.  I am finally ready to say that I am done.  A dx would be nice, though.  I'm a single mom who works full time.  I can't get sick for 6 weeks.  Plus I honestly lose it.  My newest symptoms were uti symptoms, neuropathy and muscle twitching.  I just feel like it will be too awful to deal with all the symptoms for so long.

[Georgia-guy]

Steph,

I have several friends who are single moms, and I watch them struggle making ends meet. So I can understand your being hesitant to do a gluten challenge and be sick for 6 weeks. I'm also going to assume based on your statement that your symptoms get better when you are off gluten. (Can't remember the rest of this thread, and I'm in too much of a brain fog and now pain starting to go read it and understand it.) If I were in your shoes, I would almost say forget the Dx right now, and maybe revisit it later, but go gluten free. HOWEVER, I have to ask, have you looked at getting your child(ren) tested? I know from personal experience that a lot of doctors are less likely to run celiac tests on children without a family Dx history of celiac. I can imagine the sacrifices you make for your child(ren), but I dare say, isn't this sacrifice worth it to some extent? To have a Dx, so they can be tested, and they can have a better chance of getting Dx'ed as early as possible?

***I am in no way trying to guilt trip you, or make you feel like a bad parent. Like I said, I often see the struggles of being a single mom. I'm just trying to get your mind going on weighing the whole situation. Please do not get offended.***

[Questore]

I want to ask how people got used to advocating for themselves with friends, family, etc.  It sounds like a weird question, but I have had social anxiety and depression since I was young, which makes it hard for me.  I am afraid people will think I am lying or just being my normal crazy self.  The ironic thing is that being gluten-free makes my crazies go down to a normal level.  I have no dx, just stumbled upon realization that I am either celiac or intolerant through a diet.  So am I even welcome to post here?  This whole thing makes me feel like such an inconvenience.  Sorry for the rant.

 

I am glad to have you!  I am not diagnosed yet...I am older and alone, and it hurts no one if I do not get diagnosed...not even me.  But I am gluten-free for 6 days, and it's already worth it.  I can't wait till I get to 6 months to see how much difference it makes.

 

The difficulty for me with advocating for myself is that people do not want to pay attention to what I am actually saying.  They hear the anxiety in my voice, and they rush in to smooth things over, and make me feel better, but I end up not being heard,

 

The oddity of Celiac seems to be that one day, your body decides to recognize the protein in wheat/barley/rye that we call gluten as a poison, and not a nutrient.  The effect is to kill the upper gastrointestinal tract cells...leaving little bits of burned out cells behind.  After a while, the intestines get really spotty, and don't take up nutients well because so many cells have been burned off.

 

Then your brain begins to react, and everything gets out of balance.  No nutrients of one kind or another, and the brain doesn't produce the right hormone here, or make that enzyme there.  Your cortisol spurts, and suddenly, you feel like you should be running from a dragon, and it's just your next door neighbor saying hello.  Or a little boy at the bus stop that picks on you on the way to school.

 

Then other things in your hormones change their levels to react to the cortisol, and then your brain reacts to the hormones, and suddenly stops producing serotonin, and you get depressed.  The downward cycle continues.

 

Less and less nutrient uptake, and less and less for your brain to use to try and run your body, and the worse you feel, and the more anxiety and depression, and then you start to feel all the effects of everything going wrong...your personal version of course..everyone seems to have a slightly different chain of events.

 

But by the time you find all this out, you have been acting touchy and fearful, no matter how hard you try to control it, and the more you try to hide it, the more stress you cause yourself, and adds more cortisol to the cascade of hormones, messing things up even more.

 

People do not understand what is happening to you...they know it's something, but after a while, they just try to say soothing things, and do not take you seriously.  It's bad enough with your friends and family, but when the Doctors do it, they are preventing you from getting well, and they do not know they are doing it. They are busy, and they will write you a script, and smooth over the anxiety and depression with meds, but it all still keeps going.

 

Trying to get anyone to sit still for the entire story, when they have already heard parts of it is darn near impossible.  Until they see the research and the data, they will not hear you very well, and end up making you feel crazy fo being sick...or sick because you are crazy, and you cannot reverse the impression in their minds until you are well.

 

It takes a long time to show people that something changed.  And until they see that you are getting better, or you have a horrendous diagnosis from a Doctor that says CELIAC DISEASE, they will have trouble seeing what the big deal is.  It's only a little flour, after all...it's no big deal...right?  Just 1/24 of a teaspoon of flour will make you suffer...just  tiny pinch of bread...a crouton...a single lousy crushed crouton sprinkled over your salad, and you feel awful for days...and they don't seem to get it.

 

With a diagnosis you have a chance to communicate, but you have to get in people's faces, and get used to being stressed out by standing up to them, and be heard, or make the choice of going silent, and just making all the changes.

 

That's hard for our nerves too...humans need feedback or they feel like they are not seen, not heard, and not real somehow.  We need people...it's built in to the human condition.

 

The simpler the explanation, the better...like "No, thank you, "...or "I don't eat that anymore."  And when they ask why, just say it makes you feel sick. 

 

Don't describe it, don't explain...it does no good. Just stick to your guns, and when you have a diagnosis give them a copy of it, and a few choice printout's from this site...or the University of Chicago, or from your Doctor, if you have a good one...they do exist.  And keep not explaining.  Just say it, and do it.

 

They do not have to understand, although it is nice when they begin to.  They just have to hear you, and accept that gluten is a poison to you.  It's not to everyone...just about 1 in 150 people or so.  And it's genetic...you can't fix it...it won't go away.  Your condition will just keep quiet if you don't mess it up with their "Just one bite won't hurt you!"

 

Keep it simple, and repeat.  If it's your family, repeat it a lot.  Be stubborn.  No you can't just have one bite...one bite is enough to make you sick for a week, or weeks.  Get graphic with your family...it's a poison when it hit's your body...they are lucky, because it burns your intestines like acid....poison....burns.

 

It is, after all the truth.  We just have been too polite about our problems, and look what it gets us...ignored, and shoved to one side by too many people, particularly Doctors.

 

As for the stress in standing up for yourself...it is self defense...it's worth it in the long run...but it sure feels awful sometimes.

 

Don't give up.

 

XXXXX

[BlessedMommy]

You are more than welcome to post here!

 

I do not have a diagnosis and I would not go back on gluten for a million dollars. (neurological complications) No way I would risk a stroke just to get a diagnosis!

 

Instead I'm living happy and healthy and staying gluten free for life. There's many here in a similar boat.

[Steph1]

Thanks again for helping everyone.

 

"isn't this sacrifice worth it to some extent? To have a Dx, so they can be tested, and they can have a better chance of getting Dx'ed as early as possible? " 

 

 

My daughter does have a distended abdomen, gas CONSTANTLY, eczema, mood swings, frequent diarrhea, spots on teeth.  I  tried a gluten challenge with her in mind, but testing was only 10 days later.  Came back negative, took myself back off gluten, but let her keep eating it.  I just recently took her off it, her energy is great and she had a normal bm, which is exciting, lol.  Her dad accidentally gave her oatmeal over the weekend, bad D ever since.  She didn't even make it to the bathroom one of the times.  I feel like it is bad for her, and don't want to essentially poison her for a dx.

 

"Less and less nutrient uptake, and less and less for your brain to use to try and run your body, and the worse you feel, and the more anxiety and depression, and then you start to feel all the effects of everything going wrong.."

 

I do know that my thyroid was out of wack, I had like zero progesterone, and my blood serum for Gaba was in the first percentile, serotonin the 35th, with meds. I know the blood tests for neurotransmitters is questionable, but either way I know the things I've always dealt with.  Oh yeah plus most of my b vitamins were low and some other vitamins too.  I am going back to the naturopathic doctor who tested me for everything the first time.  It's so darn expensive or I would have been back much sooner.  Maybe showing the results to a specialist would help?

 

It just makes me nuts when I eat it, everything gets bad, I really don't know what is best for me to do.

 

I really can't thank everyone enough for giving me an outlet.

[Steph1]

I am not sure why that middle paragraph is highlighted.  It's not a quote

[BlessedMommy]

Unfortunately it's a common dilemma...bring back your symptoms with a vengeance or go un'dx'ed. In my case, I don't really have a choice (gluten challenge could mean a stroke for me), so I'm basically sitting back, living 100% gluten free and eagerly awaiting the day that science comes up with a way to test for celiac without eating gluten. There has already been an invitro gliadin challenge tested (biopsy your tissue and put in a petri dish with gluten basically) so science is hopefully trying to move in that direction.

 

I wish you well in whatever you decide!

[Steph1]

Unfortunately it's a common dilemma...bring back your symptoms with a vengeance or go un'dx'ed. In my case, I don't really have a choice (gluten challenge could mean a stroke for me), so I'm basically sitting back, living 100% gluten free and eagerly awaiting the day that science comes up with a way to test for celiac without eating gluten. There has already been an invitro gliadin challenge tested (biopsy your tissue and put in a petri dish with gluten basically) so science is hopefully trying to move in that direction.

 

I wish you well in whatever you decide!

 

Thank you, Ruth