Annoyed

[BlessedMommy]

Just a random vent, I'm tired of seeing stuff about the gluten free "fad diet."

 

I'm tired of the ridiculous assertions that it's a black and white deal, either you have celiac (diagnosed through a blood test and biopsy) or you're a faker. Because apparently all the medical tests are foolproof and your doctor will always run them promptly if you're showing any signs of celiac or DH. The doctors will ALWAYS figure out the cause of your problem without delay so that you will never have to experiment yourself. And no doctor will tell you that "if you will just go on digestive enzymes, you'll be fine, forget doing any gluten antibody blood testing."

 

And if you say that you are too sensitive to eating gluten to survive trialing it for 3 months to get a DX, you're a faker too. Because of course, EVERYBODY (without a celiac diagnosis) can survive eating gluten for 3 months. 

 

Apparently, some of us who are gluten free without a diagnosis are wanting attention and our lives are too boring as is.

 

Because I apparently made up my whole itching day and night, in pain constantly, needed category C steroids while pregnant thing. Or maybe my neurological complications were a fad. Perhaps ministrokes (TIA's) are now trendy. Perhaps I imagined the whole evening of February 13, 2010 and the ER part was just a mirage.

 

I just need to stop reading stuff, that stuff is just too annoying!

[IrishHeart]

I do not think a single person on c.com  would ever say such a thing to anyone.

Obviously, whoever wrote that stuff has no knowledge of NCGS as a real medical condition recognized by celiac experts.

There are many people on here with NCGS and no "firm piece of paper diagnosis" and nearly all of us had a difficult path getting diagnosed, 

so yes! stop "reading things" elsewhere. 

The internet is full of people and opinions. It's a huge wasteland of endless drivel. 

And finally, learn to not give a flying fig about what anything says about your approach to taking care of your health.

It's nobody's business, frankly.

I, too, think the G F diet is a "fad" for SOME people and when they tire of it, they will revert to eating their gluteny goodies once more.

But, those people do not have a medical necessity for being G F. They will embrace the next diet craze, too. The "eat all the pineapple

and liver you can diet" and lose 15 lbs in a week. Coming up next, on Dr. OOze!".

Learn to laugh at those things because you're wasting your time getting mad over it, hon.

Be happy...You've got a long, healthy life ahead of you.

IMHO, If the doctor felt the gluten-free trial caused your TIA, he should be able to say you have celiac.

 

Just my two cents, but then again, I am just another person on the internet.   (but I support you 100%)    

[BlessedMommy]

Yes, this info was definitely not on this site!

 

This site has been nothing but supportive, thank goodness!

[BlessedMommy]

I guess, what it is, is I really and truly hate not having a DX. I really feel annoyed that circumstances took that chance away from me. And when I read articles like that, it just adds to that annoyance.

 

When they come up with celiac tests that don't involve gluten challenges, I'll probably be one of the first in line to take them!

[sarahdea]

I feel your pain!!! No one in my workplace/circle of friends really knows what 'gluten' is, much less an intolerance for it or Celiac or anything.

 

To add to that, I was the "Wellness Director" at work for 3 years, and my healthy eating habits have likely led my co-workers to believe I am just on a kick. (and I really can't blame them there)

 

However, I have told all that care to ask, that I would NEVER on-purpose give up bread, pizza, cake. Then I explain the whole GI autoimmune response to them. THEN I remind them how I wound up in the Emergency Room over it. Annd sometimes they STILL don't get it. Grrr.

 

As far as "trendy" articles go...

 

 this is my new favorite quote from Warrior Princess:  "The internet is full of people and opinions. It's a huge wasteland of endless drivel."  AMEN.

 

I am really glad for this particular site tho!

[nvsmom]

Hugs.

Just lie.... Or play with words like "I was tested and it looks like I have celiac disease." All that is entirely true.

Even if you do have the piece of paper with a diagnosis, it won't change the fact that most people don't understand the disease and will "pooh pooh" your dietary needs. No matter what, people will still stick their nose in where it doesn't belong. Sigh.

As for the trendy thing? I like to agree with people that I am very with it and cutting edge. That usually gets a laugh and shuts it down sooner rather than later.

Hang in there.

[NoGlutenCooties]

I completely agree - VERY annoying.  I look at it like this... We're right.  We're getting healthy.  They're ignorant.  One day Karma will get them, one way or another.  In the meantime, we're getting healthy.  We win.  So fooey on them... and their gluteny, foggy, ill-thinking brains.

[BlessedMommy]

LOL!

 

It is true that even if you have a biopsy proven celiac DX, there's plenty of misinformed people out there. I'm trying to crack down harder on possible CC issues and some people probably already think that I'm insane as is. LOL! That's why I get frustrated and wish that I had a DX, but again, some people have told me that the DX won't solve misunderstanding problems anyway.

 

I think that when I go to family's house for a day or a weekend, I'm just going to pack my own box of dedicated tools (cutting board, pan, utensils, etc.) and do my own thing, trying to politely turn down food that they make. If they really want to know more, I'll talk a bit about how scary it was to have a TIA in my 20's and talk about the deteriorating health that runs in my family. (If I was a betting person, I would bet money that my mom and my sister both have un'dx'ed celiac)

[BlessedMommy]

  On 3/24/2014 at 1:40 PM, IrishHeart said:

Be happy...You've got a long, healthy life ahead of you.

I feel fortunate in that I figured out that I couldn't have gluten in my 20's. My mom and sister probably should both be gluten-free and have extremely deteriorated health (low bone density, tooth problems, all manner of body systems out of whack, chronic fatigue, symptoms after eating gluten, IBS like symptoms, schizophrenia like symptoms, just to name a few) I have no doubt that both of them will have many of those problems permanently. I feel like I've been given a new lease on life in a way, because my health took a downward spin in my early 20's and I'm now in my 30's and doing quite well with fairly good health, after 4 years off gluten. So, really, DX or no DX, I should be very thankful that I figured out gluten was poison to my body before I had permanent health problems from eating it.

 

I have talked to my mom about getting celiac screening, because it could not only help her but also put another piece of the puzzle for me, but she doesn't have good insurance right now. She says that she has suspected celiac for years, though.

 

Perhaps genetic testing would help put together more of the pieces for my family.

 

I really long for the day when celiac testing is inexpensive, non-invasive, not dependent on gluten consumption and readily available to every person who needs it.

[BlessedMommy]

I wonder if the severity of my reaction on the gluten trial was because I overdid the gluten. I wanted the best chance of an accurate result, so I ate a lot of gluten and had it at every meal basically. No one told me that 1 slice of bread a day would work.

 

I still am not going to trial smaller amounts, though, just not worth the risk of another TIA, since I really don't know what would happen the next time around.

 

And looking back to see the photos of how I looked when I was on gluten was fairly shocking. Here is one of my pre-gluten-free photos, when my oldest daughter was a baby.

 

Open Original Shared Link

[BlessedMommy]

And here is a photo taken when my 3rd child was a baby, so taken roughly about 6 years after the above photo and a couple of years after I quit gluten. What a contrast!

 

Open Original Shared Link

[SkyBlue4]

Wow, look at the difference in your eyes alone!  

[FruitEnthusiast]

You look so healthy in that second picture! (what a cute baby pic) I agree that what we are doing to feel better now is making us healthier in the long run. We are going to be the healthiest people because we were forced to be.That's the payoff! At least that's what I believe.

 

I was not diagnosed either. Personally I think if you believe you are Celiac, it's your choice to call it that if you want to. You don't have to have a doctors approval to know what your body is telling you... doctors are, let's face it, frequently idiots anyway! I often feel I have a much better idea about what is happening with my own body, and I find many health care professionals to be rigidly stuck on their opinions once they've formed them. They could use some flexibility and the ability to admit when they just don't know the answer! I won't hold my breath waiting for that to happen.

 

I think whether it's Celiac or NCGS, it's still a serious illness and so difficult to recover from. If you think Celiac runs in your family, it sounds all the more likely you are Celiac. In any case say what you believe to be true for you. That was the conscensus of that great conversation recently on here about this, and thank you to whoever started it. It sounded like most of us agreed that what we call it is a personal choice.

[Nikki2777]

If you're being 100% serious about living gluten free, then I don't see anything wrong in saying you have Celiac.  Based on your description, chances are you do, and the tests just aren't sophisticated enough to prove it yet.  The only thing that annoys me is when people publicly claim to have Celiac or Gluten Intolerance and then order 'just a small slice' of cake or pick croutons off a salad at a restaurant.  It makes it hard for the rest of us to be taken seriously.

[BlessedMommy]

Nope, no cake ordering or crouton picking for me! LOL!

[NoGlutenCooties]

On the rare occassion that I eat out I tell the waitress flat out - "I'm not one of those annoying people who order gluten free because they think it's cool.  I will actually get very sick if I get so much as a crumb, so please let the folks in the kitchen know."

[Shell156]

Wow, you look great in the second picture ! I get how that is... I don't have a diagnosis either . My doctor said he "strongly suspects " I have celiac disease.

The most awful thing that ever happened to me was I had gotten serious with this person I thought was the one for me, and one of his friends ( I guess she was having a hard time because she was going through a divorce she didn't want to have ) started telling him and his family that I was making it up for attention and naming all the "attention seeking" things I did ( ie I jumped away when the bread tray was under my nose at a party) .

It was so awful for me because the truth is I would do anything ANYTHING just to be like everyone else and the rest of them who were being so mean behind my back, although my boyfriend at the time informed me of every word they said.

I would never do this again, and I don't know why I did but I was so worried about appearing attention-seeking the next time I saw that woman I ended up being super sick for weeks because I didn't want to appear "picky" . She had of course brought trays full of crumbly sugar cookies to the party . One of the toddlers stuck her hands in my mouth after eating

It was so horrible . Couldn't win either way