Celtic Queen

It's funny because my Uncle called me the other day and said he wanted to send our family some cookies.  Then he thought about me and didn't want to tempt me.  I told him I wouldn't be tempted at all and that I felt so much better gluten free that I wasn't about to ruin that.  I told him hubby and my son would enjoy the cookies.

I don't think he truly got it until he was having Christmas Eve dinner with my cousin, who is also diagnosed.  He said said she explained it all to him in detail about eating gluten free has made such a big difference in her health.  I think a light bulb came on for him.

Personally, I'm still fighting so hard not to get accidentally glutened that I'm not even remotely interested in doing it on purpose.

I would suggest reading Healthier Without Wheat by Stephen Wagnen.  He discusses a lot about how you can test negative for Celiac Disease and still be gluten intolerant.  

Eliminate the gluten and try the diet.  See if it works. Give it a month.  You don't need a prescription to do the diet.  Or a special test.  And if it doesn't work, you aren't out much money. But if it does work, you may have found the answer to a lot of your health problems.  What do you have to lose?

I think sometimes there is a lack of communication between the kitchen staff and wait staff that contributes to the problem too.  And even between management and the staff.  We went to one of my favorite local chains for a hamburger a couple of weeks ago because a friend of mine saw on Facebook that they were doing gluten free burgers now.  When we got to the restaurant and I talked to the waiter about it, he had no clue what I was talking about.  My friend pulled the facebook page up on his phone and showed the waiter.  The waiter asked the chef and the chef knew exactly what he was talking about.  The chef cooked my burger separately from the others and put it on a lettuce "bun."  He was very serious about cross contamination.  The waiter apologized for not knowing about it.  But I couldn't blame him.  It was obvious that management hadn't communicated to all the staff.  It ended up being fine because I got a very delicious burger without getting cross contaminated and the waiter now knows what to do the next time someone orders the gluten free burger.  But it easily could have gone a bad way if I had gotten a waiter that didn't care.  Or a chef that didn't have a clue.

I'd add depression, brain fog, fatigue, apathy and hair loss.

There is no reason whatsoever that a GI specialist should not be able to perform an endoscopy correctly. This is 2011, and this is barbaric.

I totally agree.  My GI was an arrogant idiot more interested in taking my money than helping me.  I told him during our initial appointment that I hadn't been eating gluten for 4 weeks.  He still ordered a colonoscopy, endoscopy, and biopsy.  At that point I hadn't found all the intelligent people on this board who would tell me that it wouldn't do any good to have all those tests run since I'd been off the gluten.  So when the tests were run, I'd been off of it for 6 weeks.  And of course, everything came back fine.  And I don't even know how many samples he took.

When the nurse called to tell me that the biopsies were fine, I asked about a follow up visit.  She said, "But everything is fine."  And I explained about not eating wheat before the test and that I still had a positive Celiac panel.  She said she would check with him and would get back to me. She even metioned that the whole office had attended a presentation about gluten intolerance the day before and how she had learned so much.

Another nurse called back and said the doctor didn't want to see me again.  I explained to her, yet again, about the positive blood work and how the diet affected the test.  I said that I would have gone back on gluten if I had known it was going to affect the test.  She mentioned that they wouldn't have allowed that because that would be cruel.  Okay, how else are you going to diagnose me again.

Twice I tried to get the doctor of follow up with me and twice he refused.  Now I'm out $1,100 of my money for a test that is basically worthless.  I can't even begin to tell you how mad that made me.  I did make sure to tell my GP, the one who had referred me to this idiot.  She was pretty upset.  So maybe I helped someone from her practice getting stuck with this guy in the future.

I've learned so much more from everyone here on the board than I have from any of my doctors.

And while your analogy is like comparing apple and oranges in many respects (and for the record, it is Asperger's Syndrome, not disease - and note the correct spelling - every effort at making it sound less like like a sandwich made of rear ends is a plus,) the Asperger's community is currently fighting against the inclusion of Asperger's Syndrome into the manual as simply "Autism."

Katrala, I apologize for my typo.  Usually I'm a better speller than that and I certainly didn't mean to offend anyone with Asperger's Syndrome or Autism.  My point with the comparison is that at this time Asperger's is considered part of a spectrum of Autism, which acknowledges that there are people with varying degrees of issues, from mild symptoms that still allow them to live a normal life to very severly autistic people who have more severe difficulties.

But I still stand by my statement that I think Celiac is just a small part of the whole gluten intolerance spectrum and that doctors are only treating one small part of the problem, mainly the gastro issues.   Many people get treated because of gastro issues, but for many of us there are other issues that are just as severe.  Just yesterday someone posted on this board that they felt suicidal as a result of their gluten issues.  To me that is a much more serious issue than having constipation or bloating.

From my perspective you seem to think of this as a very black and white issue.  Either you have Celiac or you don't.  I'm thinking of it more as a shades of gray kind of issue.  I guess we'll just have to agree to disagree.  

I feel your pain.  My best friend has been diagnosed with fibromyalgia and also has thyroid issues.  She's always exhausted and her muscles constantly ache.  She has poor memory and brain fog.  Plus, I believe she has gluten ataxia.  And she's had gastro problems for years related to panic attacks.  In short, she has a lot of symptoms of a classic Celiac.

She's been to a host of doctors - gp, gi, ortho, rhumetologist, etc.  Not one has mentioned Celiac.

I've told her about the diet.  She knows I'm totally off gluten.  I've explained to her how many of her symptoms could be related to the gluten.  I told her that she could probably get off a lot of her medicine if she was on the diet.  Heck, I even sent her a powerpoint with all this info.  I've tried.  And she's "looking into it."  But I know she won't do anything about it.  It frustrates the h*ll out of me.  I know she could feel so much better.  But I also know she won't do it.  

This morning I decided I'm going to pray for her.  I'm frustrated cause I can't make her do anything about this.  But I can pray.  It's the one things I can do.

Gluten intolerance / sensitivity and celiac disease are different things.

I disagree with this.  Personally, I think Celiac Disease is one part of Gluten Intolerance spectrum.  To use an analogy, I think it compares to Asberger's Disease being part of the Autism spectrum.

It frustrates me that doctors don't take Celiac Disease seriously, and they don't even begin to have a clue about gluten intolerance, which is just as serious.  And I personally hate the label "Gluten Intolerant."  It makes it sound like a minor problem and not the serious issue it is.  People (including doctors) seem to take it more seriously if you say you have Celiac Disease instead.  "Disease" sounds much more serious than "Intolerance."  But all the problems with Gluten Intolerance can be just as harmful as Celiac Disease.

Like the rest of you guys, I'm having a hard time with the holidays coming up.  There's lots of tempting gluteney food everywhere that I can't eat.  And navigating the food at all the social events is like walking through a mine field.

But in the interest of being a "glass is half full" kind of girl, I was thinking about things I actually liked about having Celiac Disease.  Things that made me thankful this holiday season.  Here's a few I came up with:

1.  My coupon clipping is much faster now, since I can't buy half the stuff in the insert.  
2.  My hair is slowly starting to grow back in.  Yay!
3.  I don't have to worry about putting on holiday pounds since I can't eat a lot of the treats that will be around.
4.  I'm eating more fruits and veggies.
5.  My friends and family have been so kind and supportive.

So, what are the things that Celiac Disease makes you grateful for this Thanksgiving?

Paying twice as much for a box of gluten free bisquick that's 2/3 the size of a regular box.

Worrying about what I'm going to eat at social event or if I can eat anything at all.

Having to become a high-maintenance person when I go out to eat.  I'm not that way at all.  It's hard having to be particular about things.

I don't know why it's so drawn out, but I have the same problem.  It takes me 10 days to 2 weeks to get it all out of my system.  That's more frustrating to me than staying on the diet.  I have no problem not eating gluten, but I get so frustrated when I get glutened by accident and know that's two weeks of my life that I'll feel bad.

Maybe that's how long it takes for it to get out of your intestines and blood?

My 5 year old son is always asking me if stuff I'm eating is "fluten gree."  It's so cute that he cares, even if he can't pronounce it right.

If I had a dollar for every time I heard someone say, "I could never give up eating bread," I'd have the bill for my colonoscopy paid off

I've started carrying a little "care package" in my purse with gluten free condiments and a lara bar.  That way if I'm stuck somewhere I know I'll at least have one gluten-free thing to eat.

Perhaps a part of what makes the gluten-free diet a success is the willingness of the patient to DO something, and not have the "pill" mentality.

I so totally agree with this.  I also think what makes the diet successful are people who are willing to listen to more than just their doctors.  People who are willing to be advocates for their own health and do their own research into causes for their problems.

I have a friend with fibro who has all the classic signs of ataxia, has brain fog, has had panic attacks for years, and has digestive issues.  I've told her about the gluten-free diet and the link to fibro.  She's "investigating it."  But her doctors haven't mentioned anything to her about gluten sensitivity, so I don't know how seriously she's taking it.  I just want to shake her and say, "This could fix a lot of your problems.  Give it a try."  But it's so much easier to just pop a pill than to think about what you're putting into your mouth every day.

I saw my doctor this morning and she asked me if I was having any problems sticking to the diet.  I told her nope.  I felt so much better being off the gluten that I didn't want to touch the stuff ever again.  I had absolutely no desire whatsoever to cheat on my diet.

Could the marijuana be cross contaminated with gluten?  For instance, if you're buying it from someone else (as opposed to growing your own), could they be growing it near a wheat field or could they be putting it on a counter where they prepare sandwiches or other things with gluten?  

Mind you, I'm not advocating that you grow your own, which may or may not be legal depending on the state you live in.