Do Any Biopsy-positive Celiacs Get Offended When Someone With

[Judyin Philly]

I consider myself gluten intolerant, not Celiac. The reason is that I have two genes for gluten intolerance, and no malabsorbtion issues (from Enterolab). Now, I'm 60 yrs old, and have had symptoms for probably 40 years if not more. You'd think that if I had Celiac that by now there'd be some major damage done, mega malabsorbtion, and would have developed other autoimmune diseases. This has not happened. The worse I've had is fibromyalgia, and that's not a disease, but was the result of my poor immune system struggling with the gluten, corn, and several other food allergens for so long. (By the way, my improved diet has put an end to FM)

hI ART GIRL,

So the enterolab tests for malabsorbtion too.

is that found through the blood work also?

my blood work came back low positive for celiac w/the celiac panel. Have been gluten-free for 16 months but now have malabsorbtion, and alot of auto immune dx'd conditions.

my internist and GI and chrio said if diet works you have it don't worry about the nubers.

so guess just wondered how to find to malasborbtion test

thanks

judy

[emcmaster]

I've not had any tests to determine whether I'm celiac or not, but by my life-changing response to going gluten-free, my naturopath said that that was enough proof to him that I was a Celiac.

I don't have any qualms about calling myself a Celiac - in fact, as far as I'm concerned, celiac and (legitimate) gluten-intolerance are the same thing.

The idea that someone could be snobby about celiac is both laughable and anger-inducing. What a piece of work, that member was.

So sorry you had to deal with that. We here are much friendlier.

[i canary]

I was diagnosed with blood work. I was way too sick to do the "gold standard." I don't worry about what anyone else says or thinks - I have celiac disease. I'm a totally different person now that I am gluten free. There is nothing out there that has gluten in it that could tempt me to eat it.

The doctor that diagnosed me, closed her office in June. Since then I've been to 6-7 (lost count) doctors. They seemed to think less of my diagnosis because I didn't do the gold standard. Hence, the large number of doctor visits. If they are that ignorant then they aren't going to be my doctor. I think I finally find one who is okay. She isn't up as much as I would like about celiac disease, but she listens.

[tarnalberry]

I would be offended if someone was offended by me using the term celiac without a biopsy - it would be quite elitist of them to assume that the term can be used if and only if you have a biopsy, and I hate intended elitism. I do, however, greatly dislike someone using the term, and then being lax about the diet, just like many others have mentioned on this thread.

In general, I'm a hair splitter though, so I tend to say "gluten intolerant" more often than not when referring to myself.

[Nantzie]

This has been a great thread. I'm not surprised at all that everyone here is so supportive. This is an amazing place.

I'm trying to remember all the things people said/asked so I can respond. Someone asked if it was part of a national group or a local one. It was a national one, but I'm not going to mention the name. I'm going to give that group one more chance to be nice, and if they're not, I'm going to call the main group and complain. If that doesn't go well, I'll let you guys know who it was.

I also tend to believe that it's just one person's attitude that I'm running into here, and not the organization itself. If it ends up being the organization's attitude, then I'm okay with blasting them. Because it's not right.

When I called and asked for info on the local group meetings, their first question wasn't how am I feeling, or if I knew of the local places to buy gluten-free stuff. It was "How were you diagnosed?"

It bothers me too when people just peel the toppings off the pizza and eat it. My stepmom I'm pretty sure is celiac, but she found about her "wheat intolerance" because of an elimination diet. I've told her about celiac and she has all of the classic symptoms, but she doesn't want anything to do with more restrictions. Although a lot of her continued health problems may be because she's getting glutened just about every day. It drives me nuts that she won't even look into it. And there she goes eating toppings off of pizza and taking the bun off the burger. Won't even TRY gluten-free.

Oh, and I'm not in the UK, I'm in California. That's terrible that people there with gluten intolerance are running into some of the same roadblocks as we are here. We always thing of the UK as being so much more ahead of things when it comes to celiac.

Amen to the poster who said that ALL people with health problems who are stigmatized and ridiculed and made to feel like they're making it up need support. A lot of my symptoms were neuro. I could barely walk most days. If it weren't for finding out about celiac, my next doctor's appt would have been to discuss getting a handicapped placard for my car, because it was just getting worse.

The worst part of it though was several of my family members thought I was just being a whiner or even outright faking it. I gave birth two times with NO DRUGS. None. I have a high pain tolerance. Less than 24 hours after I had my son, I carried my 19mo daughter out of the hospital. No big deal. No problems. Any kind of pain that >> I << can't handle should be taken seriously. But it wasn't. That was the worst part. Because I'm a touch chick, and to be treated like a weenie and not believed was the worst part of this whole thing.

I think that's why this has stuck in my craw for so long. Not being believed or being treated like I had to qualify for support...? With all that I've been through? Are you nuts?

That's why THIS PLACE is so amazing. Everyone is so open and so willing to believe people at face value. And for every odd, unlisted symptom, there is almost always someone who will say, Hey, me too! I thought I was the only one who had insomnia, nightmares, balance problems, weird non-DH skin reactions, or whatever.

I hope everyone is having a good start to their weekend. We had pizza night thanks to Whole Food's gluten-free Pizza Crusts. Mmm.... Pizza....

Nancy