If Don't Have Official Diagnosis-just Diet What Do You Call Dc's Condition?

[Hopefulmama]

We have seen great improvement with DD since going gluten-free. We have not had her tested since we can't seem to get a clear answer as to whether the tests are accurate and how long you need to be glutened, etc. to be tested. We don't want to put her or ourselves through all of that right now.

Her doctor does think Celiac is a major possibility since she has responded so well to the diet.

So if you don't have an "official" diagnosis, what do you call your childs condition-or how do you describe it to others? Do you say they have Celiac or they are gluten intolerant? I want people to realize the seriousness of the condition so they don't give DD food she shouldn't have. At the same time, I don't want to label her with a disease that she may not have.

[kbtoyssni]

I'm self diagnosed (negative blood test after two weeks of mostly gluten-free). I tell people I have celiac. I figure the treatment is the same, and I am just as strict with my diet as a true celiac should be. If I were running around saying I'm celiac and not worrying about CC, that would be a disservice to the celiac community. Plus I feel that gluten intolerance is a spectrum and celiac is the later stages when there's a lot of intestinal damage.

[jayhawkmom]

If it looks like Celiac and responds like Celiac, I'd say... it's Celiac.

I am not dx'd with celiac disease - but I AM dx with gluten intolerance. That just doesn't carry the same weight, and I HAVE to be gluten free. I have to make people understand that it's not a choice.

Quite personally, I don't discuss my dietary restrictions with many. And, those I do discuss it with (servers, chefs, restaurant managers) really don't need to be concerned with whether or not I have a "full diagnosis." I can't eat wheat, barley, rye, or oats - and that's all there is to it. My degree of affliction isn't up for discussion or debate.

Edited to add - when it's my child.... I make EXTRA use of the word "CELIAC" so that those who I'm discussing it with REALLY hear me, and understand that she CAN NOT HAVE wbro. And, I'll also add, we've been at this almost 2 years...and I'm just starting to feel comfortable enough to really "push the issue" with people who don't seem to get it, or don't seem to completely hear what I'm telling them with regards to what my child can and can't eat.

[CCM]

I feel the same way. My blood tests and biopsies were negative, as were allergy tests, but the diet is right on for me. My doctor uses the term gluten sensitive because the "true" diagnosis requires a positive test. I agree that it is really a spectrum we are all on. Who knows...in five years, being gluten sensitive might just be officially recognized as early celiac disease.

[dbmamaz]

I think it was someone on this forum who said, if you tell people, well I have a sensitivity to gluten and an allergy to this and that but the test was inconclusive and blah blah blah . . . you lose people or they think your a hypocondriac. If you just say 'celiac' either they understand ur restrictions or, if they dont, they still will believe its real.

Being 'labeled' with a disease isnt really that big a deal. Trust me, when my son was dx'd with PDD-NOS (milder than aspergers) and bipolar, it was really hard - but in the end, just telling ppl (tho i say aspergers cuz no one has heard of pdd-nos) really helps - they are more understanding and helpful than if I try to pretend he's normal ( cuz then everyone just thinks hes an awful kid and i'm an awful mom!)

Whats most important is that you arent embarressed about it. You have to be the warrior to fight for what's best for your child, not piddling over words and labels.

[Worriedtodeath]

I tell everyone Celiac DISEASE because it carried more weight and only the worst people will argue with me. Other wise, if I explain they are intolerant as we did to some family and then it is assumed they can have small amounts of stuff because that isn't very serious or life threatening. Some are intolerant to wheat and have spent trying to get my kids to eat rice krispies and scrape apple pie filling out of the crust to eat it. Even though we haven't been at this long, I've all ready noticed people pick up on disease or "allergy like peanuts" way better than they do intolerant. I go with the one that produces the result I need - people terrified to feed my kids wrbo for fear of causing a problem to them. I hate making people feel that way but otherwise no one seems to take it seriously that they can't eat the stuff. After all if you are intolerant than a little bit doesn't hurt right??? that's the attitude I get when I use intolerant.

And in five years my kids bloodwork adn the baby's biopsy may very well be considered early stage Celiac. I mean come on ,, everything else has an early stage, why is Celiac an end stage dix only?

Stacie