Faith Restored, Sort Of...

[lushgreen]

I feel particularly obligated to share this, since I had sounded the false alarm about testing at CDC (shame-faced). My doc called and clarified - apparently the discharge nurse had completely misinformed me. THe doc did indeed do 8-10 biopsies from TWO sites - the stomach and the duodenum. The stomach because she wanted to check for H. pylori (all clear). She termed the biopsy "inconclusive" - while there is no blunting of the villi, there is intraepithelial lymphocystosis. And because I have so many other conditions that fit the picture of celiac, she agreed when I asked her if this was a "preceliac condition". The intestinal damage was consistent with grade I of the Marsh classification. She is recommending going gluten-free.

This is an interesting correspondence with my Enterolab results which show that there is gluten sensitivity (with antigliadin and Ttg antibodies), mild malabsorption and gluten sensitivity genes (but not celiac ones) (and also casein intolerance). I told my doc about these results and she was curious. I offered to mail her the results as well as other information from Fine's site. She said she would pass it on to Green...

But hmm, I'm wondering (yes, I do need a label as I talk to family, friends, my boss, waitstaff, etc.), what do I call myself? Gluten sensitive? Non-celiac gluten intolerant? Almost celiac?

At any rate, after a year of pursuing this, it feels strangely anticlimatic - maybe it will sink in further over the next couple of days. I just bought my first loaf of rice almond bread and got San-J's wheat-free tamari sauce and so I guess I am now officially initiated...

[Guest nini]

stick with Gluten Intolerant! That is the simplest explanation...

[CMCM]

Keep it simple! No one will know what celiac disease is, and the "Disease" word frightens people off. I just say gluten sensitive, or because most people don't even know what gluten is, to further simplify I just say I can't eat anything with wheat in it.

[floridanative]

The only thing I'd add is that when dining out - if you choose to do so - I would make sure whoever you are talking to about your meal/prep knows you are not on a fad diet but indeed you will get sick if you ingest gluten, even in tiny amounts. If someone thinks you're going gluten free 'just because' (like some healthy people are doing now) they won't be worried if your food is handled with care. I try not to scare the restaurant staff but I don't make light of my condition, just so they know it's real and my health is in their hands at the moment.

Welcome and good luck! Remember there is a learning curve to this lifestyle which is about a year. Don't get frustrated that you can't learn everything in the first month. I was hard on myself and wanted to know everything about going gluten free like yesterday. It does get easier with time and one day you'll find checking labels and asking about ingredients is second nature and just part of who you are. It won't be such a chore eventually.

[penguin]

I explain Celiac Disease to all of my family, but if I'm just out with friends or work people, I say I'm allergic to wheat. Not to offend, but "gluten intolerant" or "gluten sensitive" sounds kind of wishy-washy and may not be taken as seriously.

I know I'm not allergic to wheat, as it were, but if people press further, I go into the Celiac spiel. Celiac and gluten intolerance aren't allergies, but in many ways, they behave like one.

[Nancym]

A lot of people have absolutely no clue what gluten is so if they seem clueless I tell them I have an allergy to certain grains.

[mmaccartney]

For most people, I just tell them that I have food allergies. This keeps it short, and simple for them to understand.

Some people want to know more, then I tell them about celiac.

[lushgreen]

Thanks for all the very useful tips, all. In my two and a half weeks of living gluten-free, I've found myself saying "wheat allergy", "gluten intolerance" and "celiac disease" depending on the company and their clued-in-ness (which I assess very quickly!).

Unfortunately I have not yet risen to the challenge of waiters. I did go out once with a large group and balked - I made sure nothing had wheat in it but did not go the extra bit to make sure nothing was fried in the same oil or ensure about other cross-contamination. But no ill effects yet. More guts next time!

Thanks for the welcome floridanative. And for the warning to take it slow. I feel like I've just mounted the learning curve.