Another person diagnosed

[nancw]

My MIL's friend's daughter was sick with a "mystery" illness since last July. Everytime my MIL would describe what this girl was going through I would tell her that it sounded like Celiac and the girl should be tested. Lo and behold, after multiple doctors and lots of heartbreak she was diagnosed Celiac this week. The week before her diagnosis I emailed this girl (post-college age) and told her I would be happy to help her transition if she did end up with a Celiac diagnosis. As she still didn't know if she has Celiac or not she didn't have too much to say except that she might check back with me soon. Hopefully she will contact me again, and maybe even end up here!

Makes me remember how scared I was when no one could figure out what was wrong with me. Also makes me wish I had been more pushy to get in touch with this girl last year. Oh well...we aren't doctors, just passionate about spreading the word.
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Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[cruelshoes]

I hope she takes you up on your offer to help. I trust you told her about the best celiac support group on the web?

I am always a little hesitant to suggest CD to people who are having mystery medical problems. Too often I have gotten the eye roll and "oh you just think gluten has to do with everything" line. I still mention it, but don't push it too much when I get the brush off.
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-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[aklap]

Hey Nance - well done in offering up your support and correctly guessing the medically mystery disease!

I agree with Colleen, sometimes you do get the eye rolls and "everything is gluten" comments. I try to restrain myself. I will casually mention a few gluten connections, but don't push it too much.

The way I see it...you tell your story...if they want to learn from it..good deal.

I had an interesting experience along these same lines. Recently a friend of ours [I'll call her Jane] called me about helping her niece. The niece had just been dx'ed with CD.

Jane knew I was GF. Her and her hubby are part of group that would get together and play ping pong. We'd go to each others houses and the guys would play ping pong. The girls would do...whatever girls do when guys aren't around. We'd always bring/have GF food and of course they always ate it instead of their own food! That was cool cuz I always brought enough and it reinforced that fact that GF food IS GOOD!

Anyway... Jane asked if I could pass on some info to her niece [yes this place was top of the list ]. I asked if anyone else in her family had gotten tested. I told her about the genetics. I told her symptoms or lack there of, is not always an indicator. I said unexplained anemia can be a huge red flag if you know what to look for. She said "Al, it's funny you mention unexplained anemia - I've had that for years...as well as gastro problems that I never talk about. Oh my gosh!". I urged her to get tested. Since she's in the medical field, she took my urging seriously.

She got a bunch of testing done, CD panel one of them - it was positive. She had an EGD - low and behold - positive for CD.

"Jane's" dx was the last kick in the pants we needed to move forward in forming a local support group. We've talked about it for 4-5 years now...it's time for action!

Y'all keep Spreadin' the Word!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[nancw]

[HadassahSukkot]

that's awesome you guys were able to help others like that! It's such a great feeling when you know you aren't alone and someone can help you make that transition, boot-camp it through and have recipes to start out with.

Holler my way if she needs a plethora of GF sites to navigate for recipes 'just like before'.. I have so many I'm still sorting through all the GF blogs (no joke.. I've saved recipes from at least 12 and have about 30 more to sort through and see if they're worth saving and checking back on from time to time. The ones I've gone through completely I set myself up to receive an auto-feed on when they post something new so I can add variety (and keep it nutritious!) to our menu.

I've been eating things as of late that I haven' thad in years, and some I didn't think you could make GF.


Here is the best place to start IMHO... right with everyone else who's BTDT, marked all their TNT recipes and get started right in bootcamp.
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[ostrich]