Jill in Sunnyvale

[Guest guest]

Hi Jill,

If you can, you might consider going to a celiac specialist like

the Celiac clinic at Stanford. They might want you to have the biopsy

etc. to confirm diagnosis, although with DH it might not be necessary.

Personally, I feel that especially if you are reluctant to go on the

diet, absolute confirmation of the diagnosis is necessary, and it's

also important to meet with a doctor that can help you make the

transition. They have a dietician at the Celiac Clinic that would

probably be very helpful.

Not following the gluten free diet can lead to very serious long

term health risks, so the sooner you are able to get on the diet, the

better. However, confirmation of diagnosis usually requires blood

tests to check gluten antibodies- and you have to be eating gluten for

the test to work properly, so maybe the best thing is to get into a

good doctor A.S.A.P.

Being on the gluten free diet is a BIG CHANGE, but there are

gluten free replacements for almost everything that you will be

missing- there are excellent donuts, breads, all kinds of things out

there that I think will surprise you. They may taste different to you

at first- but I make stuff all the time that could pass for the

" gluten versions " . Another thing is, having celiac may encourage you

to try new things you never tried before- like making incredible

chinese food from scratch, or buying interesting things at an Indian

grocery. Potlucks can be tough, depending on the crowd, but my secret

weapon is to bring at least one (maybe several) awesome dishes I know

I can eat, and enjoy them- and also enjoy watching other people

enjoying them. Last time I did this, I brought vegetarian homemade

spring rolls with one peanut sauce and one sweet red chili sauce-

everybody loved them! (And i didn't feel deprived a bit!) Also, there

did turn out to be other stuff I could eat, so i got lots of stuff to

eat and enjoy.

Best wishes and take care! I think support early on is really

important.. You don't have to figure this all out on your own- there

are lots of great online support groups online, and a good clinic in

our area. Might as well take advantage of them. *hugs*

-

>

> Hi,

> My name is Jill and I live in Sunnyvale. I have just been

diagnosed with dermatitis herpetiformis, which is a skin disorder

related to celiac. I have suffered from it for years, and was

misdiagnosed by doctors (they all thought it was eczema). Autoimmune

disorders run in my family though, I have a cousin with Lou Gherigs,

aunt with lupus, and another aunt who was just diagnosed with celiac

....I myself have autoimmune hypothyroidism)

>

> My husband and I had tried for 3 years to get pregnant, but had

several miscarriages. When my aunt was diagnosed with celiac, she

told me one of the symptoms was multiple miscarriages, so I began to

look into it more thoroughly. Well, last fall, I found out I was

pregnant, and during that time my symptoms subsided, so I forgot about

it. In August I gave birth to a healthy boy, but 5 days afterwards,

completely broke out in a itchy rash. I went to the dermatologist and

demanded to be tested, and sure enough, it was positive for DH.

>

> I have some questions, perhaps some of you can help me with.

> I am pretty sure, but since I have DH, does that mean I

automatically have celiac? Do I need further testing, or should I go

on the diet?

>

> Did anyone else get upset about going on this restrictive diet? I

am putting it off, because I can't imagine giving up everything I

love. Plus, I can't imagine going to parties, and family get

togethers, only to stare and salivate over food I can't have. With

kids in the picture now too, the stress of being on a specialized diet

scares me.

>

> Any encouragement you have would be great!

>

> Jill