Where Do I Go From Here

[collgwg]

what do i do

my simple blood test came back neg

now my family is telling me that i dont have celiac and that i can start eating normal food

i tryed that the other night and i ended up in bed all day yesterday with extreme migraine and extremely tired today and diareah all day

i tryed to tell the mother in law that it was because of eating gluten in the party mix the other night

but she implied that its all in my head and said well did'nt they say you can eat gluten now i said no the blood test came back negative and i still do not think i can tolerate gluten well how do you know she says you have not eaten it in about a month so i ate the stupid chips and got sick

oh and that she has never hear of such a thing omg this woman is a nurse and has been all her life

im trying to tell them that 30-60% of people do not test positive on the first simple blood test

and that further testing needs to be done

i have been eating gluten free for mabe 3 weeks now and feelign pritty decent until i found out im suverly allergic to soy then

my throat and all the way down ended up getting a rash like infection after eating a gluten-free cookie and glass of milk

and my glands behind my ears are swollen and i have a dusty like cough

and my joints hurt and im geting muscle spasums in my ribs and back area and neck and thighs once all that calms down im sure ill feel better

i just feel like im all alone and have no one to turn to

[shadowicewolf]

Those blood tests have a moderently high chance of being false, yet with you still being positive . I would consider getting another one while you are still eating gluten to see if it will be positive or not (don't blast me on this, but my thinking is that it didn't show up positive because you hadn't been eating it, and if you reintroduce it for a little while it should in theory show up).

[ravenwoodglass]

I am also allergic and intolerant of soy. There is still quite a bit of stuff that we can eat if we have to avoid both. Glutino crackers, Udi and Grainless Baker Bread, Chex, Snyders pretzels and more, just read the labels carefully.

You say you were feeling better the three weeks you were gluten free and the introduction of gluten again made you ill. Talk to your doctor and see if he will 'diagnose' based on dietary response and your reaction to adding gluten back in. Perhaps he would give you a 'script' written on a prescription pad that you can show your doubting family members that you should remain gluten free for the time being to see if it helps.

Some doctors do realize that the tests can be a false negative so the doc may be willing to do so. Another alternative is to tell your family members you got retested and this time the test was positive. I don't usually like to tell even 'white lies' but if you need to do this to stay safe then do so. It is none of their business what your test results are and with HIPPA regs they can't call your doctor and find out unless you give the doctor written permission to disclose the info.

[collgwg]

i agree i see the dr on the 30th

and i think she just might go for this

and i totally agree that i can go from this dr apt saying that i have either gluten intorlance or celiac

even thinking back to before i got sick all the signs were there

i could never eat pasta with out feeling super sick and bloated

i drank beer but felt so yucky after having a few bloated swollen feeling

and pizza i felt so bloated and blew up like a blow fish

i blew out my galbladder a while ago

i had virtigo a few months ago

i would loose my voice at least once a month

i could not loose weight no matter how hard i tryed

a couple family members also have celiac

now i have lost 25 lbs in 2 months going gluten free

and from being sick

thanks for all of your in put on this it sure makes me feel better its so hard to go through this with out any family or friend support

[Skylark]

You're not alone.

The blood tests can be wrong. You need to be strong and refuse to eat gluten around your family. They'll come around when they see you get well off gluten!

Good luck and keep posting here. There's lots of nice folks to help you out.

[collgwg]

thank you skylark

[mommida]

I remember getting the book Raising our Celiac Kids by Danna Korn and a whole section was about dealing with family and friends. How some people would want you to scientifically "prove it" to them. Well sorry to break it to you like this, but sometimes you just can't make someone you care about "get it".

DH/ Celiac/ gluten intolerance/ allergy/ or gluten as a "food trigger" for other disorders that are still being determined but not considered a true "allergy" all mean YOU HAVE TO BE GLUTEN FREE.

You sure find out who your true friends are!