This Is So Hard!

[ptjamie]

Hi all. I am new to these boards and to celiac disease. At this point I am not sure if I have celiac disease or gluten sensativity. I have been plagued with headaches, fatigue, stomach problems, ecsema (sp?), and joint pain all worsening for the last few years. Doctors could never figure out what was wrong, I discovered Celiacs on my own and then found out its all over my family as is a severe wheat allergy (I have a cousin who went into shock after eating a bag of wheat nuts). I finally got an appointment with a gastro on 7/27 and am trying to stay gluten-free in the meantime. Its been about a month and most days the symptoms are better but it is so hard..I keep accidently digesting gluten (and then getting really sick) today is the worst I have reacted. Im getting married saturday and am afraid im going to end up really sick...fruit is always safe right? I already talked the rehersal place and they are making my meal gluten-free and the reception hall is working with me too. i am bringing in my own frosted gluten-free muffin for teh cake feeding thingy. Any other suggestions?

Thanks!

Jamie

[VydorScope]

I hate to tell you this, but... DONT GO gluten-free. If you go gluten-free it will effect the test results. I know it sucks, but if you want accurate test results you need to be eating gluten.

Also ... celiac disease is alot more then just wheat... Wheat, Oats, Barely, Malt, and rye are the "big ones'

Check this list of BAD foods for celiac disease...

https://www.celiac.com/st_prod.html?p_prodi...-08105445802.d8

[gf4life]

Hi Jamie,

Welcome to the board, and congrats on getting married. I agree with Vincent here. I was gluten-free for a while before having my tests run, and even though I went back on gluten I am sure it messed up my results.

I would say eat the gluten-free meal and cupcake on Saturday, since you don't want to be horribly ill at your wedding, but before then and after that day please continue to eat gluten until you are finished with ALL of the testing the specialist is going to do. You want accurate results, so that you can have a conclusive diagnosis.

And yes, gluten is in Wheat, Rye, Barley and Oats but everyones reaction to those grains are different. I notice a difference between my reaction to wheat and my reaction to barley. I don't every accidently get rye and am not sure if I react to oats, since I avoid them and they aren't usually "hidden" in various foods. So it would make sense that every one in your family has a wheat "allergy" and the possibility that Celiac disease is present in many of these individuals is pretty high. It is also possible to have both Celiac AND a wheat allergy.

God bless,

Mariann

[ptjamie]

Thank you both for your responses. i will go back on gluetn after the wedding if it will help my tests definatly, I just dont want to be sick the day of. Its taken so long to have ANY idea what is going on with my body that I am just so happy to be responding positively to SOMETHING. I was told I would have to live with these awful daily headaches and very frequent debilitating migraines forever and there was nothing they could do for me. I just went 4 days without head pain for the first time in over a year..then something snuck in there today. Ive had stomach problems since the day I was born....been told I have IBS, was lactose intolerant and just plain "sensitive"...but that didnt bother me as much as the head.

I will start the gluten again ASAP and hopefully my appointment on the 27th will get us somewhere. Its an intial consult so we'll see.

Thanks for the congrats I am really excited about Saturday and thrilled at the prospect of being able to enjoy my day without pain!

tHanks for the food list..it will help.

Jamie

[KaitiUSA]

I agree, do not be gluten free until all testing is complete. If you are gluten free now till your appointment that can cause it to be off maybe. How long have you been attempting to be gluten free? You should be eating gluten everyday for 3 months before testing.

[ptjamie]

Kaiti,

Thanks. I have been trying to be gluten-free since July 4th. Now that I know I will go back to gluten right after my wedding on Sat I just dont want to spend my wedding day sick I didnt realize you had to be eating it before the test. It gonna be hard to put something in my body I KNOW is going to make me feel like garbage but if thats what must be done to get an answer Ill have to do it

Thanks again

Jamie

[drewsant]

[VydorScope]

Stay gluten-free for your Wedding, tests can be redone later if need be

[FaithInScienceToo]

I have to second the person who said, "STAY GLUTEN-FREE for your weddding!"

Don't take ANY chances before or during...not worth worrying about tests results...put off the tests...be 'clean' for at least 2 weeks pre your wedding...

My BEST WISHES!

Gina

[KaitiUSA]

Kaiti,

Thanks. I have been trying to be gluten-free since July 4th. Now that I know I will go back to gluten right after my wedding on Sat I just dont want to spend my wedding day sick    I didnt realize you had to be eating it before the test. It gonna be hard to put something in my body I KNOW is going to make me feel like garbage but if thats what must be done to get an answer Ill have to do it

Thanks again

Jamie

<{POST_SNAPBACK}>

If you want to be gluten free and you know it is making you sick do you need testing?

Also, if you want to be gluten free for your wedding can't you postpone testing for a few months while you get back on gluten?

If you stay gluten free then there is a strong possibility that your results will show up negative. Testing can be done later, a few months after your wedding , while you are on gluten.

[ptjamie]

thanks again everyone for both the well wishes and advice... I cant believe the wedding is tomarrow. I dont think Ill be getting any testing done on the 27th anyway so I could delay the actual testing until October. Weds is just my initial consultation withthe doctor to see what he wants to do..if the diet evidence is enough for him its enough for me. If he wants to do the testing it'll just have to wait a few months. Do you need to be on gluten for the genetic testing?

Ok off to bake my gluten-free brownies for the cake feeding tommarrow

Jamie

[ptjamie]

Thanks for your support everyone..made it through the wedding feeling fine My meal and the wedding and at the rehersal dinner were soooo good and gluten free. I made myself a gluten-free brownie for the cake feeding which the hotel frosted to look like the cake. overall the day was perfect and I didnt have a horrible headache and wasnt sick! YES! I go to the gastro tomarrow so we'll see wht he says whether the diet changes are enough or if he wants to do tests in 3 months

Thanks again everyone!!!!

Jamie