Some help please!

Violetbrown · Joined: 06 Aug 2007 Posts: 9

Hello

After initially being told that I have celiac disease I have to have my blood tests again to find out whether I have celiac disease or wheat intolerance. So.... after a year or so without gluten I now have to eat it for a month before the blood tests. Talk about be careful what you wish for! After just over a week of bread, cake and pasta I feel fuzzy headed, depressed, bloated and utterly miserable. My eyes are streaming too. How do I get through the nest few weeks ??? Has anyone else had to do this? If so are some foods gentler on the system than others?

The silly thing is that even if all tests come back negative I will still give up gluten - how I feel and look is enough to tell me it's doing me no good.

Any help in getting through this month very gratefully received

Thanks

xxx

aklap · Joined: 02 Oct 2004 Posts: 8505 Location: WI, USA

cruelshoes · Joined: 23 Sep 2005 Posts: 2501 Location: Washington State

What exactly did your bloodwork say? Did you have an endoscopy? Why is your doctor wanting you do to a gluten challenge? If it were me, the reasons for doing it all over again would have to be pretty compelling for me to ever want to eat gluten again.

Please let us know so we can help. Smile

_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

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

Violetbrown · Joined: 06 Aug 2007 Posts: 9

Thank you for your quick replies. I had the blood test about a yr ago and got impression I was celiac, however speaking to another Dr at my medical practice - they said results indicate wheat intolerance not celiac. He wants to run tests again along with some other blood tests I am having to clarify as he's concerned at me cutting out so much from my diet without being sure it's celiac.

Sigh Sad

Violetbrown · Joined: 06 Aug 2007 Posts: 9

Oh sorry - original results said positive in one aspect, negative in two other readings, a bit vague I wished I'd asked for more details!

cruelshoes · Joined: 23 Sep 2005 Posts: 2501 Location: Washington State

Can you get copies of your bloodwork and post them? We will be happy to help give them the "sanity check". We're not doctors, but most of us have seen our share of bloodwork results.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

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

aklap · Joined: 02 Oct 2004 Posts: 8505 Location: WI, USA

When [if] the new doc runs tests, please make sure he runs all the tests listed here:

Our Thread on Celiac Blood Tests & More Diagnostic Info
_________________
Al

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

Violetbrown · Joined: 06 Aug 2007 Posts: 9

Thank you. I will ask for them after my next blood test and let you take a look too. At least people's responses were as stunned as mine!

I can understand the Dr in a way - i just wish it had been sorted out last yr. By the way my last blood test was done when I'd virtually given up gluten too.

Thanks again for your help

x

Violetbrown · Joined: 06 Aug 2007 Posts: 9

Oh just wanted to say I don't only come here when begging for help Wink

I am a regular lurker, especially at the recipe section

x

aklap · Joined: 02 Oct 2004 Posts: 8505 Location: WI, USA

cardine45 · Joined: 15 Apr 2008 Posts: 105 Location: Kalamazoo, MI

I know exactly how you're feeling. I had my appointment with my gastroenterologist yesterday and he told me that my endoscopy, colonoscopy, and barium enema came back normal. I could have told him the endoscopy would probably come back normal as I had already been gluten free for about a month from what I remember. He told me that I should go back on a gluten diet for 3 months so they could redo the endoscopy. I honestly sat there in stunned silence with my mouth wide open for a few moments before I finally asked him if that was necessary. He said that it was the only way for me to get a "true" diagnosis, but no, it was not necessary. In my mind, I feel a million times better, and whenever I slip up, I feel like absolute crap. There is absolutely no way I am going to put myself through 3 months of that. The only thing that will do for me is make me feel like crap, and I'd probably lose my job because I wouldn't be able to make it to work.
I know I should have waited and done the endoscopy in the first place, but I was at my absolute breaking point when I changed my diet. I couldn't stand how I was feeling as I had absolutely no energy, I was constantly in the bathroom, and I had no quality of life.
My advice to Violet is that it's you're decision, but if it makes you feel like crap, I would find out how it will benefit you. I realize that CD can mean more long-term possibilities for problems compared to a wheat-intolerance, but if you'll stay gluten-free either way, does it really matter? There would have to be some really compelling reasons for me to ever purposely ingest gluten again.

aklap · Joined: 02 Oct 2004 Posts: 8505 Location: WI, USA

Violetbrown · Joined: 06 Aug 2007 Posts: 9

Hello

Sorry it's been a while since replying it's been a hectic time for me.
My blood test results have come back negative. I should be delighted right? Instead I am just more confused.

I did find out what I tested positive for from last years blood tests. It was Iga gliadin (excuse spellings!). Does that = celiac disease or something else in your experience??/ After a year-ish avoiding gluten followed by 6 weeks of eating at least 6 slices of bread or equivalent a day this blood test and the others are now negative.

If anyone has any thoughts I'd be glad to hear them.

With thanks

xxxx

zip2play · Joined: 24 Jan 2006 Posts: 233

How have you felt? I don't have a definite diagnosis either, but man, I feel horrible if I get gluten. To me, that says it all!

Sorry things are getting so confusing.

Monica