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Need To Be Eating Gluten To Be Tested?


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#1 DMarie

 
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Posted 05 January 2005 - 04:07 PM

Hi,

I’ll ask my question first…then give a little background. My question is, if I have been following a diet that rarely has gluten in it, and I want to test for Celiac Sprue…do I have to eat gluten regularly for a certain period of time before it will show up on a blood test?

I have been wondering for some time now if I have Celiac Sprue. I have many problems with food, which seem to stem from some food allergies (not severe food allergies, but diagnosed sensitivity to items such as corn, tomatoes, soy, tea, brewers yeast, and one other item I can't remember...not dairy). When I originally started having problems (dizzy, foggy feeling, very difficult to focus) it was discovered that I have low thyroid. However, medication didn't alter these symptoms, so I adjusted my food, thinking perhaps I had a yeast problem. At the this time, I didn’t know about the food allergies. Adjusting my diet did help some, and the reason I think it helped was because by and large if you are treating for candida (yeast) you avoid carbs, and gluten is in wheat, et al…which are carbs. However, I still had various symptoms (dizzy, foggy feeling, sometimes bad gas, constipation, headaches, rash patches on my eyelids, nausea, etc) but couldn’t seem to relate it to specific foods.

Ultimately I found out about the food sensitivities, and that helped, because I eliminated those items (or rather, I eat them infrequently). I also had a stomach function test done which showed that food moves through my digestive system very, very slowly. Still, sometimes I ate seemingly well, only to have that dizzy, foggy feeling (a sure sign something I ate was wrong)…and I wouldn’t know why. Wheat has always been the biggest offender, though I don’t test as allergic to it. So, I started being more careful with food, trying to avoid additives, etc. since I thought that perhaps it was these things that caused the reactions. I also have aching hips and knees, which I have read about with interest on this forum as others seem to have the same problem. In fact since the summer, I have been having back problems (seems nerve related, am taking pain meds and muscle relaxants until Feb, when my insurance kicks in) that I will ultimately need an MRI to find out what is going on, since nothing else has worked. My fear is, they will do the MRI and NOTHING will be wrong….and what would that make me then other than crazy or just imaging it??? I am wondering if these other aches/pains can be referred pain caused by Celiac Sprue. I also thought I was having gall bladder problems this summer, and my doctor, knowing I don't have insurance right now, had me do a gallbladder cleanse, which did help...but that was when my back problems started.

I don’t have typical symptoms of Celiac (loose bowels, weight loss). In fact, I have a heck of a time just trying to loose an extra 5 lbs, and I have been constipated for as long as I remember (I take magnesium and supplement with psyllium daily to help). However, in the past month, even though out of frustration I have been eating very sloppily, I noticed I am dropping some weight. Happy about the weight loss, but as I am eating sloppy, not excercising (the back problem)…I know something else it up with that. I do know that the one doctor I see for my hypothyroidism didn’t seem to think Celiac was an issue, but that it was some sort of digestive problem that could be supplemented for…maybe he was thinking gluten intolerance…I am not sure, it has been some months since this conversation.

I don't know what to do, but am very frustrated because I don't feel well or it takes so much effort and energy to feel somewhat well....yet nothing ever seems to be wrong. :(

One other thing...I was severely bulimic all through my teen years and early 20s...which I believe it part of the root of my problem.

Thanks for any advice you guys might have.

Dawn
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Dawn

Gluten Intolerant. Celiac bloodwork - negative (levels were tested after being very low gluten for over a year).
No other testing done (not worth the pain). Mostly Gluten Free since 2003. Stopped all gluten 2006.

2 daughters also gluten intolerant (14 and 18). Youngest is very sensitive. Bloodwork done before trying a gluten free diet - negative. Oldest decided to do a gluten challenge before any testing.

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#2 celiac3270

 
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Posted 05 January 2005 - 04:19 PM

I’ll ask my question first…then give a little background. My question is, if I have been following a diet that rarely has gluten in it, and I want to test for Celiac Sprue…do I have to eat gluten regularly for a certain period of time before it will show up on a blood test?


To answer your question, yes you need to be on gluten to be tested for celiac disease. Since you have been on a gluten-free diet for awhile, you will test negative for celiac unless you consume gluten for a period of about a month before testing. This time may vary depending on how long you've been gluten-free and how strictly you've been following the diet. The key thing is that you need to be on gluten to get a diagnosis via blood test and you need to be on gluten if you're having an endoscopy so that your intestines are damaged enough.

I have to go soon so I can't take a lot of time to reply to the rest, but eating disorders aren't at all uncommon with celiac. Additionally, there are no really standard symptoms...actually, a majority of celiacs are asymptomatic. So regardless of what your symptoms are, celiac is a possibility. Diarrhea, gas, etc. are just made to seem like the standard symptoms because those are the most common in symptomatic celiacs.

Welcome to the board!

-celiac3270
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#3 tarnalberry

 
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Posted 05 January 2005 - 09:23 PM

Yep, you need to be eating gluten to do blood tests (or biopsies) for it.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 Dustyman

 
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Posted 08 January 2005 - 01:19 PM

Hi. I think I need some help...quick. Many years ago an allergist told me I had a mild wheat allergy. I didn't pay a whole lot of attention to it until recently when my symptoms got totally out of control. Told my GI I thought I might have celiac disease and I am going to have blood work done this Wednesday and a biopsy the following Wednesday (have an endoscopy yearly for another digestive problem). Anyway, in early December I stopped eating anything with glutin and I feel amazingly better. The problem is, it occurred to me that perhaps my blood work and biopsy will turn up negative because I've changed the way I eat. Checked with the doctor's office to see if I should start eating wheat again for these tests and they told me it's not necessary. After reading the postings on this site, I'm really nervous that I'm going to end up with negative results. What say you all? I don't want to do it, but if it means positive versus negative results... Obviously, at this point I don't have a month to do it, but I know what some of my worst triggers are.

By the way...I am thrilled to have found this site! Thanks for any input.

Carol
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#5 MySuicidalTurtle

 
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Posted 08 January 2005 - 01:31 PM

If the diet is working well for you you can stick with it if you'd like but if you really want the test diagnosis then should eat gluten.
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#6 celiac3270

 
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Posted 08 January 2005 - 03:20 PM

Your other option is Enterolab (depending on how long you've been gluten-free). You can order a test kit for celiac and you'll get accurate results as long as you haven't been solidly gluten-free for a few years....and I assume you haven't been gluten-free for 4 years or something :)


P.S. It's unlikely that your doctors would accept Enterolab, but many here have used it and been very satisfied. ;)

Edited by Coulter, 08 January 2005 - 03:21 PM.

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