Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

doubletriple

Gluten Free Diet And Blood Test.

Recommended Posts


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Is the purpose of the tests to determine if you do/don't have Celiac?

If that is the case, these tests will not be accurate as you have to be consuming gluten. Gluten is the trigger that makes the bloodwork positive in Celiacs; remove the gluten and your reactions subside. You may still test positive because your body hasn't fully healed yet, but if you test negative, it could very well be a false negative.

Think of it like a diabetic and blood sugar testing. When their blood sugar isn't controlled, and you test, the levels are all out of whack and clearly indicate that one is diabetic. Start managing your diet, and re-test, and your sugars will be normal. Your tests don't make you look like a diabetic at that stage, but it doesn't mean you aren't...it means you are taking the steps to keep it under control. Same with Celiac. Eat gluten---if you are a Celiac, you should test positive. If you go gluten free, your tests should return to normal...doesn't mean you aren't a Celiac anymore, it means it is being controlled and the "trigger" has been taken out

Your doctor should have told you to stay on a gluten FILLED diet until after testing is completed, then you are supposed to go gluten free.

Share this post


Link to post
Share on other sites

Well I am in one of my situations where my doctor knows next to nothing about this. I just looked at the blood tests he ordered (I have the order) and it says cbc, cmp and lipid panel. :wacko: He did say stay on gluten but I can't do that right now, college is hard enough as it is. But those tests will not find anything anyway.

Share this post


Link to post
Share on other sites

doubletriple,

I'm sorry to hear that you have a clueless doc. Unfortunately, when it comes to Celiac, there are many doctors out there like yours. It is really frustrating, especially when you are looking for answers.

The good thing about Celiac/gluten intolerance is that you don't "have" to have any diagnosis. You don't have to a have a prescription filled to maintain the diet, or anything like that. Yeah, it is easier to have a piece of paper that says "I have X" ... but if the diet improves your health and quality of life, everything else doesn't really matter anymore.

What were your symptoms that lead you to suspect Celiac? How have you been feeling since you started the gluten-free diet? Is there anything we can help you with...products, ingredients, questions, etc?

Good luck as you start this semester of school. Please let us know if we can help in any way!

Take care,

Laura

Share this post


Link to post
Share on other sites

Get a new doc and have him run a total IGA and a tTG. Everyone is different. MY son's test still showed positive after being gluten free 3 months. The tTG and EMA take longer to normalize than the others.

Share this post


Link to post
Share on other sites
Get a new doc and have him run a total IGA and a tTG. Everyone is different. MY son's test still showed positive after being gluten free 3 months. The tTG and EMA take longer to normalize than the others.

It's hard to get a good doc right now. I either have to go through MediCal or my college (UCSD). Neither seem to provide very much help.

Thanks for the support and concern guys. I usually don't see this when I'm a complete n00b on a forum.

I've had "chronic fatigue," depression, bowel problems and ADD all my life. I was looking on wikipedia a few weeks back for causes of Chronic Fatigue and come across this. Since I've started the diet, not all my problems are gone, as a lot of that is related to depression, but in many areas I feel better. I don't feel so sick in my stomach anymore, I have more energy and I don't feel like I'm gonna pass out anymore (this would happen every day or every other day). Also, my face is a lot less pale.

I'm curious about the enterolabs tests. I have the money, would it be a good idea? Is a diagnosis from there as good and credible as a doctor's? Can I take it to my doctor and have it be legit?

Thanks.

Share this post


Link to post
Share on other sites

Your tests may be false negative because you must be consuming gluten prior to the tests. The blood tests for celiac disease check for antibodies to gluten and when you stop eating gluten your body will eventually stop producing antibodies.


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

Share this post


Link to post
Share on other sites

Enterolab, in my opinion, is a HUGE waste of money. It is NOT reconized as a diagnosis for Celiac. It tells you if your gluten intolerant, but I think you figured that out by dietary response. We did Enterolab and I would save your "dough". Our Peds GI did not validate it in the least. If you're not going to pursue a diagnosis through blood or biopsy, I would skip Enterolab and listen to your body. If it's positive it will reaffirm what you already know and if it's negative, then what. You already feel better off gluten. Good luck! Just my two cents. :)

Share this post


Link to post
Share on other sites

You need to be eating a good dose of gluten, every day, to have accurate testing, because the blood test looks for a reaction to gluten - no gluten, no reaction even if you are celiac.

As for Enterolab - whether it will be accepted by your doctor or not varies greatly. It's not widely accepted yet, as there hasn't been peer review publication of their methodology yet, but a few doctors find it 'acceptable'. If you don't have obvious symptoms, it could be worth it, but a good gluten free trial followed by a challenge would be more acceptable to most doctors.


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

Share this post


Link to post
Share on other sites

Personally, if I had the money, I would still get tested by Enterolab myself. Even though I can't really do their normal testing for gluten intolerance, casein, soy etc. any more (and I know I react badly to all of those anyway). But I think I will go for the gene testing as soon as I can afford it. I would find it helpful to know if I have the celiac disease genes, or the gluten sensitive genes, especially because it would help in determining what kind of testing to suggest to my children and siblings if they ever believe they should get tested.

And even though Enterolab testing is not YET widely recognized, it soon will be. Plus, it would give you a valid reason to stay off gluten, and you can also get tested for casein and soy intolerance, which could be helpful as well.

You could still try the blood tests. But if they come back negative it won't be a big deal. All that matters is, that you feel better and are able to get your schoolwork done.

Do you realize that your depression can be caused by celiac disease as well? You haven't been on the diet for long, I wish you all the best in feeling better every day.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

I wouldn't be able to tolerate eating gluten again right now, too much school.

Yeah, I'm aware that my depression my be caused by Celiac disease. It would really help me to know what is causing what, for sure.

Any other opinions on Enterolabs?

Share this post


Link to post
Share on other sites

The blood tests I took while still eating gluten were negative.

I did the Enterolab tests to placate my spouse, who was worried there might be something else besides gluten intolerance. You can see my results in my signature. I also found a GI that accepts Enterolab, by calling celiac support group leaders in my area. Again, I only went to make my husband happy, but I'm glad I did, because he urged me to get a bone density scan, which showed osteoporosis.

My GI took one look at my Enterolab results and said we don't need a biopsy, that my test results and dietary response were enough to tell him I have celiac disease. The pre-menopausal osteoporosis was just one more sign of the disease.

So, back to your original question, your blood tests might well be negative. Dietary response is enough to say you should be off gluten. If you really want to go through the effort, you might be able to find a doctor who takes Enterolab. But if you can't, you might still find personal peace of mind by doing that test. It's all up to you.


~Li

Celiac, dx Sep 2006

Share this post


Link to post
Share on other sites

In the new book I am reading, "The Gluten Connection" by Shari Lieberman, she very positively discusses Enterolab's testing options. Another thing discussed is the great difficulty in diagnosing gluten sensitivity with blood tests....that you have to have fairly good villi flattening to produce the antibodies which show up in the blood tests. She says blood tests are inadequate to detect gluten sensitivity for a couple of reasons....

1) Partial atrophy is ignored. You can ONLY be guaranteed to test positive in the 3 antibody areas of antigliadin, anti-tissue transglutaminase and anti-endomysial if TOTAL villous atrophy has occurred....that is, if the villi are completely flattened. If you have partial atrophy you may NOT test positive for these because the atrophy and inflammation of the villi may not be severe enough to allow all these antibodies to easily pass thru your intestinal barrier. Only some of them...or even none of them....may be in your bloodstream, depending on the condition of your villi and the progression of your gluten sensitivity.

SO....you basically have to let things progress pretty far before your blood tests will show much. You could easily be very very sick at that point! If you've been fairly gluten free and healing has occurred over time, I wouldn't think pigging out on gluten for a short time before a test would be helpful...maybe not enough time to do the damage necessary to show up on the blood test.

Another interesting point is that typical lab testes do NOT identify all the antibodies in your blood. The most common antibody a gluten-sensitive person produces is antigliadin. The labs use a wheat in water solution as a buffer agent to test for the antibodies....only problem is that gliadin does not dissolve in water, so more than 30 gliadin peptides (molecules) are not evaluated by this test. SO....your body may be reacting to gliadin peptides that are not picked up by these blood tests.

BIOPSY problems...unless significant structural damage has occurred to the villi of the small intestines, physicians rule out celiac disease and gluten sensitivity. Without total villous atrophy, doctors consider a biopsy negative, even if early inflammatory changes are seen! However, research has shown that the brunt of the immune reaction to gluten can affect the function of the intestines and cause symptoms WITHOUT structural damage! Since the minority of gluten sensitive people actually develop celiac disease, a biopsy that confirms only significant damage means that the vast majority of those reacting to gluten remain undiagnosed and untreated for years!!

Genetic testing: If you have one or more genes for celiac/gluten sensitivity, there is a high probability you have gluten sensitivity and may develop celiac disease. Genetic screening cannot tell if you are gluten sensitive, only that you have a predisposition in place for it. Of the general population that does NOT have celiac disease, 20 to 30% test positive for these genes.

ENTEROLAB...pages 98 and 99 discuss stool testing and Dr. Fine's results. Page 100 also has a discussion of salivary testing for antibodies.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

Share this post


Link to post
Share on other sites

A blood test is pretty simple. If it's postive, you have your answer. If negative, try Enterolab or just stay on the diet. Good luck.

Share this post


Link to post
Share on other sites