Apparently they are negative --

IgG .8 U/ml
IgA .5 U/ml
TTG IgA .8 U/ml
EME IgA Negative
Total SerumIgA 152 mg/dl

I have read that it is possible to have a false negative. But, with these numbers, is it really possible that is the case? I have been gluten-free for about 10 days and have noticed a little improvement (no more stomach pain, not as bloated after eating, the constant pain under my left rib cage is gone).

Please tell me what you all think.

Thanks.

I'm not familiar with the lab ranges myself, and US and Canadian labs can use different reference ranges, so I prefer not to comment! As well, I'm not a doctor, so I'm not qualified. However, if you have been told you tested negative on all 5 tests, I would take it as a negative. It is possible you are gluten intolerant or have a wheat allergy. That may explain the positive signs you feel from going gluten-free.

So, I'm confused. None of these tests would be able to tell me if it was just gluten intolerance as opposed to celiac disease? How would they test for the gluten intolerance?

Honestly, I don't know how they test for intolerances. It would not test + for an allergy, because it's not an allergy, and it would not test + for celiac disease because it's not celiac disease. While the symptoms may be similar, an intolerance will not damage your villi in the same way as celiac disease. Sounds like I am making you more confused, sorry

No, you are helping. I wasn't aware that the Celiac panel wouldn't indicate a gluten intolerance. I appreciate your input.

If anyone knows about this, please let me know. Thanks.

I have in some places seen the terms Celiac Disease and gluten intolerance used interchangeably. However, in other places, I see them used quite differently. celiac disease causes definite measureable damage to the villi of the intestine. A gluten intolerance my cause similar symptoms but not the same type of damage as celiac disease. celiac disease is an autoimmune disease, going on a gluten-free diet is the only way to treat it. An intolerance, as far I can tell, tends to be more self-limiting. You may chose to eat gluten (it won't damage you in the long run), but you will have to accept you will probably feel like crap, much like people with a lactose intolerance. Ultimately, most people will just avoid the foods that make them feel ill.

It's funny, I've been gluten-free about 10 days like I said and thought today at lunch that I might cheat based on my test results. My husband and I both decided however, that I should try staying gluten-free for a while since I've already noticed some improvement. I would love a Sister Schubert roll right now, but you're right. It's just not worth being doubled over in pain.

Hi, I showed up negative on all blood tests, repeatedly. And I am as full blown of a celiac as you can get The way they finally found it with me was with an allergist. He guided me through an elimination diet, quite differnet from just not eating something. First came skin testing to look for actual allergies, then he gave me a diet with only about 5 foods in it. Then after a couple weeks we started adding things one at a time, in pure form, back in for a week and looking for a reaction. With cream of wheat we had a 'bingo'. Some people are able to pinpoint multiple sensitivities this way that might be hard to find otherwise. You might want to consult an allergist, ask when you call about the elimination diet though not all can do it. I hope you get full relief soon.

Sensitivity, intolerance, celiac disease - it's all very confusing. However according to some of the leading edge researchers, celiac disease is just one manifestation of gluten sensitivity - "celiac disease is the tip of the GS iceberg". There are non-celiac disease GS people who instead of having villi damage are likely to have other equally life threatening problems, many neurological. Non celiac disease GS people can also suffer from nutrient deficiencies similiar to celiac disease. Bottom line is that for a lot of people gluten is just bad news.

I recommend reading "Dangerous Grains" by Braly & Hoggan for a good overview of GS.

Also you might want to check out the following website which focuses more on the neurological manifestations:
http://brain.hastypastry.net/forums/forumdisplay.php?f=141
Be sure and check out "The Gluten File" - 1st topic on this link.

I am GS. I am a 60 yr old male dx'ed 5 yrs ago with osteoporosis and with mild anemia forever. After reading that osteo and GS are related, I self dx'ed with diet and observed some mild GI problems go away quickly; therefore, I knew gluten and my body didn't get along. Subsequently I tested with Enterolab which confirmed what I already had learned by self-dx, and more importantly for me their DNA test found that I don't have the celiac disease genes, but do have a double copy of a GS gene that is implicated in several neuro problems. (I also have mild peripheral neuropathy, and restless leg syndrone both of which have improved after almost 5 mo gluten-free.)

In my opinion "just gluten sensitive" is just as serious as celiac disease - just gives one some different health problems. Also IMO I put more trust in self-dx by positive diet response plus DNA testing than the other tests. All the other test can rule celiac disease or GS in but none can rule it out completely, particularly if you experience a positive diet response to being gluten-free.

Hope this helps.

George

It is a great help. I will check out the resources you provided. Thanks so much.

I agree with George and others. Gluten sensitivity is real and serious. The focus always seems to be on Celiac Disease with doctors. If you don't have celiac disease, you are not really ill. That couldn't be further from the truth.

For example, I had some GI problems, had a colonoscopy and endoscopy. The biopsies all came back positive, two months later the doctor decided to confirm celiac disease by blood work. After three months of gluten-free diet, it was negative. She then informed me that I definitely did not have celiac disease because the blood work was negative. I now know that a gluten-free diet can influence labs in a brief time. She told me to go back to eating wheat/gluten. When I did, I became really sick.

I decided on my own to go gluten-free no matter what she said. Eventually, I found a great rheumatologist that said I must go gluten-free or continue to get weird symptoms and various illnesses. She believes that the biopsy is the "gold standard" and if it is positive for celiac, then you have celiac. That day I did it for real.

Even with all the different symptoms disappearing one by one, I was curious about the genetic testing at enterolabs. I broke down and submitted the complete gene and stool panel. Best $350 ever spent. While it came back negative to Celiac genes, it did confirm what I thought all along--double gluten sensitive genes. My parents then tested for double gluten sensitive genes and so did my sister.

Although I feel very good about my eating habits, the other tests indicated that I am still getting glutened. This information only made me more adamant about seeking out truly gluten free foods. I question all labels and call manufacturers when necessary. If you don't take care of yourself, who will?

My long point is this. Go gluten-free, invest in the enterolab tests for personal knowledge, seek medical assistance but move on from doctors that don't support your beliefs and decisions regarding gluten-free living, take care of yourself and . . . patiently wait until the medical community wakes up to this gluten sensitivity issue and WE are proven right! Good luck.

Kelliac,

You had a positive biopsy for celiac but have no celiac genes? Wow! so it really can happen this way. Thats what my GI told me but alot of people say w/out the genes you cannot have Celiac. I guess you prove them wrong. Do you happen to remember your genes?

Glad to hear that others out there improved on the gluten-free diet despite negative test results.
My Kailyn, (2 1/2 years) showed negative on blood and biopsy. However is doing amazing on gluten-free diet (since 4 months ago) She's putting on weight (She finally has a toddler tummy, it's so cute!!) No more waking at night screaming, or tummy aches, or diahhrea.

Kelliac,

I too would like to know what your genes were. I am learing more and more about this every day and truely believe that my dd has celiac even though her blood test was neg. and her genes came back "gluten sensitive". She has a double copy of DQ-1. She was so affected by the gluten (distended stomach, behavior problems and hair loss due to malnutrition). I guess it's possible that she doesn't have celiac disease, but I think she does. If she doesn't I guess that just confirms that being "just gluten sensitive" can be just as damaging. My little girl was so malnourished that her hair was falling out in clumps and she was actually balding... I would consider that a severe reaction.

Anyway, this topic is so interesting to me because like a previous posted stated, drs. just don't seem to take this as seriously unless there is a positive celiac disease dianosis. I honestly believe that celiac disease is the tip of the iceburg and I hope that the near future brings much more research and knowledge for medical professionals as well as the rest of us.

Where was your test done? Most labs test for both celiac disease and gluten sensitivity (this also has a gene makrer).

Wheat allergy can be s determined by stool sample test - Enterolab.

Search out Kimball, Enterolab, Prometheus, Immuno labs - all have websites.

I believe it is Carrifatih on this forum that has a wheat allergy. Maybe she can tell you how and where she was tested. Claire

Non Celiac gluten sensitivity is a genetically determined disorder that differs from celiac symantically more than any other way. Supposedly there is no villi damage so they won't call it celiac - yet there are many celiacs who have no villi damage but have positive blood tests.
Non-celiac gluten sensitivity is just as damaging to the body as celiac and body organ cells are similarly attacked. The gluten sensitivity is highly associated with the brain damage that produced ataxia, essential tremors and related neurological disorders. Like celiac it does not 'go away' and is managed by a lifelong gluten-free diet.

All this 'wisdom' comes from my current experience - I do not have celiac disease. I do not know if I have non-celiac gluten sensitivity. I do have Type II, Delayed Food Reactions to all grains except rice and oats and I have a progressive ataxia which includes gait and balance problems and essential tremor. I will get blood test results from NIH in January - they tested for the many
SCAs - spinocerebellar ataxia. Claire

[She believes that the biopsy is the "gold standard" and if it is positive for celiac, then you have celiac. That day I did it for real.
1 2005, 04:02 PM]


My long point is this. Go gluten-free, invest in the enterolab tests for personal knowledge, seek medical assistance but move on from doctors that don't support your beliefs and decisions regarding gluten-free living, take care of yourself and . . . patiently wait until the medical community wakes up to this gluten sensitivity issue and WE are proven right! Good luck.

[/quote]

So glad to hear someone is getting their issues resolved. So Many here are still struggling.

"She believes that the biopsy is the "gold standard" and if it is positive for celiac, then you have celiac." This doctor is misinformed. She needs to read celiac research literature. A great percentage of celiacs to not display any intestinal damage. They have the gene markers. They have the symptoms. They can then be brushed off by doctors to hold to his outdated view of the 'gold standard'. If researchers are not being too optimistic - definitive testing and diagnostic parameters will be determined over the next few years. Claire

Intestinal villi damage can be done by reactive foods - not food allergies but the foods that generate autoimmune reactions - i.e. Type II, Delayed Food Reactions. I do not have celiac disease.
I have had and significantly healed intestinal wall damage. Claire

My understanding is that you start out gluten sensitive and it can lead to celiac disease--celiac disease is the final stage. It doesnt matter anyways--if you are gluten sensitive or gluten intolerant--you still are very ill. Deb

Most of the literature on celiac, on gluten sensitivity and on the genetics of the two does not seem to support this understanding.

True, you are ill in either case. It matters to the degree that you can be subject to different damage depending on which disorder your have. Strangely enoughly celiacs often are painfully ill while at least some with gluten sensitivity don't suffer so much of the painful symptoms but develop severe neurological disorders. These neiro problems are clinically more prevalent in those with a genetically determined gluten sensitivity. Claire

Regarding celiac disease dx w/o either the DQ2 or DQ8 "celiac gene", according to Dr. Fine on the Enterolab website the distribution of genes vs celiac disease is:
DQ2 90%, DQ8 9%, DQ1 or DQ3 1%

Therefore by his data there is at least a 1% chance of having celiac disease w/o the DQ2 or DQ8. And 1% is the same probability of someone in the general population having celiac disease irrespective of genes which most of us realize is not insignificant. We shouldn't be too surprised to see the occasional non-DQ2,8 with a celiac disease dx, particularly if they have DQ1 or DQ3. My guess is that these reported gene distributions have been rounded off so there may be a small chance of celiac disease/GS without any of the above gene types.

There's a lot more yet to be discovered about genes and celiac disease and gluten sensitivity. DNA results are still a lot like blood tests and biopsy - they can not definitely rule out celiac disease/gluten sensitivity.

It seems like positive response to the gluten-free diet is still the most reliable dx of gluten sensitivity.

George

I can't remember how to read the numbers, but is your IgA low? If you're IgA deficient, you can have Celiac and never test positive for it.

http://www.pubmedcentral.nih.gov/articlere...cgi?artid=95847

I understand any food intolerances can irritate the gut wall or cause leaky gut but I have never read anything that says Type II food reactions can damage the villi as seen in the biopsy. I've read some rare cases of casein intolerance causing villi damage but I think its pretty specific for celiac disease and gluten is primarily the problem. I'm not aware that other foods can cause visible villi damage.

Well I just got back from the doctor he said they are considering the test non posiitive for celiac but extremely high gluten sensitivity. Now, a couple of years ago my allergist showed that I tested positive on wheats for allergy and gluten sensitivity then. However my doctor told me perhaps I should go gluten free and in 3 months we will test again for celiac and to make sure I eat and give gluten a chance to digest for that test. He believes it is entirely possible that I am celiac.

Rusla

This is my family doctor, not a GI.

I can tell you from bitter experience that this is true. I suppose, initially some one food or other starts the process. I suspect that for me that food was gluten. Once the leaky gut occurs all kinds of food particles can go into the blood stream - and the immune system mounts yet another response to each one. Before long you are reacting to everything. I tested reactive to 30 out of 100 foods tested. The more reactive foods going through the leaky guy the more leaky it becomes until it is like an open door ' won't you all come in'!!!

Fortunately leaky guy can be healed. Celiac - and gluten sensitivity cannot. Claire

Methinks your family doctor is confused. That's not surprising - most are. If you are positively not celiac now you won't be celiac in 3 months. If you go gluten free only genetic testing or stook sample testing can tell anything for sure. Blood work will be a negative.

Maybe you need to go higher up the medical nerd chain. Claire

I guess what I was trying to say is that leaky gut and villi damage seen in biopsy are 2 different things. Lots of things can cause leaky gut...stress, food, antibiotics...etc. However, you cant *see* leaky gut...it doesnt show up in a biopsy. Believe me, I know what leaky gut is because I have it but I also just had a "pefect" biopsy. Villi damage is caused by gluten while any food intolerance can cause leaky gut...its just not identifiable...except in the leaky gut sugar test.

Different to the degree that one comes before the other. If villi damage is present, LG will be present. I understand that leaky gut can be seen and is seen when endoscopy is done to 'confirm' celiac. However endoscopy would not be used to determine leaky guy because there is an easy non invasive way to do that. Gluten is suspected as the primary food cause for LG.
I was diagnosed with the LG problem 15 years ago. Claire

The problem here is I had a GI 5 years ago who only wanted to do bone marrow tests,he refused back then to believe my thyroid and pernicious anemia were a problem when they did show up in tests, he dumped me and made sure no other GI would see me in the city. My doctor tried to find me another GI but none would see me. When the thyroid showed nodules in my ultrasound and
extreme high antibodies no endocrinologists would see me because they wanted my nodules to get bigger instead of trying to shrink them. My family doctor did try to refer to another GI this week and had listed the fact I have lost 11 teeth in less than 5 years, gained 175 lbs, burning stomach the things that breakout on my face, wrists and upper arms, etc.etc. they said to notify them if the test show something different.

I am so angry with doctors, they don't care and then one of them said I would have to wait more than 24 months to get in to see them.Of course they have tried to blame this constantly on my being post menopausal.
I did not have gluten for two days prior to the test and I wonder if that had anything to do with it, I didn't plan it that way and it just happened that way.
My family doctor is frustrated with them and so am I. If anyone has any other suggestions, I would love to hear them but going to GI or even Endocrinologist is out of the question. They want to see me grow three heads then they will maybe see me.

I was tested thru Prometheus. Everything they tested for is on the top post. I started seeing a new gi doc this week and he told me to stop the gluten-free diet, that it isn't necessary since I tested negative for celiac disease. But I told my husband, something I am doing must be right -- I am feeling so much better. Been gluten-free about a month.

IgG .8 U/ml
IgA .5 U/ml
TTG IgA .8 U/ml
EME IgA Negative
Total SerumIgA 152 mg/dl

I don't remember what the ranges were.

Replying here to a message above from darlindeb:


I know that some people do believe that non-celiac gluten sensitivity can 'turn into' celiac. . I am not one of them. I can't find anything to indicate that in all the tons of stuff I have read on the subject. It seems to me that the gene marker is a definitve. You have it - you can develop celiac. You don't have it - you can't. Likewise for the genetic marker for non-celiac gluten sensitivity. Certain that 'subset' of celiac can get worse - i.e. more overt symptoms but that doesn't make it celiac.

There are many researchers who think this distinction between the two is less than clear and would like to see some new testing parameters and new terms that would be less confusing. Many with celiac have no intestinal damage. There are non-celiacs who do have intestinal damage. There is a higher occurance of neurological diseases in the non-celiac 'corner' - yet there are some celiacs with that too.

It is confusing and misleading but I am unconvinced that one thing turns into another. I sure have been wrong lots of times. This might be one of them. Claire