Can You Have Positive Tests And Not Be Celiac?

[Gentleheart]

One year ago I was 'diagnosed' through Enterolab tests, saliva tests and an ELISA test. I have two genes, plus mild malabsorption and showed active antibodies - everything. I also tested sensitive to casein in all of the above tests, along with several other major foods. I didn't have a biopsy because I had been gluten free for many months before I knew such tests existed.

I have been faithful and careful to the best of my ability for 1 year, but have only gotten a few visible results.

My first question is: Is it possible to test positive on all of these types of tests and NOT be gluten intolerant or celiac? What would have to happen for all of these tests to give wrong results? Can other diseases or body conditions or even stress mimic these test results?

My second question is: Is cross contamination my only other explanation then? How fanatical have some of you super sensitive folks had to become?

Appreciate your help. Thanks!

[Gentleheart]

Posted this early this morning and haven't gotten any feedback. Does anyone have answers to at least the question about the possibility of test results being wrong? Appreciate it.

[VydorScope]

Posted this early this morning and haven't gotten any feedback. Does anyone have answers to at least the question about the possibility of test results being wrong? Appreciate it.

Yes it IS possible. If nothing else there is always human error. BUT it is very very very unlikly and easy to check with a simple gluten challenge.

Are you SURE your 100% TOTALLY and PERFECTLY gluten-free?

[burdee]

One year ago I was 'diagnosed' through Enterolab tests, saliva tests and an ELISA test. I have two genes, plus mild malabsorption and showed active antibodies - everything. I also tested sensitive to casein in all of the above tests, along with several other major foods. I didn't have a biopsy because I had been gluten free for many months before I knew such tests existed.

I have been faithful and careful to the best of my ability for 1 year, but have gotten no visible results. Ask me if I'm disappointed.

My first question is: Is it possible to test positive on all of these types of tests and NOT be gluten intolerant or celiac? What would have to happen for all of these tests to give wrong results? Can other diseases or body conditions or even stress mimic these test results?

My second question is: Is cross contamination my only other explanation then? How fanatical have some of you super sensitive folks had to become? How do you develop a lifestyle like that? It's already isolating enough.

Appreciate your help. Thanks!

If you had gluten intolerance symptoms which influenced your choice to go gluten free for 'many months before' your Enterolab and ELISA tests showed positive results for gluten AND casein sensitivity, I don't think all those test results are false. 'No visible results' does NOT mean your test results were false. No improvement may mean you have other food allergies or other related conditions (like other autoimmune diseases) which cause ongoing symptoms. You may have other problems besides gluten!

I want to share my long journey to health: My celiac symptoms were misdiagnosed for over 10 years. I also tested positive for the celiac disease gene, gluten and casein antibodies through Elab. After I removed all casein and gluten, I still had my symptoms of excruciating gut cramps, bloating, gas and constipation (plus canker sores, fatigue and other symptoms). I noticed more symptoms when I substituted soy for dairy. So I removed soy. 6 months later I noticed my daily digestive enzymes contained 'malt diastase' (BARLEY) which had caused ongoing symptoms. I found a safer brand of enzymes, but 2 years later I STILL had symptoms. So I did the ELISA test and a stool test for bacterial imbalance, yeast and parasites. The ELISA test showed 2 more allergies (eggs and cane sugar). The stool test revealed a Klebsiella infection and deficiency of bifidobacteria. After treating for the Klebsiella and taking probiotics I did better, but was still not back to 'normal'. Another Elab test for soy showed positive antibodies for soy, which confirmed my suspicion about soy. Even after abstaining from gluten, dairy, soy, eggs and cane sugar for another 6 months, I still had symptoms. Recently I tried some digestive enzymes with Betaine Hydrochloride. Those greatly improved my digestion and reduced bloating and gas. I recently learned that the acid blockers, which I was prescribed, when I was misdiagnosed with gastritis (instead of celiac disease induced reflux), depleted my stomach acid which caused bloating and gas after every meal. I'm doing much better now with almost no symptoms.

BOTTOM LINE: If a strict gluten free diet has not relieved your symptoms, consider testing for other food allergies or other autoimmune conditions or even microscopic colitis. Also consider sources of cross contamination for dairy and/or gluten. The longer you had undiagnosed or even misdiagnosed celiac disease symptoms, the more likely you developed other allergies or autoimmune conditions.

BURDEE

[Rachel--24]

I had the same results as you...I tested positive for IgA, tTG, and malabsorption. I have no Celiac genes.

I've since come to the conclusion that Enerolabs "gluten sensitivity" genes dont mean much at all...nearly the entire population here in the US is going to have these genes, or Celiac genes...or one of each. Gluten sensitivity genes mean nothing to me.

Enterolab results dont prove gluten intolerance is the root of your illness and they dont prove Celiac either. They are not able to diagnose Celiac Disease.

I think in many cases what Enterolab is actually diagnosisng is Leaky Gut. In this case you would have antibodies against gluten but this doesnt mean that glten is *causing* the leaky gut.

I realized after a couple months gluten-free that there was more to it...as my symptoms did not resolve. I have since been diagnosed for the underlying issues which have led to severe leaky gut....and YES...I do need to remain gluten-free to avoid a worsening of symtpoms.

I do not have Celiac genes and the Dr.'s say I will be able to consume gluten and all other food intolerances (which I have a ton of) once I am treated effectively for Lyme, mercury and candida.

Many times it can start from one thing and snowball into many things....Candida is a real problem in itself but its actually a "symptom" of what allowed for it to occur in the first place. Same with my gluten intolerance...its a *real* intolerance which produces a *real* immune response...but yet its also a symptom of the other issues.

There would be no Candida without the Lyme/mercury and there would be no Gluten Intolerance without the 3 of these things causing a very leaky gut.

If you continue to be symptomatic even while gluten-free....there is most likely more to it. It doesnt mean that the gluten intolerance isnt in fact there...it very well could be. It just means that its not at the "core" of your health issues. Never once did I go off of my gluten-free diet...even when I knew it wasnt the main cause of my illness. Its still something that I cant ignore if I want to fully recover.

I have good Dr.'s now and even though I'm being treated for these other things they do tell me to avoid gluten, dairy and sugar. These 3 things are going to be problems for some people dealing with Lyme...and for most people dealing with mercury and for ALL people dealing with Candida.

[Gentleheart]

Thanks for the replies!

Yes, I am being as careful as I know to be. My kitchen isn't gluten free, but I live very carefully in it. I don't eat out, so if I'm being contaminated, it's something I'm doing wrong myself. I'm careful with all my cosmetics as well.

I did all the extra testing up front and determined that besides gluten, I was also intolerant to dairy (all parts), eggs and soy. So I have eliminated all of those things, plus a few others from my ELISA test for this entire year as well.

I am a celiac who has little gastrointestinal manifestation. And when I do, it's constipation. I have a touch of osteoporosis and also cannot lose a pound no matter what I do.

[Ursa Major]

Could you tell us what your current symptoms are, since you are saying that they aren't gastrointestinal? That might give us more clues as to what might be wrong.

I agree, the osteoporosis is likely caused by malabsorption due to celiac disease. Have you been tested for levels of vitamin D, calcium and magnesium? It is usually a lack of vitamin D that is at the heart of osteoporosis.

[Gentleheart]

Could you tell us what your current symptoms are, since you are saying that they aren't gastrointestinal? That might give us more clues as to what might be wrong.

I agree, the osteoporosis is likely caused by malabsorption due to celiac disease. Have you been tested for levels of vitamin D, calcium and magnesium? It is usually a lack of vitamin D that is at the heart of osteoporosis.

Chronic anxiety.

[CarlaB]

Leaky gut, as Rachel mentioned, causes malabsorption as well. Like Rachel, my food sensitivities stem from other underlying problems.

I agree with Ursa about vitamin D. I think that many of us northerners don't get enough sunshine. And when we do we're covered in sunscreen. I now try to get 15 minutes of sunlight daily with no sunscreen. I'm actually feeling much better. Google sunlight and health (or illness, etc.) and you will learn a lot. For example, the farther from the equator that you go, the greater percentage of people who are diagnosed with MS!

[Nancym]

I have found there are a lot of foods that give me the "D". Many sorts of seeds, maybe peanuts, gluten and casein for sure. Sometimes its just a matter of trial and error to find what it is. I think a key towards eliminating leaky gut is finding out what is causing the intestinal irritation and getting rid of that. Sometimes it is more than just one food.