Gluten Intolerent Or Celiac?

[georgie]

My blood test for Celiac is negative but I reacted to the Gluten Diet Challenge. Twice in the last 2 months since going gluten-free, I have eaten Gluten accidentally and have been ill with fatigue and stomach pains. My Dr says I don't have Celiac. But now - I am confused. Do I ?

[Guest Kathy Ann]

From what I've learned in my reading and on this board, celiac blood tests can be notoriously inaccurate when they are negative, but quite accurate when they are positive. And they are only positive when heavy damage has already been done. If you are in the beginning stages of damage, they can come out completely negative and confuse everybody. It's a dangerous situation when doctors then tell you to keep eating gluten.

I like the complete stool test from enterolab to sort it all out. But a lot of doctors WILL accept improvement after eliminating gluten as proof of a gluten problem. The only way to get an official diagnosis of actual celiac is to do the biopsy (while still eating gluten), which many on this board have chosen not to do. And again, if you are in the early stages, even it too can come out falsely negative.

It all comes down to decisions. You know yourself. If you need a bonafide diagnosis from the medical establishment as encouragement to adopt a lifelong gluten free lifestyle, then you should do that for your own sake. But if you think you can accept a "probabililty" of gluten sensitivity, evidenced by your dietary experiments, as enough proof to warrant the diet, then you can just begin the gluten free lifestyle immediately. We are all different in what we need to make such a drastic change.

[AndreaB]

Both gluten intolerant and celiac are gluten free for life.

Just depends on what you want as far as diagnosis, like Kathy Ann said.

[tracey*]

georgie, i haven't been diagnosed as celiac, but there is no way i'll go back to eating gluten just because someone has told me i'm not celiac.

do what is right & good for you and your body - don't worry about labels.

[georgie]

I guess a part of me still wants to have 'it' labelled. My family think its all in my mind and without proof - its hard to explain. I am 47 and have just had this happen. Could I have had Celiac all my life and not known about it ? I have been dx with Thyroid and low B12 this year and also GI. But I wouldn't have the biopsy now. No way could I go back to eating Gluten for weeks just to have a test done.

Is it worth having anymore blood tests ?

[suziew]

This is how my doctor explained it to me. I'm not celiac but I'm gluten intelorant. Which means I may be able to tolerate certain amounts of gluten before getting sick. I have the same symptoms as a celiac, but my villi doesn't get damaged. My doctor told me that I have to listen to my body and see what I can and can't eat. I can usually get by with a half a cookie and not get sick, but just a tsp. of gluten soy sauce, will make me sick for a week. It's just easier to avoid all gluten products all the time than trying to figure out how much I can tolerate.

[eKatherine]

I guess a part of me still wants to have 'it' labelled. My family think its all in my mind and without proof - its hard to explain. I am 47 and have just had this happen. Could I have had Celiac all my life and not known about it ? I have been dx with Thyroid and low B12 this year and also GI. But I wouldn't have the biopsy now. No way could I go back to eating Gluten for weeks just to have a test done.

I would say that if it's not good enough for your family that you've stopped eating something you were sure was making you sick - and you got better! - that you should just go about doing what you need to do. Even though you go through with as many tests as they can run, they may all come up negative, but you will still need to avoid eating gluten if it makes you sick.

[Guest nini]

my personal opinion is that gluten intolerance is just celiac in the early stages... that if you continue to eat gluten eventually you would have full blown celiac. (again, just my opinion and I'm not a Dr. nor do I play one on TV)

[Nooner]

Is it worth having anymore blood tests ?

I had a similar situation, I found out through an elimination diet I was sensitive to gluten, but the blood tests came back negative. My doctor said it couldn't possibly be celiac and wanted to treat me for IBS. Oh, and she said I should eat as much gluten as I wanted. I fired her.

I felt comfortable with just going gluten free, but my husband was worried it might be something more serious. I knew I couldn't go back on gluten long enough to have a biopsy. So I called celiac support group leaders in my area, and one of them knew of a gastroenterologist who accepted enterolab results. I got the enterolab test, my results are in my signature. And I saw the GI, who diagnosed me with celiac. My GI had me do a DEXA scan for bone density which came back positive for osteopenia. He also had me tested for thyroid problems and vitamin deficiencies, all negative. Oh, and he ordered the celiac panel blood tests again. Still negative.

My GI says that even though I've only been symptomatic for the last 5 years, I've probably had this my entire life. And the fact that I have osteopenia at 37 makes me agree with him.

So yes, I can see the need for some doctor verification, and in my case, getting a diagnosis caught the osteopenia while I can do something about it.

I think if I were you I would skip the blood tests. They've already come back negative, why bother with it again? If you do any further testing, order the Enterolab tests. It's a chunk of money, but the peace of mind is worth it. And you might want to find a different doctor. There are good ones out there, but it can take some effort to find them. If you call your celiac local support groups, they may be able to help you find one.

Oh, and I think you should keep up the gluten free diet. Don't argue with your body, it knows what's good for it!

Just my personal opinion...

[Nevadan]

Re having more testing to get an "official" dx, one thing you might want to consider is the negative effect of having a positive dx in your official medical records. Should you ever have to buy your own health insurance, you will likely find this to be a huge disqualifier, or at least something that will increase your premiums significantly. Just a thought.

[JenKuz]

I guess a part of me still wants to have 'it' labelled. My family think its all in my mind and without proof - its hard to explain. I am 47 and have just had this happen. Could I have had Celiac all my life and not known about it ? I have been dx with Thyroid and low B12 this year and also GI. But I wouldn't have the biopsy now. No way could I go back to eating Gluten for weeks just to have a test done.

Is it worth having anymore blood tests ?

I second the Enterlab tests. They are the same exact tests as the blood tests except that they use fecal matter to test; this is more sensitive, because the antibodies they test for are made in the gut, not the blood. They also do a gene test, which is the most complete one available, I think. The gene tests are great because they can help you deduce the likelihood that your symptoms are autoimmune celiac, gluten intolerance, or something else, and they can help you interpret other test results, too.

From the vitamin B12, it sounds like malabsorption. I HIGHLY recommend taking a sub-lingual B vitamin complex. It will help with fatigue. And glucosamine sulfate and L-glutamine are both good for helping with repair of intestinal damage.

Now, thyroid problems are associated with celiac disease, but consider your symptoms carefully, because thyroid conditions can cause digestive problems on their own. Research those to find out whether you have additional symptoms that the thyroid alone can't explain.

Elimination diet is truly the best way to know whether you have a gluten problem. The genetic tests will help you determine whether you'd be better off avoiding wheat. But in the meantime, the thyroid alone could explain why you'd do better having eliminated wheat (it gets confusing because often when people cut out wheat, they are simultaneously cutting out the primary sources of processed foods). If you get six months out or a year out on a wheat-free diet, and you're feeling better, and you've got your thyroid hormones sorted out, and you really want to know if wheat was the problem, you can do a self-challenge for a day or two, which is less painful than a three-month reintroduction and an intestinal biopsy.

The last thing I would say is that I came up negative through the blood tests. I took the Enterolab panel, and came up quasi-positive for gluten sensitivity and very very positive for malabsorption; you can see the results in my signature. Now, I'm in a bind, because I didn't do the genetic tests. I have a feeling that I might have something in addition to the gluten sensitivity; a genetic test would have helped me a lot. I'm schedule for a biopsy on Tuesday. If I'd had a genetic test come back, say, double positive for celiac, I'd probably decide to forego the biopsy and just stick with gluten-free. As it is, I feel I need the biopsy just in case. I've sent away for the gene panel, but the results won't come in in time for me to decide on the procedure one way or another. So, you see, the Enterolab tests can be taken as conclusive if you want, but even if you don't take them as conclusive, they are really really helpful for helping determine a next course of actionl

[rez]

I second the Enterlab tests. They are the same exact tests as the blood tests except that they use fecal matter to test; this is more sensitive, because the antibodies they test for are made in the gut, not the blood. They also do a gene test, which is the most complete one available, I think. The gene tests are great because they can help you deduce the likelihood that your symptoms are autoimmune celiac, gluten intolerance, or something else, and they can help you interpret other test results, too.

From the vitamin B12, it sounds like malabsorption. I HIGHLY recommend taking a sub-lingual B vitamin complex. It will help with fatigue. And glucosamine sulfate and L-glutamine are both good for helping with repair of intestinal damage.

Now, thyroid problems are associated with celiac disease, but consider your symptoms carefully, because thyroid conditions can cause digestive problems on their own. Research those to find out whether you have additional symptoms that the thyroid alone can't explain.

Elimination diet is truly the best way to know whether you have a gluten problem. The genetic tests will help you determine whether you'd be better off avoiding wheat. But in the meantime, the thyroid alone could explain why you'd do better having eliminated wheat (it gets confusing because often when people cut out wheat, they are simultaneously cutting out the primary sources of processed foods). If you get six months out or a year out on a wheat-free diet, and you're feeling better, and you've got your thyroid hormones

sorted out, and you really want to know if wheat was the problem, you can do a self-challenge for a day or two, which is less painful than a three-month reintroduction and an intestinal biopsy.

The last thing I would say is that I came up negative through the blood tests. I took the Enterolab panel, and came up quasi-positive for gluten sensitivity and very very positive for malabsorption; you can see the results in my signature. Now, I'm in a bind, because I didn't do the genetic tests. I have a feeling that I might have something in addition to the gluten sensitivity; a genetic test would have helped me a lot. I'm schedule for a biopsy on Tuesday. If I'd had a genetic test come back, say, double positive for celiac, I'd probably decide to forego the biopsy and just stick with gluten-free. As it is, I feel I need the biopsy just in case. I've sent away for the gene panel, but the results won't come in in time for me to decide on the procedure one way or another. So, you see, the Enterolab tests can be taken as conclusive if you want, but even if you don't take them as conclusive, they are really really helpful for helping determine a next course of actionl

[/quo

I find you to be very bright and knowledgeable and feel that your posts are very beneficial to us all. Here's where I stand: My son tested positive for gluten and casein sensitivity. He also has a double copy of the DQ2 gene. The diet is hard when you take out gluten, casein, and now possibly soy. I switched him to soy this week and he's gone back to restless sleep and crying before bed saying someone's going to break through his window and grab him in the night. This just started this week. Does anyone know anything about the Elisa test and is it worth it to have that done and see how it compares w/ Enterolab. I thought the Enterolab would be enough for me, but I still feel as if I'm reaching for more. I hope that Dr. Fine publishes his journals by this time next year or I may become a skeptic. I want to believe in him, but I also have this small part of me that is doubtful. My husband and I are getting stressed at each other. He wants me to let the obsession go, but he's not the one constantly shopping and cooking! Anyway, advice would be great! Thanks. Ps, I would love to know where the GI is located that validates Enterolab. Maybe he could spread the word.

[CarlaB]

Dietary response is a valid diagnostic tool. My doc accepts it .... I wouldn't worry whether you have celiac or not as you definately have a problem with gluten. You don't really need to know whether it's a disease called celiac or one called gluten intolerance since they both make you sick! I agree with Nini, there are various levels of damage. It's not like you wake up one morning with later stages of celiac! I think further blood tests would be useless since you're gluten-free. Enterolab is still a possibility for you if you really need a test to prove you're not crazy. I needed that, but then realized, no one else cared ... the ones who think I'm crazy, still think I'm crazy.

[JenKuz]

Rez...it wouldn't let me quote you, so....

You said:

"I find you to be very bright and knowledgeable and feel that your posts are very beneficial to us all. Here's where I stand: My son tested positive for gluten and casein sensitivity. He also has a double copy of the DQ2 gene. The diet is hard when you take out gluten, casein, and now possibly soy. I switched him to soy this week and he's gone back to restless sleep and crying before bed saying someone's going to break through his window and grab him in the night. This just started this week. Does anyone know anything about the Elisa test and is it worth it to have that done and see how it compares w/ Enterolab. I thought the Enterolab would be enough for me, but I still feel as if I'm reaching for more. I hope that Dr. Fine publishes his journals by this time next year or I may become a skeptic. I want to believe in him, but I also have this small part of me that is doubtful. My husband and I are getting stressed at each other. He wants me to let the obsession go, but he's not the one constantly shopping and cooking! Anyway, advice would be great! Thanks. Ps, I would love to know where the GI is located that validates Enterolab. Maybe he could spread the word. "

Thank you so much, I'm glad you find me useful...but nearly everything I know about it, I've learned from others on this board I'm just a fast assimilator of information.

As for the tests, I've spent a few summers as a lab gopher, running thousands and thousands of ELISAs. The ones I did were for a different thing altogether, but I know how they work.

I would say that you're not going to get much more information from a blood test. You could have a positive blood test *confirm* a positive stool; that might make you feel better about the work and deprivation of the gluten free diet. Or, you could have a negative blood test, and it would mean absolutely nothing. And it would give you more doubts, probably unnecesarily.

The genetic epidemiologic evidence about DQ2 is pretty robust. We know that about 95% of people with celiac disease have the DQ2 allele. Of people *without* the disease, only 20% carry the allele. One might argue that some of those DQ2 + controls are asymptomatic and may still have some damage. In other words, there's a very strong link between DQ2 and celiac disease. Since your son is homozygous, that's a strong clue that he might do better in general without wheat in his diet.

But that doesn't mean other things won't also cause him problems. Villi damage makes it hard to digest a lot of things. General gut inflammation can allow a lot of food intolerances to develop through "leaky gut."

Lectins are another problem. Soy in particular could be hard, because it has lectins that can interact with human immune cells in the gut, worsening inflammation. They can do this whether or not the body has made antibodies to it; so a positive antibody test is a sign that you should avoid it, but a negative test doesn't mean it won't cause problems.

Now, as far as lectins go, there's a lot we don't know about them. We know that some are heat resistant, some are capable of activating immune cells, some can cause red blood cell death through "agglutination."

The tricky part is that lectins are all very very specific. Each lectin has it's own particular shape, kind of the same way antibodies do. So just because a plant has lectins in it, doesn't necessarily mean those lectins are the right shape to fit with human receptors. Much of this depends on genetics, too.

Some lectins, however, we *know* can activate human cells. The theory is that people with normal guts are protected through the action of certain kinds of antibody, so the lectins are deactivated, or kept away from the cells they might interact with, until they're digested harmlessly. Once you have a breach of the gut, however, as in the case of inflammation, ulceration, or food intolerance, then the lectins have access to certain cells and start to wreak havoc. The foods with these kinds of acitivity are the ones most likely to be implicated in common food allergies, as it happens, which makes perfect sense. These are: legumes, first and foremost, especially soy and peanuts; tree nuts; milk proteins; potatoes; and other nightshades, like peppers and tomatoes.

In theory, some of these foods might have to be avoided for life. Others may be causing problems only because the gut is damaged. If the gut heals, your son might be able to tolerate some of these foods again later on in life.

I would say, although it's difficult, it's a good idea to avoid soy and casein. The thing here is that if the lectin/damaged gut hypothesis is correct, then the symptoms should follow a "dose response" sort of pattern. That is, if your son eats a little, it will cause a little trouble; if he eats a lot, it will cause a lot of trouble. This is different from the wheat intolerance, where, as you know, even a microscopic amount can cause damage--*if* the autoimmune reaction has begun to take place. That's measured with ttg. Unfortunately, a negative ttg is inconclusive, so you don't know whether there's autoimmunity taking place or not, and with your son's genes, he's probably a candidate to avoid even tiny amounts of wheat, whatever the results of the tests.

Now, I am not at all an advocate of Dr. D'amado's blood type diet. I think he jumps to a lot of conclusions about lectins that haven't been tested properly yet. And his application of evolution theory is way off from a genetic standpoint, for reasons I wont' bother with here. However, his books do have a complete listing of foods with lectins that are known to have activity with human cells.

I would recommend this as a guide, if you're interested, to use for a little while until your son's intestines have healed, and then you can do single, selective introductions to see whether particular foods bother him. It's important to note that (IMHO) you shouldn't bother too much about the specific blood types; just the activity in general of each food. And also, you should know that responsiveness to these foods is bound to be genetically driven, so there are probably many of the foods in the book that your son will eventually be able to eat just fine. Just because a food has a lectin, doesn't mean it's specific to his genetically-coded receptors. It's just, with as little research as has been done on these proteins, it's virtually impossible to know which will cause problems for him without doing an elimination diet. After six months to a year of healing time, of course.

It's daunting. I can hardly keep myself to a diet. I can't imagine having to feed a whole family with so many restrictions! But it seems like feeding your son some of these foods now, may make him more sensitive to them in the future, while waiting for a while and feeding him a bland diet, may allow him to enjoy more things in the future.

Does that make sense? I hope it's been helpful. Check out Ursula's signature for good links on lectins.

[tracey*]

I've noticed georgie and I are both in Australia - do Enterolab do tests for Aussies?

I guess I better email them ... but let us know if you know!

[Ksmith]

Do you have to be eating gluten to get the Enterolab to work? Or can you already be gluten-free?

[AndreaB]

I believe enterolab with work with any foreign country but you have to pay overnight shipping charges back to them. Please check to make sure though.

You do not have to be eating gluten for enterolab tests.

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[georgie]

Thanks Tracey, That was going to be my next question

I am low in B12 and its probably Pernicious Anaemia which is also Autoimmune like my Thyroid. But no one has mentioned B6 testing. Do I just assume I am low in all vitamins and supp anyway? I am low in Vit D. My b12 shots are only lasting a week before symptoms return. Its been 12 weeks of weekly shots. Is anyone else like that or is it 'cos of Celiac that I am so low?

[tracey*]

georgie, EnteroLab emailed me back

Your Question: I was just wondering whether you offer services to Australian residents?

Response: Dear Tracey, Thank you for your inquiry. Yes, we do receive samples from Australia from time to time. You would simply place your order on our web site, and we would mail you a collection kit with instructions on how to obtain and return your sample. You would choose whichever courier service you wish to use to return the sample to the lab, but please know that our shipping charge only covers outbound shipping to the patient for international orders. We recommend using Federal Express to ship your sample to us, as we have fewer difficulties with them in getting biological specimens through customs. Please let me know if I can be of further assistance. Sincerely, Phyllis Zermeno, RN, BSN Clinical Manager

EnteroLab.com