New With A Gazillion Questions

[Kerasita]

Hello,

This is my first post.....I am in the midst of trying to figure out what myself (and my family) are intolerant to and have suspected for a while gluten issues might be the problem.

I have had vague stomach issues now and then (odd cramps, bouts of loose stools - sorry TMI) but nothing anywhere near incapacitating or even annoying. I do have the following things which I can't figure out the cause of:

*Unexplained aching leg MUSCLES, not joints, (calves and sometimes the muscle above the knee) since early childhood (always put down to growing pains by doctors. I have these at least twice a week, always have. I still have them now at 40, and occasionally in the lower arms). Have had MORE of them lately since going sugar and (predominately) gluten free.

*Bad period pain and late onset of menstruation (nearly 16) and late breast development (still waiting for that one LOL). In the last three years my cycle has become shorter - from 28 days to 23/24 days...doctor says it's perimenopause...I still think I'm too young even for that and these are symptoms of something, not just "the way I am". Also had tiny benign cysts in breasts at last mammogram.

*Had calcifium deposits on shoulder tendon. Malabsorption issue perhaps?

*Generalized anxiety disorder and general irritability. Have been the anxious type my whole life.

*Anaemia (low ferritin) with no discernable cause, discovered when I tried to donate blood (they wouldn

[mushroom]

Hello Kerasita, and welcome to the forum.

Many celiac/gluten intolerance symptoms are vague and confusing, for doctors and their patients. Doctors are inclined to dismiss them as irritable bowel syndrome or hypochondria, growing pains, a veritable pantheon of ambiguous diagnoses just to give the patient something to hang their hats on, but nothing that is going to particularly help them. Most doctors do not think of testing for celiac unless they are pretty much hit over the head with it, or the patient says, I think this is what I have, will you test me??

If I were you I would ask my doctor to test me, and I would also ask for the genetic test to see if you carry any of the genes predisposing you to celiac or gluten intolerance, so that you would know whether to test your children too. If you cannot convince your doctor, there is always the alternative of stool testing through Enterolab which gives the genetic information and also shows if you have gliadin antibodies (what the blood test measures) and intolerances to other foods. But try to persuade your doctor first.

Good luck with this process

[Kerasita]

Thanks so much for the quick reply Mushroom, much appreciated.

Is there a general consensus on which testing is more accurate? Because I've been doing'

the candida diet, I haven't been eating wheat and am kind of reluctant to start eating it again to do the blood test. Do you think bloods are better/more accurate a means of diagnosing? Or is the jury still out on that one?

I'm in Australia and shudder to think how much it would cost to courier the samples back to the US...so if the blood test is better, maybe I should try that first...

Thanks again

Kerasita

Hello Kerasita, and welcome to the forum.

Many celiac/gluten intolerance symptoms are vague and confusing, for doctors and their patients. Doctors are inclined to dismiss them as irritable bowel syndrome or hypochondria, growing pains, a veritable pantheon of ambiguous diagnoses just to give the patient something to hang their hats on, but nothing that is going to particularly help them. Most doctors do not think of testing for celiac unless they are pretty much hit over the head with it, or the patient says, I think this is what I have, will you test me??

If I were you I would ask my doctor to test me, and I would also ask for the genetic test to see if you carry any of the genes predisposing you to celiac or gluten intolerance, so that you would know whether to test your children too. If you cannot convince your doctor, there is always the alternative of stool testing through Enterolab which gives the genetic information and also shows if you have gliadin antibodies (what the blood test measures) and intolerances to other foods. But try to persuade your doctor first.

Good luck with this process

[mushroom]

Thanks so much for the quick reply Mushroom, much appreciated.

Is there a general consensus on which testing is more accurate? Because I've been doing'

the candida diet, I haven't been eating wheat and am kind of reluctant to start eating it again to do the blood test. Do you think bloods are better/more accurate a means of diagnosing? Or is the jury still out on that one?

I'm in Australia and shudder to think how much it would cost to courier the samples back to the US...so if the blood test is better, maybe I should try that first...

Thanks again

Kerasita

If you have been gluten free for more than a couple of weeks your blood testing would not be valid. Nor would the small intestine biopsy. I don't blame you for not wanting to go back on gluten if you have been gluten free for a while, because it would really be painful (and probably harmful). If I were you I would do the stool test through Enterolab. However, as I think about it, I think there could be a difficulty with the time it would take to courier a specimen to them. I did stool testing through a different lab when I was in the US and had to redo a specimen because delivery was delayed. I think that the specimen starts to degrade after a couple of days

So if there is no lab in Australia that offers stool testing (and I don't believe there is, but could be wrong), it looks like you really have to turn to the genetic testing. This can be done by a lab in Australia from a blood sample. At least if you found you had a celiac gene you could have your children tested for the same gene. I assume they have been gluten free too??

It really is a dichotomy, one I found myself in, and I opted just to self-diagnose and stay gluten free after 35 years of doctors telling me I had IBS or needed to see a psychiatrist.

[Kerasita]

Me again. I swear this is the last question!! So...if you have ANY sort of gluten sensitivity, it will show up in a blood test as a genetic anomaly? Is that how it works? And that is different than testing for antibodies or whatever that come up after consuming gluten foods?

Thanks so much for your help

[CSU Grad]

Hello,

This is my first post.....I am in the midst of trying to figure out what myself (and my family) are intolerant to and have suspected for a while gluten issues might be the problem.

I have had vague stomach issues now and then (odd cramps, bouts of loose stools - sorry TMI) but nothing anywhere near incapacitating or even annoying. I do have the following things which I can't figure out the cause of:

*Unexplained aching leg MUSCLES, not joints, (calves and sometimes the muscle above the knee) since early childhood (always put down to growing pains by doctors. I have these at least twice a week, always have. I still have them now at 40, and occasionally in the lower arms). Have had MORE of them lately since going sugar and (predominately) gluten free.

*Bad period pain and late onset of menstruation (nearly 16) and late breast development (still waiting for that one LOL). In the last three years my cycle has become shorter - from 28 days to 23/24 days...doctor says it's perimenopause...I still think I'm too young even for that and these are symptoms of something, not just "the way I am". Also had tiny benign cysts in breasts at last mammogram.

*Had calcifium deposits on shoulder tendon. Malabsorption issue perhaps?

*Generalized anxiety disorder and general irritability. Have been the anxious type my whole life.

*Anaemia (low ferritin) with no discernable cause, discovered when I tried to donate blood (they wouldn

[Kerasita]

I am aware there is no "cure all", I am just wondering if my symptoms are too "off the radar" to be classed as celiac symptoms.

I have spent many, many hours with doctors in the last ten years trying to figure out what is going on and unfortunately they don't have the answers, just want to give me/us drugs that only mask symptoms, rather than get to the root of the problem.

Thanks.

I am sorry for so many years of your suffering.

Please be aware that there is no single "cure-all" solution to such complex issues as you have experienced. You may or may not have celiac disease, but even if you do, it didn't cause all of those issues.

I would strongly recommend that you and your children spend some quality time with your physician(s) to sort out all of the other contributing factors.

[mushroom]

Me again. I swear this is the last question!! So...if you have ANY sort of gluten sensitivity, it will show up in a blood test as a genetic anomaly? Is that how it works? And that is different than testing for antibodies or whatever that come up after consuming gluten foods?

Thanks so much for your help

Well, no, that is not exactly how it works

Your body makes autoimmune antibodies to the gluten, which show up in blood work if you have been consuming gluten. If you have not been consuming any/much gluten, you will not have the antibodies in the blood. However, they do linger in the stool for longer and can often be picked up six months after you have stopped eating gluten, in a stool sample. The stool test can also pick up other food sensitivities.

Both the stool sample and a genetic blood test will measure whether or not you have one of the celiac genes which would give you a predisposition to develop celiac disease, but would not tell you whether or not you have it. The Enterolab test would also test you for the gluten sensitive/intolerant genes. Neither of these tests can tell you whether or not you actually have either of these conditions, just that you have the predisposition to develop them according to your genetic makeup.

It is all very frustrating, especially if you are in Oz without a stool testing lab. You will have to rely on the genetic blood test to try to verify that what you are experiencing is celiac, but it will not be conclusive.

[Kerasita]

Thanks so much, that clears it up for me very well!

I actually emailed Enterolab, and they do deal with international patients, I've just got to get the sample back to them via FedEx (which, of course, will be extortionately expensive, but I don't really think I have a choice because it literally has to get from Sydney to Texas overnight). I really don't want to start eating gluten again, nor do I particularly want a record in my medical files of a life-long autoimmune disease (if that's what it turns out to be) that may effect life insurance etc in the future (a bit dishonest, I know, but these companies look after their own backs and so must I) - and if I get the blood tests done it has to be through my own doctor.

For me, if I ended up testing positive for the gene, that would be enough to make me never eat gluten again. If you have the gene, and keep eating gluten, you're pretty much guaranteed to end up celiac, are you not? My other thought was that I could get my son to have the blood test, since he is still eating wheat (and he is my biggest concern), and if it turned out he did have it, it would be pretty obvious where it came from (me). But then again, that would have implications for him later on if he wants medical insurance/life insurance too?!! Arrggh!!

I guess I'll just stick with the Enterolab tests (might have to sell a kidney first to pay for it lol) and see what comes up there.

Thanks so much again, I can't tell you how grateful I am for your help.

Your body makes autoimmune antibodies to the gluten, which show up in blood work if you have been consuming gluten. If you have not been consuming any/much gluten, you will not have the antibodies in the blood. However, they do linger in the stool for longer and can often be picked up six months after you have stopped eating gluten, in a stool sample. The stool test can also pick up other food sensitivities.

Both the stool sample and a genetic blood test will measure whether or not you have one of the celiac genes which would give you a predisposition to develop celiac disease, but would not tell you whether or not you have it. The Enterolab test would also test you for the gluten sensitive/intolerant genes. Neither of these tests can tell you whether or not you actually have either of these conditions, just that you have the predisposition to develop them according to your genetic makeup.

It is all very frustrating, especially if you are in Oz without a stool testing lab. You will have to rely on the genetic blood test to try to verify that what you are experiencing is celiac, but it will not be conclusive.

[CSU Grad]

I am aware there is no "cure all", I am just wondering if my symptoms are too "off the radar" to be classed as celiac symptoms.

I have spent many, many hours with doctors in the last ten years trying to figure out what is going on and unfortunately they don't have the answers, just want to give me/us drugs that only mask symptoms, rather than get to the root of the problem.

Thanks.

I am sorry for so many years of your suffering.

Please be aware that there is no single "cure-all" solution to such complex issues as you have experienced. You may or may not have celiac disease, but even if you do, it didn't cause all of those issues.

I would strongly recommend that you and your children spend some quality time with your physician(s) to sort out all of the other contributing factors.

[CSU Grad]

Thanks so much, that clears it up for me very well!

I actually emailed Enterolab, and they do deal with international patients, I've just got to get the sample back to them via FedEx (which, of course, will be extortionately expensive, but I don't really think I have a choice because it literally has to get from Sydney to Texas overnight). I really don't want to start eating gluten again, nor do I particularly want a record in my medical files of a life-long autoimmune disease (if that's what it turns out to be) that may effect life insurance etc in the future (a bit dishonest, I know, but these companies look after their own backs and so must I) - and if I get the blood tests done it has to be through my own doctor.

For me, if I ended up testing positive for the gene, that would be enough to make me never eat gluten again. If you have the gene, and keep eating gluten, you're pretty much guaranteed to end up celiac, are you not? My other thought was that I could get my son to have the blood test, since he is still eating wheat (and he is my biggest concern), and if it turned out he did have it, it would be pretty obvious where it came from (me). But then again, that would have implications for him later on if he wants medical insurance/life insurance too?!! Arrggh!!

I guess I'll just stick with the Enterolab tests (might have to sell a kidney first to pay for it lol) and see what comes up there.

Thanks so much again, I can't tell you how grateful I am for your help.

Your body makes autoimmune antibodies to the gluten, which show up in blood work if you have been consuming gluten. If you have not been consuming any/much gluten, you will not have the antibodies in the blood. However, they do linger in the stool for longer and can often be picked up six months after you have stopped eating gluten, in a stool sample. The stool test can also pick up other food sensitivities.

Both the stool sample and a genetic blood test will measure whether or not you have one of the celiac genes which would give you a predisposition to develop celiac disease, but would not tell you whether or not you have it. The Enterolab test would also test you for the gluten sensitive/intolerant genes. Neither of these tests can tell you whether or not you actually have either of these conditions, just that you have the predisposition to develop them according to your genetic makeup.

It is all very frustrating, especially if you are in Oz without a stool testing lab. You will have to rely on the genetic blood test to try to verify that what you are experiencing is celiac, but it will not be conclusive.

[Kerasita]

Thanks CSU. This is so confusing...I usually think I have a reasonable amount of intelligence but I am struggling big time to get my head around this one!! (I suspect I'm not the only one, going by how often this topic is discussed!! )

So...would it be safe to say, if you just isolate the swab for the genetic test, that if you test positive there, that you are intolerant to gluten and should give it up for life? Or not? Would just about everybody have some genetic markers but are quite safe to consume gluten? I guess my point is, is there any point in having the genetic test at all? Or the fecal test? I've seen other discussions where people seem to think that "most" people come away from Enterolab with confirmation of some level of gluten intolerance...I'm not sure what to make of that??

I think I'm losing the plot!!

Thanks again!

Just to get a few things straight:

1) Your levels of antibodies are dependent on more than one thing. They are dependent on at least the following factors:

i) How much wheat gluten you ingest.

ii) To what degree your particular body reacts to that wheat gluten.

2) Your intestines have the highest concentration of these antibodies, which is why the small intestine biopsies are done. Therefore, they may be found, i.e. shed, in your feces. [The serology tests are done first to look for antibodies because it is far less invasive to your body to draw some blood than to take a small intestine biopsy. If the antibodies are found, or the test was not sufficiently descriptive, then the biopsy may be ordered to verify a diagnosis.]

3) The genetic test does NOT require a blood sample. Therefore it is NOT a "genetic 'blood' test". It is simply a "genetic test". A simple cheek swap is more than sufficient for this test, and does not require overnight shipment.

4) A feces sample will not determine if you have the genetic markers for celiac disease. This can only be done from the feces sample IF a DNA test, (yes the same DNA test referenced in number 3 above), is done on the intestinal cells present in your feces. The only thing that will typically be done with a feces test is to look for the presence of certain cells.

[pearcenalaska]

Hi Kerasita,

I am new to this board too and I am sure that your intelligence remains intact! All of this is like a foreign language! I am the same boat as you except I have just had my 8 yr old son and I blood tested (we are still waiting on results). I have been on a mostly gluten free diet for the last 6 months so I am a bit concerned. However, I know that my body does not like gluten so even if the test comes back negative I am NEVER eating it again! My son is a different story. I try to watch what he eats and pack his lunch and snacks but he cheats! I am hoping this will help with the test. What I am most concerned about are the other food allergies they tested me for. I don't eat dairy anymore either because WHOA does it tear me up! I love yogurt but it doesn't love me The goat is my friend because it seems that I can eat goat cheese and yogurt.

As a mother I would say that you have to go by your instinct and body reactions to what food you are eating and feeding your kids. My son complained of his stomach hurting for months, and months and we saw the pediatrician a couple of times and they thought it had to do with not enough bowel movements. My son poops enough. I am the one who decided to take him off of gluten. He hasn't complained since then. Also my youngest daughter has the rankest gas ever. Hard to believe that a 6 year old can clear a room. If our tests come back negative I am going to pursue the genetic testing for all of us. My husband needs proof as does the school (ridiculous). It can be a difficult thing to do and people do NOT understand. I get people trying to feed me gluten and dairy left and right. My husband has finally jumped on the wagon a bit and really does his best to accommodate our dietary needs.

[Kerasita]

Thanks Shannon

I guess because our symptoms are relatively 'non-typical' when it comes to whether or not we're gluten intolerant, it makes it so much harder - there is no explsive

diarrhea, no stomach pain, bowel issues to speak of, for my 10 year old sun his symptoms (if they are 'symptoms' at all, are all neurological. And me, I don't really have any tangible or recognizable symptoms from eating any particular food. Just these stupid, vague symptoms that could be related to 1000 other things, but then again maybe not I do have a very strong feeling, though, that wheat might be our enemy. My husband's vague intestine complaints have subsided since he's been (forced lol) to eat less bread. Says a lot really

I feel like I need "proof" too. My mother in law thinks I'm the most neurotic, anxious, nutbag of a mother who clearly just gets off on limiting her children's diet, that ever walked the earth, so I'd almost *like* to get that diagnosis, just so I can say "see!!!!" That is evil, I know (and I'm only kidding....sort of)

Hopefully we'll both have definitve answers soon (wouldn't that be lovely )

I am new to this board too and I am sure that your intelligence remains intact! All of this is like a foreign language! I am the same boat as you except I have just had my 8 yr old son and I blood tested (we are still waiting on results). I have been on a mostly gluten free diet for the last 6 months so I am a bit concerned. However, I know that my body does not like gluten so even if the test comes back negative I am NEVER eating it again! My son is a different story. I try to watch what he eats and pack his lunch and snacks but he cheats! I am hoping this will help with the test. What I am most concerned about are the other food allergies they tested me for. I don't eat dairy anymore either because WHOA does it tear me up! I love yogurt but it doesn't love me The goat is my friend because it seems that I can eat goat cheese and yogurt.

I

As a mother I would say that you have to go by your instinct and body reactions to what food you are eating and feeding your kids. My son complained of his stomach hurting for months, and months and we saw the pediatrician a couple of times and they thought it had to do with not enough bowel movements. My son poops enough. I am the one who decided to take him off of gluten. He hasn't complained since then. Also my youngest daughter has the rankest gas ever. Hard to believe that a 6 year old can clear a room. If our tests come back negative I am going to pursue the genetic testing for all of us. My husband needs proof as does the school (ridiculous). It can be a difficult thing to do and people do NOT understand. I get people trying to feed me gluten and dairy left and right. My husband has finally jumped on the wagon a bit and really does his best to accommodate our dietary needs.

[pearcenalaska]

I definitely understand what you mean! I think all my relations (in & outlaws )think I'm a little nutso about food & health. My sister and I have given me the nickname 'the food nazi' (no disrespect intended!) Because I am very much into natural & organic ingredients and the avoidance of all the chemical processed garbage out there. Not to say that I don't have any weaknesses, I do! The funny or ironic thing is that my husband is a junk food junkie. He has improved but I still have a long ways to go!

I see what you mean by vague symptoms. I never thought of it that way. We don't have the 'classic' symptoms but from reading on here it seems that the symptoms are all over the place! Talk about confusing! I bought the book Dangerous Grains and I would highly recommend it. It helped me see that I needed to seek professional advice and not just try to self manage because if I had celiac then there could be other damage. I swear sometimes I think it is more trouble than it is worth to eat! Most of the time my stomach can't decide whether it wants to digest my food or not! At least getting the blood tests is a place to start and I can figure out where to go from here. I have a good doctor and that is a start! Part of my problem is that I have a packed schedule and don't have time for an intestinal biopsy! My doctor suggested that in my list of options but I am not going back on a gluten diet to get it, at least not yet. I'll get the genetic testing done first and then go from there.

I am thankful that I found this forum to talk to others because it is such a scary and confusing journey.

[Kerasita]

LOL I have been called "that" name too! I would just like to know how trying, as best you can, to ensure your kids (and yourself) have a healthy future is bad or over the top?? I got into a heated discussion about this topic the other day with two friends banging on about how people they knew ate organic, didn't drink/smoke etc and died of brain tumors at 40 or whatever, and how I should not worry about it and just enjoy life. I'm sorry but I cannot "not" worry about it!!! I believe, no, I KNOW everything we put in our mouths dictates our future health and I can't just bury my head in the sand and hope for the best. But, they're on their journey and I'm on mine and there's not much you can do to convince people.

I am off to Amazon now to see if I can find Dangerous Grains. I've seen that name pop up a few times so I think someone's trying to tell me something Thanks!

Do you think the genetic test is conclusive enough? Is the one you're thinking of doing a mouth swab or a blood test. I know Enterolab do genetic testing but since I'm in Australia and they're in the US it's going to cost me a small fortune to get that done

I'm thankful too for this forum....what did we do without the internet??

Cheers

I definitely understand what you mean! I think all my relations (in & outlaws )think I'm a little nutso about food & health. My sister and I have given me the nickname 'the food nazi' (no disrespect intended!) Because I am very much into natural & organic ingredients and the avoidance of all the chemical processed garbage out there. Not to say that I don't have any weaknesses, I do! The funny or ironic thing is that my husband is a junk food junkie. He has improved but I still have a long ways to go!

I see what you mean by vague symptoms. I never thought of it that way. We don't have the 'classic' symptoms but from reading on here it seems that the symptoms are all over the place! Talk about confusing! I bought the book Dangerous Grains and I would highly recommend it. It helped me see that I needed to seek professional advice and not just try to self manage because if I had celiac then there could be other damage. I swear sometimes I think it is more trouble than it is worth to eat! Most of the time my stomach can't decide whether it wants to digest my food or not! At least getting the blood tests is a place to start and I can figure out where to go from here. I have a good doctor and that is a start! Part of my problem is that I have a packed schedule and don't have time for an intestinal biopsy! My doctor suggested that in my list of options but I am not going back on a gluten diet to get it, at least not yet. I'll get the genetic testing done first and then go from there.

I am thankful that I found this forum to talk to others because it is such a scary and confusing journey.

[nora-n]

If you google Ford gluten, there is a doctor in nz that specialises in glutens sensitivity. They have some tests there. He found the antigliadin IgG test is important re. gluten sensitivity, and it hangs around for a while after going gluten free but I would not bet on it.

[nutralady2001]

Hi Kerasita just want to say welcome.I'm in australia too, ( SA) we have a section the the international room ( look for it on the board index)

[nutralady2001]

Keraiste yu can have genetic testing in Oz, DQ2 and DQ8.

[Kerasita]

Thanks

Is the genetic testing you're talking about a blood test? Or is there another way? Don't really want to have the blood test because I don't want to start eating gluten again.

I can't seem to make a decision about which way to go with the testing!! Or to have it at all...

Keraiste yu can have genetic testing in Oz, DQ2 and DQ8.

[nutralady2001]

You don't need to be eating gluten for the genetic tesing only for the antibodies.

[nutralady2001]

PS ......... yes it is a blood test.

[Kerasita]

Of course...duh!! It's been a long day...can you tell.....lol

I find this whole testing thing so confusing. So are there varying levels of genetic predisposition? What I mean is, can some people have genes that suggest a mild intolerance to gluten but don't really need to stop eating gluten, and others who have really clear cut results that suggest celiac rather than just "sensitivity"? I've just read so many debates on this and I've heard some people say that *everybody* or most people at least, have some genetic markers that would suggest gluten sensitivity but shouldn't bother giving up gluten.

I am probably deluded thinking there is anything even vaguely this definitive I guess

You don't need to be eating gluten for the genetic tesing only for the antibodies.

[nora-n]

Hi, most diagnosed celiacs (I guess by biopsy) have DQ2, some of them have trans DQ2 which some labs miss, some have DQ8, and 6% have half a gene and 1-2 % have any of the other genes except double DQ4.

DQ7 adn DQ9 differ from the celiac gene DQ8 by one tiny base only. In Sardinia they found that lots of celiacs are DQ7 (but they fall into the half-DQ2 category as it is the 05* alpha chain that is responsible)

so overall, the gene test is often helpful. Not always.

Those celiacs with half genes or other genes still have to totally avoid gluten.

Often people after testing and it turns out negative, try the gluten free diet anyway and find out that

1. lots of things they did not think was connected get better, like body and joint aches, migraines, hidradenitis suppurativa, anemia,

2. when they accidentally ingest gluten they get lots of old symptoms back, or they get bloated or ill, or neurological symptoms.

[Kerasita]

Thank you for that, much appreciated.

Hi, most diagnosed celiacs (I guess by biopsy) have DQ2, some of them have trans DQ2 which some labs miss, some have DQ8, and 6% have half a gene and 1-2 % have any of the other genes except double DQ4.

DQ7 adn DQ9 differ from the celiac gene DQ8 by one tiny base only. In Sardinia they found that lots of celiacs are DQ7 (but they fall into the half-DQ2 category as it is the 05* alpha chain that is responsible)

so overall, the gene test is often helpful. Not always.

Those celiacs with half genes or other genes still have to totally avoid gluten.

Often people after testing and it turns out negative, try the gluten free diet anyway and find out that

1. lots of things they did not think was connected get better, like body and joint aches, migraines, hidradenitis suppurativa, anemia,

2. when they accidentally ingest gluten they get lots of old symptoms back, or they get bloated or ill, or neurological symptoms.