Sister's Test Came Back, Negative Help

[sandpiper]

Hi to all,

Please let me know with your testing and results with this being a 100% accurate. Our sister today just got the news that she is not a celiac, with the upper endoscopic/blood tests done last week. Are these always right? How often do they miss something? If she is not a true (autoimmune) celiac, then is she having a problem with gluten intolerance? How many of you out there have come across this? How long can they keep the blood and tissue ( they made a mistake and forgot to run the test and they were looking for something else, yikes scary, and so they had the blood/tissue for almost a week before the actual testing. When gluten intolerate do you have everything that can go along with like being a dx celiac?

Please let me know what you all think, this is a bit depressing as we thought this might be an answer finally.

Thanks to you all for your help,

Susie

[ksymonds84]

Was your sister gluten free prior to testing? This would definately cause a false negative. The tests are definately not 100%. If she would have gotten a positive blood test yes, its accurate but I read that a negative result is only 70% accurate. There are so many variables. I had a negative blood test (only one point below positive) but was already gluten light. My doctor being impressed with my dietary response diagnosed me with gluten intolerance based on the that alone. If being on a gluten free diet makes a difference then she has her answer imo.

[nannyb]

Susie

The tests are faulty at best. False negatives are very common. With the biopsy they could have tested the one healthy area or the lab tech didn't know what they were looking for. If your sister improves on the gluten free diet then that is answer enough. Someday they will have better testing. I would never recommend someone continue consuming gluten until the damage is evident. Oh yeah, that is exactly what my doctor suggested.

If people with DH (Dermatitis Hep...) spelling?? can be diagnosed without intestinal damage then the disease of gluten intolerance does not need it to exist. Since my main problems are neurological in nature I don't see how that has to relate to the villi in my intestine.

Blood tests also have a high false negative. Both my children came back negative. We didn't do the biopsy on them and both made the decision to remain gluten free since they feel so much better. They are now 17 and 20 so I left that decision to them.

Ultimately our responsibility for our health falls to us. If gluten free living gives a better quality of life than it is worth it. Being healthy is great after so many years of being sick regardless of what my doctor's contend. I know me. I know that I feel better gluten free and there is no test in the world that will convince me otherwise.

About one-third the people in my Celiac support group diagnosed themselves or have had experiences with false negative testing.

Nanny B.

[gfpaperdoll]

I am double DQ1, gluten intolerant - it is not going to show up on a "celiac" test until you are nearly dead... Gluten Intolerance can attack you neurologically and thru all your other organs before it messes with the guts...

the dietary trial is the ultimate true test.

[sandpiper]

I am double DQ1, gluten intolerant - it is not going to show up on a "celiac" test until you are nearly dead... Gluten Intolerance can attack you neurologically and thru all your other organs before it messes with the guts...

the dietary trial is the ultimate true test.

Hi gfpaperdoll,

Thanks for your return. How do they test for the DQ1? Is this by blood? Is it always a accurate result? What I quess I am understanding is that your neurological symptoms are the same as one would have with being dx as a celiac, with the damage to your nerves and the nutritional deficiencies that go together? What kind of neurological symptoms were you having? I don't think that our sister was actually eating too much gluten for some time. I would mention though that she has been following the Hallelujah diet which has one eating their products that are barley (barley max) which for me still is a bit disconcerning always hearing that barley is a no-no for us. The company does state though that this product is gluten free as the barley is harvested before it goes to grass. Does this sound right to you? I wonder if anyone here has heard or tried this?

I totally agree with so many here that trial and error go together with this disease and intolerance as so many food intolerances can and do have the impact on our daily health.

Thanks again, and wait back for your input.

Susie

[sandpiper]

Susie

The tests are faulty at best. False negatives are very common. With the biopsy they could have tested the one healthy area or the lab tech didn't know what they were looking for. If your sister improves on the gluten free diet then that is answer enough. Someday they will have better testing. I would never recommend someone continue consuming gluten until the damage is evident. Oh yeah, that is exactly what my doctor suggested.

If people with DH (Dermatitis Hep...) spelling?? can be diagnosed without intestinal damage then the disease of gluten intolerance does not need it to exist. Since my main problems are neurological in nature I don't see how that has to relate to the villi in my intestine.

Blood tests also have a high false negative. Both my children came back negative. We didn't do the biopsy on them and both made the decision to remain gluten free since they feel so much better. They are now 17 and 20 so I left that decision to them.

Ultimately our responsibility for our health falls to us. If gluten free living gives a better quality of life than it is worth it. Being healthy is great after so many years of being sick regardless of what my doctor's contend. I know me. I know that I feel better gluten free and there is no test in the world that will convince me otherwise.

About one-third the people in my Celiac support group diagnosed themselves or have had experiences with false negative testing.

Nanny B.

Hi Nanny B,

Thank you for your return post and your input with your experience and family's dietary responses ( which I am glad to read are favorable).

What you wrote is also what I was thinking about the lab and their responsible job on their end of testing and handling the tissue/blood samples. I don't think that our sister has been eating too much gluten, she has followed the Hallelujah diet for a few months. One thing as I just posted and mentioned, they have a product that is a barley max and they do say that this is a gluten free supplement. This is a continual learning thing for me, but I have always thought that this is a big problem as the wheat and rye, I do understand that oats might be okay for some if handled right. What do you think of this?

Sadly I don't know if she will follow this diet now as the test have given her the so called answer, and she will probably not be concern now that this is going on and she will not investigate any further. If I might ask what kind of neurological symptoms were you having?

With myself I was tested after challenging the gluten back in last year and it was negative (by blood), but I had been gluten free for a couple of years, and I do know now that you will usually not get a positive result by the blood if you have been off of the gluten that long, ( I also could not challenge it back in any longer than two weeks, I felt terrible), and I could not do the challenge any longer, which if it does show in the blood takes much longer. So yes if it feels better you know it is working. I do have graves disease and also had one of my parathyroids removed which puts me at a higher risk, as I carry the gene connection, also was dx with an melanoma back in the 90's which also has that celiac link. It is amazing how our bodies are effected and how it all ties together when connecting the dots.

Thanks again for your help and I am glad to read that you are feeling better after going through the years of being gluten and it's effects.

Susie

[sandpiper]

Was your sister gluten free prior to testing? This would definately cause a false negative. The tests are definately not 100%. If she would have gotten a positive blood test yes, its accurate but I read that a negative result is only 70% accurate. There are so many variables. I had a negative blood test (only one point below positive) but was already gluten light. My doctor being impressed with my dietary response diagnosed me with gluten intolerance based on the that alone. If being on a gluten free diet makes a difference then she has her answer imo.

Hi Kathy,

Thank you for your help and percentages, it does help to try and get a whole picture with the input of others and their personal historys. Our sister was not eating alot of gluten for the last few months, but was doing a barley max product from the Hallelujah diet that is supposed to be gluten free? Yikes is all I can say, I myself am not that brave to give it a try. Have you heard ( I have asked this already here) ) of anyone trying a barley that is stated gluten free, and if so if they have had any kind of negative reaction (s)?

When I get the (smallest amount) to being glutened I will have reactions, bloated feel like I have gained 3-4 pounds over night, and migranes. I quess for alot of us here we don't need the actual dx because we know that taking it out and staying away from it does the trick, and if we get some unkind remarks from family members in their unsupported interactions it is alot easier to "stomach" than doubting ourselves. Be true to yourself first, it is your body. Kathy, sorry to sound a bit on the defensive, quess I am feeling that for our sister and her health we are back to square one.

Best to you and to your health,

Susie

[Takala]

Hi gfpaperdoll,

Thanks for your return. How do they test for the DQ1? Is this by blood? Is it always a accurate result? What I quess I am understanding is that your neurological symptoms are the same as one would have with being dx as a celiac, with the damage to your nerves and the nutritional deficiencies that go together? What kind of neurological symptoms were you having? I don't think that our sister was actually eating too much gluten for some time. I would mention though that she has been following the Hallelujah diet which has one eating their products that are barley (barley max) which for me still is a bit disconcerning always hearing that barley is a no-no for us. The company does state though that this product is gluten free as the barley is harvested before it goes to grass. Does this sound right to you? I wonder if anyone here has heard or tried this?

I totally agree with so many here that trial and error go together with this disease and intolerance as so many food intolerances can and do have the impact on our daily health.

Thanks again, and wait back for your input.

Susie

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I looked at the "Hallejulah Diet" and it is a nearly all - raw foods, very little cooked, vegan vegetarian (no animal products whatsoever) diet.

I also looked at "Barley Max" and it looks like a rip off consisting of dried hay juice, as it's made of barley grass and alfalfa.

One human is supposed to eat 3 teaspoons a day of this Barleymax stuff, a tablespoon, or 15 ml, which is about a half ounce. I feed horses 2% of their bodyweight per day of regular hay to get their needed nutrients, or about 20 lbs of hay, if I were a horse, I'd eat about 3 lbs of hay a day. A half ounce to 48 ounces is what, about 1% of the total amount eaten, in other words, really not very much at all extra vegetative matter if the entire diet is vegan anyway. In other words, if I gave the horse a big extra handful of hay, that would be it as the equivalent. As you can see, not very much extra special nutrient at all. That's why horses have such long, complicated intestines and eat so much hay fiber, to extract the nutrients out of it.

They claim it's gluten free but I'm always sceptical of the claim that things like wheat grass juices and barley juices are "safe" for people with gluten intolerance. Yeah, technically, maybe, if they don't use any seeds in it...

But I do have the one horse who reacts to BARLEY GRASS big time out in the pasture, in addition to having the other rye and wheat family allergies. The wild grass was not labeled as "barley grass", I had to research the grass species names and families in a text book to make the connection. Getting this one horse healthy with a combination of veterinary testing and trial and error feeding and supplements, plus changing pastures, has probably taught me as much about the diet and the immune system as all the informal study I've done in all the other places. There is no "maybe" with a pet, they react or they don't and I've never had a vet tell me "There is no reason that Horse is half bald." They might tell me "we don't know for sure why he's scratching himself to death, but here's a list of things to try to change in his life and here's the blood antibodies test and let's see what we can do to make him more comfortable."

So what I'm wondering is, given how extremely difficult it would be to follow a "Hallejulah Diet" vegan diet, also as a gluten free diet, because the vegans I've talked to would find the idea very, very difficult to follow as they rely on grain for carbohydrate energy (yes, I know a few very dedicated people do this here and elsewhere, but there comes a time for some of us when we eliminate everything that we react to, we have not much left if we also go vegetarian, or we've tried vegetarian and we're such carb intolerant disasters we know vegan would be hopeless with this particular metabolism problem) .... anyway, I'm wondering how much wheat your sister eats in reality on this "Hallejulah Diet".

I'm making the assumption she tried this diet to feel better, but if she's trying to see if gluten free makes a difference, she has to actually go gluten free, if you get my drift, not "sorta gluten free" because gluten free is not the same thing as vegan or vegetarian.

I also have flunked blood antibodies tests (yay me, really, this deserves its very own icon, like a little blood test tube with the circle and the slash mark thru it ) and also have had the neuro problems in addition to other problems, but I don't react as quickly or as violently to just eating something. I'm pretty sure if I could just afflict everybody here with a round of some of what I used to feel neuro- wise for a day or two, it would be sufficient motivation that most people would NOT no how no way want to cheat if they thought they could avoid that again. . Numbness, pins and needles in hands, feet, dead foot with no feeling, loss of balance, dizziness, unable to focus eyes well, couldn't cordinate hands well enough to touch type, extreme weakness and lack of coordianation in the hands/arms. And that's just the neuro stuff.

Just because somebody flunks the tests doesn't mean they don't have some sort of food intolerances. If you have a relative that is a known intolerant to something, chances are good that others in the family also have intolerances, BUT, not necessarily to the same thing. I would not trade this for some of the other wierd food allergies that my siblings/cousins have, I think this is not nearly as big a nuisance as an egg allergy, for example.

[ravenwoodglass]

I am double DQ1, gluten intolerant - it is not going to show up on a "celiac" test until you are nearly dead... Gluten Intolerance can attack you neurologically and thru all your other organs before it messes with the guts...

the dietary trial is the ultimate true test.

I am DQ3 but this also applies to me. If I had waited to show positive on a blood test I would be dead. The DQ stuff is the gene testing results. When I was tested they considered only 2 genes DQ2 and DQ8 to be 'celiac' genes. They have now found 7 more. Celiac really is a spectrum disease and I hope they start to recognize it as such soon. For many the damage to brain and other organs can be really severe before the GI stuff shows up as more than an annoyance. I suffered terribly from the neuro, joint and skin effects for at least 25 years before the GI stuff appeared. My celiac gene is considered an RA gene here. If they had gene tested me before I had gone gluten free they would have diagnosed me with RA and never looked any further. I am very thankful I was already diagnosed before gene testing was done. I would be in a wheelchair and still in constant pain and all doped up otherwise.

[nannyb]

Susie

Since you asked the neurological issues were mostly related to what most people consider carpel tunnel type of symptoms. For fifteen years I slept with wrist braces to ease the pain in my wrists hands, arms and shoulders. Some of those years I wore braces 24/7. It was painful to type and using a mouse was difficult and painful as well.

I was also getting arthritis in my joints in my hands, shooting pains up my arms and weakness in my elbows particularly.

The brain fog is the other big area which included the inability to concentrate enough to put things into long term memory. I would have long conversations with people and not remember much about them later, like when I walked into the next room. Bad news. Not remembering what someone asked on the phone long enough to type it into the computer was another problem. As I was in my early 40's at the time, that was downright scary.

I went on the diet to control some IBS issues and all the rest disappeared as well. I was not expecting it and had not realized that it could even be related.

I know it is related since those are the very symptoms that return when I have accidentally ingested gluten, there is no way I would do it intentionally.

So I threw the wrist braces away, haven't needed them since being gluten free. Even the gluttening which can be painful is not to the point of needing them.

[fedora]

sandpiper,

I am curious about the melanoma - celiac connection. my grandmother who has has every symptom that I have(don't know about joint pain) has had melanoma for 12 years. I just told the dermatologist about her. He thought the drs. must of got it early enough. I said, no, she still has it. He though I must be mistaken. I am not. She has coexisted with it(it's winning though) for 12 years.

Anyways. I am curious since I am sure I get the gluten intolerance from her side of the family-rashes, constipation, irratable, emotional problems....

Just saw the dermatologist and my skin looks good!!! I told him wheat gives me rashes. He believed me. Suggested an allergist when I said I still itch all the time.

Good luck with your family

[sandpiper]

sandpiper,

I am curious about the melanoma - celiac connection. my grandmother who has has every symptom that I have(don't know about joint pain) has had melanoma for 12 years. I just told the dermatologist about her. He thought the drs. must of got it early enough. I said, no, she still has it. He though I must be mistaken. I am not. She has coexisted with it(it's winning though) for 12 years.

Anyways. I am curious since I am sure I get the gluten intolerance from her side of the family-rashes, constipation, irratable, emotional problems....

Just saw the dermatologist and my skin looks good!!! I told him wheat gives me rashes. He believed me. Suggested an allergist when I said I still itch all the time.

Good luck with your family

Hi Fedora,

Hope that I can give you some insight on this as I just looked into the link a couple of weeks ago. I went with our youngest son to the dermatologist for a mole we were concerned about, and the doctor asked if there was any melanoma in the family ( this was a new doctor, not the doctor that dx my melanoma back in the 90's). I told that I had a history of it and she asked if our son was biologically mine, I said yes, she then told us that it is not just by the exposure to the sun but also by the gene connection. Okay that got my mind in over-drive ( as it often does, which drives me nuts sometimes), and I went home and research it with just using those two easy words, celiac and melanoma and it said that you are at risk just as the risk for having the small bowel cancers, etc, we have all learned about with this disease. I am not saying that this is what one should conclude is the cause and effect but you know it does help you try and understand why (as myself) have had so many experiences with my health over the years. I also read that hyperparathyroidism which is actually quite rare puts one in the same class with the risk and association with celiac, I have graves disease also. So when you add it all up it starts to make some sense.

Has your grandmother been dx with celiac? I was tested too late, as I learned after the fact going gluten free for a couple of years and putting it back in was a negative blood result. I do want to get the gene testing, and not just for myself, but for our sons and their health and grandchildern. It is amazing the generation to generation loop that can take place and how we can start to help this end of it with our own awareness and final dx. You know even if I am not a true celiac, and gluten intolerant, this for myself is enough of a dx, but for the rest of my family I still will try and do the best in ruling out all the rest to help them, and I will try to learn as much as my mind will let me ( have a hard time doing this, wish I could retain things better).

I am glad to hear that you got a good report back for your concern with the melanoma and please let me know if your grandmom is dx and following a gluten free diet, the best to her, as melanoma is pretty scary.

Take care, also I love your picture it is very beautiful,

Susie

[ksymonds84]

Hi Kathy,

Thank you for your help and percentages, it does help to try and get a whole picture with the input of others and their personal historys. Our sister was not eating alot of gluten for the last few months, but was doing a barley max product from the Hallelujah diet that is supposed to be gluten free? Yikes is all I can say, I myself am not that brave to give it a try. Have you heard ( I have asked this already here) ) of anyone trying a barley that is stated gluten free, and if so if they have had any kind of negative reaction (s)?

When I get the (smallest amount) to being glutened I will have reactions, bloated feel like I have gained 3-4 pounds over night, and migranes. I quess for alot of us here we don't need the actual dx because we know that taking it out and staying away from it does the trick, and if we get some unkind remarks from family members in their unsupported interactions it is alot easier to "stomach" than doubting ourselves. Be true to yourself first, it is your body. Kathy, sorry to sound a bit on the defensive, quess I am feeling that for our sister and her health we are back to square one.

Best to you and to your health,

Susie

Hi Susie,

I didn't take you as defensive at all, just a loving sister. I am not familiar with barley max product but early in my trying to go gluten free I had a rice krispie bar thinking it was safe. I didn't know about the hidden barley in rice krispies and reacted a few hours later so it told me I had problems with barley as well. In the beginning stages I was wondering if it was only wheat and got my answer with that one! I feel like everyday I learn something new such as my minature reeses cups (easter ones) are not gluten free. Wondered why I was gassy after eating them so it can be very frusterating but feel that this board is a life saver to me. I think some of my family members think I am wacko now but I too feel that my body is telling me my answers so I just let them talk, they don't have to live with the symptoms. Sending positive thoughts to you and your sister.

Take care

Kathy

[gfpaperdoll]

Sorry for the delayed post - I have been out of it with a really bad cold...

The DQ1 gene test I got thru Enterolab.com - very reasonable cost & no doctors orders needed. They mail you a kit & it is a cheek swab. They are only one of two labs in the U.S. that test for the gluten intolerance genes in addition to the celiac genes.

Like ravonwoodglass that is double DQ3 - if you have two copies of the same gene- of any of them - you generally will have worse symptoms that if you have two different ones.

If we had tested thru another lab we would have been completely missed on the gene front also...

which is still happening to a lot of people

I was lucky (unlucky?) in that I had a lifelong problem with food allergies, so I was used to giving up whole groups of foods & living on tuna fish & rice & green beans & cooked carrots...

I tested allergic to barley & oats & a LOT of other foods when I was 25. (I am now 61) Then 14 years ago I met a lady that had celiac - at work - & she told me that if I would give up wheat that my other food allergies would get better & I would have more energy. well, I thought that was a really bad idea because that was about all I was eating - I was allergic to beef, pork, corn, potatoes, tomatoes, citrus, all sodas, tea, coffee, green peas, cod fish, mushrooms, barley, oats, peaches, black pepper, etc etc etc. But at 45 I was living on antibiotics for bladder infections & ear infections & sinus infections - you name it - I got it, shingles...

So I was desperate, & gave up wheat & OMG my energy level went thru the roof & the bladder infections stopped - so of course I did not have a computer then & assumed I was allergic to wheat. I preceded to eat it on holidays - get sick etc. Then 4 years ago I was researching hemochromatosis on the computer (it runs in my family) & OMG it is also connected to celiac - I got to reading & it was like an open book of the health history of my family for generations.

Thank goodness I had an underlying distrust for doctors & never let them put plastic urethers in me to replace my damaged ones - which are fine now, or I would be dead by now. I missed out on most of my life because I was either sick or too tired. I have underlying health issues but nothing major. I always had some underlying depression that I could never put my finger on, but kept it under control by exercising most of my life. Now I take B12 & life looks rosy - & the colors do look happier when you are on B12!!!!!

So if anybody wants to know if eating a little gluten will hurt you, for myself I can say yes it does. I did it for a long time, thinking it was just an allergy, & suffered the consequences. Now I am mostly grain free, dairy free, corn syrup free, soy free, beef free, no white potatoes, & very little white rice, & study nutrition and adjust my diet periodically - it is a journey, all cannot be done in one week...

[sandpiper]

Sorry for the delayed post - I have been out of it with a really bad cold...

The DQ1 gene test I got thru Enterolab.com - very reasonable cost & no doctors orders needed. They mail you a kit & it is a cheek swab. They are only one of two labs in the U.S. that test for the gluten intolerance genes in addition to the celiac genes.

Like ravonwoodglass that is double DQ3 - if you have two copies of the same gene- of any of them - you generally will have worse symptoms that if you have two different ones.

If we had tested thru another lab we would have been completely missed on the gene front also...

which is still happening to a lot of people

I was lucky (unlucky?) in that I had a lifelong problem with food allergies, so I was used to giving up whole groups of foods & living on tuna fish & rice & green beans & cooked carrots...

I tested allergic to barley & oats & a LOT of other foods when I was 25. (I am now 61) Then 14 years ago I met a lady that had celiac - at work - & she told me that if I would give up wheat that my other food allergies would get better & I would have more energy. well, I thought that was a really bad idea because that was about all I was eating - I was allergic to beef, pork, corn, potatoes, tomatoes, citrus, all sodas, tea, coffee, green peas, cod fish, mushrooms, barley, oats, peaches, black pepper, etc etc etc. But at 45 I was living on antibiotics for bladder infections & ear infections & sinus infections - you name it - I got it, shingles...

So I was desperate, & gave up wheat & OMG my energy level went thru the roof & the bladder infections stopped - so of course I did not have a computer then & assumed I was allergic to wheat. I preceded to eat it on holidays - get sick etc. Then 4 years ago I was researching hemochromatosis on the computer (it runs in my family) & OMG it is also connected to celiac - I got to reading & it was like an open book of the health history of my family for generations.

Thank goodness I had an underlying distrust for doctors & never let them put plastic urethers in me to replace my damaged ones - which are fine now, or I would be dead by now. I missed out on most of my life because I was either sick or too tired. I have underlying health issues but nothing major. I always had some underlying depression that I could never put my finger on, but kept it under control by exercising most of my life. Now I take B12 & life looks rosy - & the colors do look happier when you are on B12!!!!!

So if anybody wants to know if eating a little gluten will hurt you, for myself I can say yes it does. I did it for a long time, thinking it was just an allergy, & suffered the consequences. Now I am mostly grain free, dairy free, corn syrup free, soy free, beef free, no white potatoes, & very little white rice, & study nutrition and adjust my diet periodically - it is a journey, all cannot be done in one week...

Hi gfpaperdoll,

Also sorry for this delay, and do hope that you are feeling better from your cold, this has been a harder seaon than most for alot of us, ( even if we are doing better things for our bodies with our diets), it is hard to dodge the bullet.

Enterolab, sounds like the place to start for some answers that have been having us go in circles for way too long, and I agree with so often not getting anywhere with the medical field and them dismissing our symptoms and going just by the experience and labs. It really sounds as if you have been through so much, and I do feel for your hardship for those years. Did you also use the enterolab for your other food intolerances, if so, what kind of testing did they use for that?

I find it very interesting to connecting the dots with our family's history and the way it can come into play with celiac disease. The condition of hemochromatosis and celiac and you doing the researching with the link, wow, I love how we all are finding these possible diseases/connections. I was also doing some reading and found the melanoma association and hyperparathyroidism (which is rather rare), just wish for us all that the doctors would start to do some of these researches with the history of the patient and looking into the celiac tie. Maybe this will happen in the future with celiac coming into the forefront these past couple of years, and to stop the suffering.

So right about really getting into one's health and the importance of what goes in and the effects, short and long term, it is about the body being in balance and check, and our bodies are so amazing with their ability to heal when we don't get in our way, and stop and listen, to know our own body and just be centered with it, is steps of the continual journey to being true to ourselves and to our very essence.

Take care, and I am very happy for you that you are feeling so much better,

Susie

[fedora]

Susie,

Thank you for your response. Your words were sweet and caring. I am sorry. Usually I check my posts to see if anyone replied to my questions. Hopefully you will come back and read this.

I looked up melanoma and celiac and read about the connection. The doctor did tell me with my family history I need to get checked every year. Plus I am very fair with blue eyes. Now I know about the celiac melanoma connection too.

I have only figured out my gluten intolerance this winter. I knew I had problems with wheat for many years though. I have not talked to my grandmother about it yet. I should though. She was a RN for 30 years and is really brillant medically. No one in my family has ever thought they had a food intolerance or allergy(just drug and pollen allergies), but we are full of problems. So no one is on a special diet but me(and my children are just now starting). My grandmother, sadly, is not well. She has outlived her life expectancy by many years already. She is 85 now and has had melanoma for 12 years. The cancer is throughout her body. So going gluten free would not help her at this point I think. It may make her feel better though. She is ready to go.

I also do not have a real diagnose. I do live where food intolerances are very accepted though. My drs have no problem with me saying I am gluten intolerant. As my dermatologist said, if it makes you sick or gives you rashes, don't eat it. Wise words.

The family history and connecting it all is interesting. This grandmother and I are so much alike. Her son, my dad, almost died when I was 12 from a bad intestinal infection. However, my other grandmother died when I was 12 from Nonhodgkins lymphoma. Her daughter, my mom, has joint pain, and bowel problems. I did the genetic testing through enterolab. My results were DQ2 type 2(the non celiac, but definately gluten intolerant DQ2 gene) and DQ5. In a European study, 4.5% of celiacs had one of these two genes or both. I don't know if I have celiac or just horrible gluten intolerance. It doesn't matter to me. I have had symptoms for 22 years and at times have been so terrible ill. I have had almost every kind of symptom possible at some point or another. I am done with gluten forever.

My picture is by the artist Josephine Wall. I am glad you like it.

Take care,

[gfpaperdoll]

sandpiper, I would encourage you to check out Enterolab.

Re food testing for allergies, it was many years ago - about 36 years ago, & I had the pricks under the skin - I am not sure what the best allergy tests are now...

there was an article on the home page here at celiac.com recently about double DQ2 genes & melanoma & I think diabetes... i think melanoma responds very well to a gluten free diet - or so it seems that I have read that somewhere.

I have a friend that melanoma runs in their family - she was all over that information & is now gluten-free & has been tested thru Enterolab, I think that she was DQ1 & DQ3. Her elderly aunt has melanoma & she has had her on a gluten-free diet also... My friend thinks that her deceased mother had undiagnosed celiac and DH...

wishing you all the best in your journey to better health - & yep, this year's cold & cough season was a bummer!!!

[nora-n]

..... I did the genetic testing through enterolab. My results were DQ2 type 2(the non celiac, but definately gluten intolerant DQ2 gene) and DQ5. In a European study, 4.5% of celiacs had one of these two genes or both. I don't know if I have celiac or just horrible gluten intolerance. It doesn't matter to me. ....

What do you mean with DQ2 type 2? I never heard of that one.

nora

[fedora]

Hi nora,

There are two types of DQ2 genes: DQ2.5 and DQ2.2

DQ2.5 is known as the Celiac gene. It is DQ A0501 B0201. People call this the DQ 2 gene. When gene testing was done through blood work only, the two DQ genes showed up the same. But when they began to look at it molecularly, they saw there are actually three subtypes. DQ2.3 is very rare though. DQ2.2 is DQA0201 B0202. It is not the Celiac Gene, but it does respond to gluten.

When scientists looked at these molecules they saw that they both react to gluten. But DQ2.5 does more. DQ2.2 does elicit as strong of a response so is much less likely to manifest into Celiac Disease. They say it lacks the ability to manifest enough antibodies to cause intestional damage. This is because it does not have the A0501 part of the gene. The B(beta) parts of the two DQ2 genes act almost identical. However,in some rare instances, they admitted DQ2.2 alone can manifest into celiac.

When DQ2.2 and DQ7 occur in the same person(I believe this is correct), this creates the DQ 2.5 celiac gene. This is because the DQ2.2 gene has the beta part B0202 and DQ7 has the alpha part A0505(which works much like the alpha part A0501 in the DQ2.5 gene).

What I find very annoying is here is proof that gluten intolerance without celiac DOES exist, but most Drs want to see damage in the intestine. If they do not see it they do not think you can be gluten intolerant. ugh. Why would Celiac be the only manifestation of gluten intolerance/ Well it is not. Even if those antibodies do not reach the threshold to cause celiac intestional damage, they are still present causing damage.

In the European study I spoke of earlier, 4% of the Celiacs had DQ2.2, not DQ2.5. One third of those 4%also had DQ1 subtype 5(my other gene) which led the reseachers to speculate that DQ1 subtype 5 may play some role possibly in conjunction with other factors.

[nora-n]

Aha. I read those abstacts and understood the 2.2 gene as you describe it as half a gene like they describe it....

like in here:

Open Original Shared Link and some other links

(and the 2.5 gene is made up with half the dq1 gene, as described in some articles

Here they call it cis or trans position and have a diagram

Open Original Shared Link

and abigger version of the image Open Original Shared Link

nora

[fedora]

Good job with the links. I could have done that too, will have to think of that when my brain is not so crammed with junk. your two bottom links are in German? The first link is the same study I commented on.

mlo-online.com january 2006 has a pdf that was very helpful and clear explaining the genes and the combining of genes.

So I do not know my hubbies gene risk, but theoretically.... my kids could still have a celiac gene if my DQ2.2 combined with a DQ7. I just ordered my daughters test today.

[nora-n]

........ your two bottom links are in German? The first link is the same study I commented on.

mlo-online.com january 2006 has a pdf that was very helpful and clear explaining the genes and the combining of genes.

Norwegian. Sollid and Lundin have done some important research re. the genes in celiac. If you google the sollid group you might get some hits about the curresnt gene research, I think it is about other but realted issues right now. Should be some ares in pubmed too. www.pubmed.com

The medline links (medline=pubmed) are good for surfing, one just clicks show all related links and some more should poup if they ahve indexed them properly. Sometimes I notice the indexers do not quite think the way we do....

If you have some parts of the title and author of the mlo article , it should be easy to find it in pubmed.

maybe you could put your links comments in a blog? anywhere online?

nora

[Mango]

My daughter is gluten intolerant and she could NOT tolerate the barley max from Hallelujah Acres. She suffers from depression. She was doing great on the gluten-free diet and I decided to try the barley max. It clearly made her depressed again. Once she went off, the depression was gone again. So I am positive it was the barley max that was doing it.

[nora-n]

i suspect I am DQ1 subtype 5 (because of the neuro symptoms)

There are several DQ1 on the forums and they are often very gluten sensitive.

By the way, I read 2,5 as being DQ2 in one gene and 5 in the other....and I do not think they report which kind of DQ2 one has, as one would have to t the genes, and not just the expression....two different cookie forms (genes) make the same looking cookie (DQ2)

nora

[fedora]

nora,

I have the DQ1, 5(D5). I have definite neurological symptoms. My mood, vision, speech, and thinking are all effected. I have also many other symptoms. I use to have "spells" which were awful. I would not be able to think, would have to think very hard about what I was saying, and things would look further away then they really were. Sometimes It would make me sick to my stomach but not always. I have not had one at all since going gluten free. yea!!! My mood has stabilized a lot also. Yea!!!