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Karl Otto

I Had The Old Test For Celiac Disease

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About 7 years ago, the VA Hospital was giving out the old version of the test. Well, that is what the good old boys in Washington Board of Veterans Appeals state anyways. So, recently when, I applied for disability on it, the Borad of Veteans Appeals ask that I be given the newer tests. So, I contacted my VA Doctor again. She is the boss of her own medical clinic for my area of Denver CO. She just plain flat out refused to give me the newer tests for Celiac Disease. She said, no 1. you were given the older test which, in her opinion was not as reliabled as the newer celiac Panel test. No 2. she said, I have been gluten free for the past 7 years and, it would interfer with the current new test. No 3. The test cost too much at $900.00 a test and the US Government would not pay for it. No4. just because, my three sons have this disease does not mean, I have it anymore or ever. My ex-wives have been tested in the past and are negative. They also eat gluten products for years and no complaints on health. They are all in their late 40's and 50' year of age without any health complaints and, they eat lots of breads or other foods with gluten.

The Center For Disease Control tells me that Celiac Disease comes from the parents, mother and father of child with Celiac Disease. With that in mind, the VA Doctor still says, that is no indication or justification for me to go through the newer test again. Request for newer tests denied.

For the last three years this has been my diet. Is any part of this diet gluten in natural or is my current diet gluten-free complete. Dose the VA doctor have a point?

Organic Brown Rice with Husk on it boiled in plain water (Lundberg Rice)

Organic Chicken Breast, with no hormones, steriods, or processing chemicals

Organic Brown Lentils, boiled in plain water

Organic Peas, boiled in plain water

Strawberries, blackberries, blue berries

4 onces of Organic skim milk with each meal

I eat 6 small meals a day which works out to be every 4 hours

Would tis interfer with the newer Celiac Disease Tests ? Could the VA Doctor be right in not given out the newer test?

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About 7 years ago, the VA Hospital was giving out the old version of the test. Well, that is what the good old boys in Washington Board of Veterans Appeals state anyways. So, recently when, I applied for disability on it, the Borad of Veteans Appeals ask that I be given the newer tests. So, I contacted my VA Doctor again. She is the boss of her own medical clinic for my area of Denver CO. She just plain flat out refused to give me the newer tests for Celiac Disease. She said, no 1. you were given the older test which, in her opinion was not as reliabled as the newer celiac Panel test. No 2. she said, I have been gluten free for the past 7 years and, it would interfer with the current new test. No 3. The test cost too much at $900.00 a test and the US Government would not pay for it. No4. just because, my three sons have this disease does not mean, I have it anymore or ever. My ex-wives have been tested in the past and are negative. They also eat gluten products for years and no complaints on health. They are all in their late 40's and 50' year of age without any health complaints and, they eat lots of breads or other foods with gluten.

The Center For Disease Control tells me that Celiac Disease comes from the parents, mother and father of child with Celiac Disease. With that in mind, the VA Doctor still says, that is no indication or justification for me to go through the newer test again. Request for newer tests denied.

For the last three years this has been my diet. Is any part of this diet gluten in natural or is my current diet gluten-free complete. Dose the VA doctor have a point?

Organic Brown Rice with Husk on it boiled in plain water (Lundberg Rice)

Organic Chicken Breast, with no hormones, steriods, or processing chemicals

Organic Brown Lentils, boiled in plain water

Organic Peas, boiled in plain water

Strawberries, blackberries, blue berries

4 onces of Organic skim milk with each meal

I eat 6 small meals a day which works out to be every 4 hours

Would tis interfer with the newer Celiac Disease Tests ? Could the VA Doctor be right in not given out the newer test?

I also forgot, I do use Extra-virgin Olive Oil and Iodine salt with every meal in addition to the above meals.

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If you don't eat gluten, the test will be negative. Your doctor is right.

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In and of itself that diet should be gluten-free. However that assumes a gluten-free household, cutting boards, etc. But looking at your post there are three things that jump out a me immediately.

  1. Nutrition: That diet appears very questionable for nutritional content, especially given the boiled veggies. So I assume (hope) you are taking some nutritional supplements of some kind. These may not be gluten-free.
  2. Meds: Are your meds (if any) gluten-free? Many brands of OTC and prescription drugs are not gluten-free as wheat starch may be used in the binding agent or other inactive ingredients.
  3. Dairy: If you are casein sensitive (50% of celiacs are) you may be experiencing issues from that. Though apparently extremely rare I have seen a couple of references to vilii damage from beta-casein protein in dairy. Or you might just be experiencing issues that are non-damaging to your intestinal tract but harmful nonetheless. I cannot eat anything with casein derived from A1 beta-casein (which is most of the milk here in the US). I can drink A2 raw (unpasteurized) milk though.

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The ex-wives have been tested and found negative. They have other children after they left me and, those children are very healthy compared to the child or chidren they left in my care. The three sons, the ex-wives left me always have had problems with foods and health since they were born. I am the comon fact between my children. Though, they each had different mothers, I am the same father for all three boys. This makes me the carrier of the bad genes.

I am going to get the DNA test between me and my sons then, I am going to get a genes tests. Then, I am going to get a leter or statement stating that the disease comes from the parents of the children. Just maybe, the US Government will see these proofs and accept the original Celiac Disease test and, I can win my many cases for compensation. The money will go a long way in the future when it comes down to financial support for this disease. As everyone knows this Celiac Disease will become more expensive to up keep as time goes by.

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The ex-wives have been tested and found negative. They have other children after they left me and, those children are very healthy compared to the child or chidren they left in my care. The three sons, the ex-wives left me always have had problems with foods and health since they were born. I am the comon fact between my children. Though, they each had different mothers, I am the same father for all three boys. This makes me the carrier of the bad genes.

I am going to get the DNA test between me and my sons then, I am going to get a genes tests. Then, I am going to get a leter or statement stating that the disease comes from the parents of the children. Just maybe, the US Government will see these proofs and accept the original Celiac Disease test and, I can win my many cases for compensation. The money will go a long way in the future when it comes down to financial support for this disease. As everyone knows this Celiac Disease will become more expensive to up keep as time goes by.

I have never heard of a DNA test for celiac. The genetic test will not "prove" you have it, it will only assess your risk of having it. I don't understand why the original test was not sufficient proof. Do you have copies of your records from back then telling you what the test was that was done back then? You are fighting an uphill battle trying to get diasability for celiac disease that is for sure. There may be one or two people around this board that have gotten it, but it is very rare. I do wish you luck in your persuit. However, I do not see why celiac disease would become more expensive to keep up as time goes by.

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I had the old celiac blood test...I have celiac. My daughter had the newer DGP test...she has celiac. No doubt either one of us would get an off-the-chart positive on either test today. The gene test is not diagnostic and would prove nothing to the VA.

If my understanding is correct (and I think it is), compensation from the VA would be for a service-connected disability, not for something you have had since birth.

I do not believe having celiac will become more expensive as time goes on. But then I cook, don't rely on expensive gluten-free prepared foods and take no meds related to celiac except for vitamin supplementation, which can be picked up at most every drug store or Wal-Mart.

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Are you trying to get military diability? I think you might be good for Social Security Disabilty. From what I understand with that is that you have to apply. Then they deny every claim. Then you have to get a special lawyer & re-file.

I don't see that the military would owe you anything. As you have stated on here many times, you have had this your whole life. This was not caused by military service. You have even stated that you have witnesses to the fact that you were a sickly child.

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What were the original test?

Was it antigliadin IgA, or tissue transglutaminase IgA, or endomysium antibldoy test?

If you are on a gluten free diet, the blood tests will be negative, no mater if they are old or new.

What new test are you talking about, is it the new deaminated gliadin test; and I cannot imagine any celiac test costing 900 dollars, they cost about 30 dollars here in Europe for the gene tests and a few dollars for the ttg tests, antigliadin and deaminated gliadin tests.

Anyway, the new deaminated gliadin test will be negative if you are on a gluten free diet.

For the blood tests to be positive, one has to eat at least 0,3 grams gluten per kg body weight every day for at least six weeks, better three months. And the lasst recommendation I read was 0,5 grams. That would be half a loaf of bread here for me every day, not just a couple of slices like many say, Those are only for children, not any adults unless they are seriously underweight....

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I already have disability from Social Security. My youngest son has disability for Social Security purposes. Yes, you are born this Celiac Disease just as you are born with Hyperinsulinism Hypoglycemia as well. Both diseases are inherited from your parents. Well, the Center For Diesease Control says so any ways. First off, the Veterans Administration is emplying that my sons are not my sons. (Biologically) I was there, the day each one was born, I was there the day my ex-wives got pregnant. The boys look just like family member of my brothers and sisters. I spent 10 years in the US Army Signal Corps at basis all over the world. 1972 - 1982. During that time period the medical persnonnel did not know or said they did not know of these two diseases. I informed the miltary upon entering the US Army about, my condition. I was thin, no muscle tone, and under weight when they drafted me for Vietnam War.

Many years after the servie the VA found the name of my diseases. Celiac and Hypoglycemia Diseases. The Social Security gave me total disability way back in the mid 1980's but, the Veterans Administration gave nothing. I never worked any where as a civilian worker. My whole work career in electronics and telecommunications was done in the US Army. Yet, the Social Security looked at my test results and medical records and gave me total disability right away and, I have had disability since that time to present time.

The US Government workers at the VA in Washington DC told me, the military should not have allowed you into the US Army in the first place. They (US Army) did allow you in so, they are responsible for my medical conditions. In other words, they owe me compensation for my conditions. That is what I have been fighting for my whole life. To get what is rightfully mine. Nothing more, nothing lest.

The DNA test is done to establish that I am the biological father of all three son. Since, they each have the disease, their mothers do not, I am common to the three sons. Along with their diagnoses, my older test, and the DNA Test proving without a shadow of doubt that I have the disease of Celiac. The chances of marrying three different women with each one having Celiac Disease is next to impossible.

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Whoa! I think you are a little confused.

There is a DNA test that shows who the dad is. It has nothing to do with Celiac. There is a different genetic test to show if you have the genes that can cause Celiac. Everybody is born with thier genes, true. Read around on here. Just because you have a gene for Celiac, doesn't mean you will get it. I saw something that said like 30% of the people have the gene but only about 1% have Celiac.

I don't think the military owes you for being sick from something they didn't cause. I think the mom owes you child support.

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According to the VA Regulations and, according to the military lawyers, they are responsible. Neither one of us knew the name or the diseases, I was born with at the time, I was drafted. The US Army, were informed and took note of my medical condition. Everyone is examined over and over in the US Army upon enlisting and during basic training. They probe you and prod you and give you untane million shots. They went right ahead and, let me in and serve for 10 years. If I would have known the name of the diseases and with held the information from them, yes they would put me in jail. They themselves did not know of these diseases. When, I went to the clinic for sick call, they would scratch their heads and, say they did not know what kind of sickness I had. Some doctors looked up my conditions up in their doctor's medical handbooks and did not come up with a thing. During my service days on active duty my disabilities became worse and, I had to leave my career. I wanted to stay for 20 years and retire. But, after 10 years, I was just too sick to continue in the military. My oldest son spent his time with me during my military service and, he has been with me ever since. He wittness the US Government give me every medication possible after military service. Heart med, asthma meds, kidney meds, meds for bad back, meds for my eyes, ears, etc..

every kind of meds accept, treatment for Celiac Disease or Hypoglycemia. Then, when, I was 50 years old all of a sudden, they know about what has been bothering me all these years and it was none of the above diseases. It was just plain Celiac and Hypoglycemia. The damage to my inside guts and organs have been damaged beyond repair now. So, the government workers in Washington DC say they owe me compensation pay. If they did not want to pay they, should not have let me into uniform in the first place nor, drafted me into the US Army.

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For starters, thank you for your service. I have a lot of respect for soldiers.

You do need to understand that you are hitting a bit of a nerve here. Most of the adults on this board lived with undiagnosed celiac for most of our lives (me included) and we are not looking for disability. I don't know all of your health situation, but most folks recover from celiac well enough to work with a correct diet, even if they've had it for decades. You are not necessarily "damaged beyond repair" as lots of folks here can tell you. You're only 50, and you still have plenty of capacity to recover.

Agreed that ideally they would have figured it out back when you were drafted, but it's hard to argue that your military service had any particular effect on the severity of the celiac. You wouldn't have been diagnosed in a civilian job either, as many of us can attest. We've all gone to doctor after doctor and had the frustrating experience of head-scratching and negative blood tests. Like you, we had to figure it out ourselves. As I said above, I don't know the rest of your health details -- I understand a lot of Vietnam vets have chronic illnesses from agent orange and chemical warfare -- but you CAN recover from celiac.

It can take up to five years for the gut lining to completely heal if the damage was severe. As others mentioned, about 50% of celiacs are also sensitive to dairy so the skim milk may be causing you trouble and keeping you from healing. So can gluten hidden in supplements, cross-contamination from eating out, or gluten on cutting boards and utensils in a shared kitchen. It would be good to switch to a gluten-free calcium supplement and find something else to drink with your meals if you're still having a lot of GI trouble. You may also have B12, D, and calcium deficiencies that are keeping you sick.

On the diet you posted above, you will NOT show antibodies on the new tests. Even if you're getting traces of gluten, it takes 3-4 slices of bread a day to have celiac bad enough to show on the tests. We are all still waiting for an accurate test that works for folks on the gluten-free diet but right now there is no way to diagnose someone who has been mostly if not 100% gluten-free as you have for years.

I wish you the best of luck, that you either recover or if your health problems are that persistent, that you get the disability you are seeking.

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I know about someone who went to Dr. Greene and he took a biopsy sample and put it in a test tube with gluten to see if it made antibodies, and this would be a sure way for diagnosis while on a gluten free diet, but I have not heard of others getting tested like that elsewhere.

Another thought, I have read some news flashes here on celiac.com or somewhere else about that the military keeps blood tests of all personnell frozen for ages, and researchers did a retrospect study where they took old blood samples and tested them with the ttg test, and looked at how those who were positive, fared.

But I would doubt they would give you your old blood tests for testing...

Having HLA DQ2 or HLA DQ8 would not prove much, and this is the gene test available for celiac. One has two HLA DQ genes, and you get one from the mother and one from the father. If you have two copies of DQ2, for example, then your sons would have one copy, unless the mother also passes on one DQ2 gene. (DQ2 is very common so it does not prove anything)

What test are you looking for?

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Like I mentioned before. I am getting the message that, the Veterans Administration is saying that my sons are not my sons but, rather adopted or something. That way, they could say that my children can have Celiac Disease without me having it since, I am not biologically associated with them. So, I must now pay a big price to have a DNA test done on them, in order to prove they are my boilogical sons. The newer test would have been like frosting on the cake. But, if I prove through blood test they are mine biological children and, together with their positive test results, they VA cannot say my children belong to someone else. The Celiac Disease they have can only come from me and me alone since their mothers do not have it. It is a round about way but, it will prove my point. The VA has been fighting me tooth and nail since, I have gotten out of the service. I have not worked since getting out of service back in 1982. The Social Security has already accepted the Celiac Disease Results and the Hypoglycemia test results. It is the VA that does not want to accept my tests results. I was given total disability by the Social Security way back in 1985. Still have it. I am a veteran and entitled to benefits.

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Like I mentioned before. I am getting the message that, the Veterans Administration is saying that my sons are not my sons but, rather adopted or something. That way, they could say that my children can have Celiac Disease without me having it since, I am not biologically associated with them. So, I must now pay a big price to have a DNA test done on them, in order to prove they are my boilogical sons. The newer test would have been like frosting on the cake. But, if I prove through blood test they are mine biological children and, together with their positive test results, they VA cannot say my children belong to someone else. The Celiac Disease they have can only come from me and me alone since their mothers do not have it. It is a round about way but, it will prove my point. The VA has been fighting me tooth and nail since, I have gotten out of the service. I have not worked since getting out of service back in 1982. The Social Security has already accepted the Celiac Disease Results and the Hypoglycemia test results. It is the VA that does not want to accept my tests results. I was given total disability by the Social Security way back in 1985. Still have it. I am a veteran and entitled to benefits.

By the way in case anyone here is curious, I drew and painted the picture, I use for my Avatar. Watercolors.....

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Like I mentioned before. I am getting the message that, the Veterans Administration is saying that my sons are not my sons but, rather adopted or something. That way, they could say that my children can have Celiac Disease without me having it since, I am not biologically associated with them. So, I must now pay a big price to have a DNA test done on them, in order to prove they are my boilogical sons. The newer test would have been like frosting on the cake. But, if I prove through blood test they are mine biological children and, together with their positive test results, they VA cannot say my children belong to someone else. The Celiac Disease they have can only come from me and me alone since their mothers do not have it. It is a round about way but, it will prove my point. The VA has been fighting me tooth and nail since, I have gotten out of the service. I have not worked since getting out of service back in 1982. The Social Security has already accepted the Celiac Disease Results and the Hypoglycemia test results. It is the VA that does not want to accept my tests results. I was given total disability by the Social Security way back in 1985. Still have it. I am a veteran and entitled to benefits.

I understand your situation now. That must be extremely frustrating to have social security say one thing and the VA another. I wish there were a solid test for celiac that doesn't require eating gluten! Even the newer DGP test isn't that good, though it catches more celiacs than the older ones.

By the way, I noticed your avatar before you said you painted it. It's lovely. Is the little picture on your profile another of your watercolors? I wish we could see them bigger.

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Like I mentioned before. I am getting the message that, the Veterans Administration is saying that my sons are not my sons but, rather adopted or something. That way, they could say that my children can have Celiac Disease without me having it since, I am not biologically associated with them. So, I must now pay a big price to have a DNA test done on them, in order to prove they are my boilogical sons. The newer test would have been like frosting on the cake. But, if I prove through blood test they are mine biological children and, together with their positive test results, they VA cannot say my children belong to someone else. The Celiac Disease they have can only come from me and me alone since their mothers do not have it. It is a round about way but, it will prove my point. The VA has been fighting me tooth and nail since, I have gotten out of the service. I have not worked since getting out of service back in 1982. The Social Security has already accepted the Celiac Disease Results and the Hypoglycemia test results. It is the VA that does not want to accept my tests results. I was given total disability by the Social Security way back in 1985. Still have it. I am a veteran and entitled to benefits.

You are only entitled to disability from your service if you had a service associated disability. My DS, for example, was an undiagnosed celiac when he was in the Army and recieved a medical discharge. He was told he could get 10% disability because jumping out of planes blew out his knees but he never applied because there were other things he could do that didn't involve jumping out of planes and even though many of his issues were caused by celiac that was not something that the military service caused. Celiac is not a service associated disability, your being in the service did not cause your celiac. It is not unusual for us to go years without being diagnosed and to take years to heal. I was diagnosed in 2002 and just went back to work this week. I did not qualify for SSI even with a large number of issues that came from undiagnosed celiac and non-celiac related PTSD. I wasn't able to work for over 10 years and got no help at all. You are fortunate that you were able to get SSI and I hope you eventually recover enough to go back to work. I think it is highly unlikely that you will get any service related compensation.

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Like I mentioned before. I am getting the message that, the Veterans Administration is saying that my sons are not my sons but, rather adopted or something. That way, they could say that my children can have Celiac Disease without me having it since, I am not biologically associated with them.

Even biological children can have celiac disease without either parent having it. Your argument is without merit. A DNA test for the genes associated with celiac disease will prove nothing since they are very common alleles.

It sounds as if you are planning on spending money needlessly.

Since you are getting SSI, why bother with the VA? I did some googling and found one person that was given 30% for celiac disease disability, and another 50%. It seems unlikely that you'd get all, and you'll be spending all the money you currently receive to do it.

Don't you think it would be more beneficial to focus on getting well, instead of focusing on what you think you deserve?

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I understand your situation now. That must be extremely frustrating to have social security say one thing and the VA another. I wish there were a solid test for celiac that doesn't require eating gluten! Even the newer DGP test isn't that good, though it catches more celiacs than the older ones.

By the way, I noticed your avatar before you said you painted it. It's lovely. Is the little picture on your profile another of your watercolors? I wish we could see them bigger.

Yes, all my avatars are drawn and painted by me. I used to take the time during the winter months and draw. Then, I used my watercolor paints. I paint them the way my mind thinks they should be colored. I stopped for a while since allot of people did not like my paintings. They said, they looked childish and so, I quit for now.

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Yes, all my avatars are drawn and painted by me. I used to take the time during the winter months and draw. Then, I used my watercolor paints. I paint them the way my mind thinks they should be colored. I stopped for a while since allot of people did not like my paintings. They said, they looked childish and so, I quit for now.

Your little painting on your profile reminds me of Gauguin and I like the composition. I imagine Gauguin caught some criticism for unrealistic colors too. :P

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I paint them the way my mind thinks they should be colored. I stopped for a while since allot of people did not like my paintings. They said, they looked childish and so, I quit for now.

If you enjoy doing them and like what you do don't let other people stop you. It doesn't matter what they think what matters is if you enjoy painting them.

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Karl,

I think you are misunderstanding the genetic factors in celiac disease. Just having the genes does not mean you have the disease. About 30% of the US population have the genes that are associated with celiac disease, but only about 1% actually have celiac disease. There are cases of identical twins where only one twin has celiac disease. In addition to having the genes, something must happen to trigger the disease. It is quite possible for a child to have celiac disease even though neither parent has the disease. There are numerous examples of that to be found on this board.

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Sounds like someone in that office said those are not his children, but then they should prove those are not his children, just an idea? But that would be just an ordinary paternity test needed.

by the way, nice paintings.

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I would agree. If the VA says these are not your children, they should pay for the cost of proving they are not your children. However, if you cannot get them to do that, then you can do it yourself through this company: http://www.gtldna.com/

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