Karl Otto

Are there any Celiac Support Groups in he Denver CO Area ?

I have almost forgot for, the last 5 years, I have not been able to tolerate fats. When ever, I try to boil chicken meat, breast, thighs, or drump sticks. The fat boil out of the meat but, I get really nausea if, I eat the meat. I found that whether the meat is pork, chicken, or beef. It oils or fats come out of it or, it is greasey, these fats and oils make me really sick.

Also, if any spices are used in preparing my food other than Iodine Salt, I also get really sick within minutes. My stomach becomes upset and burns. If I eat only bland foods, I have absolutely no problems at all. If I stay away from all oils and fats I am just fine. The only oil, my body wants or tolerates is Olive Oil only !

Any ideals what causes this?

I think all people here misunderstood me. I have three sons with three different women but, I got the chidren and custody of the children in court. I am the only parent whom has raised my sons. The three mothers did not raise our sons, I did. It is not often that the father gets custody of the children but, I did get custody. The mother of Ishmael does not keep Ishmael in her home or take him on weekends to her home, either. Ishmael stays all the time in my home. She is suppose to visit on weekends if she wants to. She has three other children by her new husband. She feels, she must concentrate on the raising of her three new children. Ishmael has been placed in my home, the ex-husband, me. That is why none of the mothers have had any dealing with my sons because, they got on with their new lives and new husbands. They got new families and, they come from a country that does not believe in disabled children nor, do they tolerate disabled children. Ishmael half brothers and sisters are in excellent health and, only Ishmael is disabled. Ishmael's disabilities come from me not his mother whom is excellent health as well.

I use to take probiotic in pill form. I took them for 1 whole years. After, the first 12 months, the probiotics started leaving me dehydrated. The dehydration make me very sick. However, when I stopped taking them, I never got dehydrated again. Go figure ! I thought that my constipation would return because, I stopped taking my probiotics but, low and behold, it did not. I have had no more problems with constipation anymore.

I agree with you. We shouldn't be looking back to the past. But, in my case the past is repeating itself. There it is relavent to this situation. I also agree that the Celiac Disease part of my life has done and is doing better. However, the Hyperinsulinism Hypglycenia is not doing well. The second disease can kill me before, I reach the age of 60 years old. Notice the list on my signature ?

I am currently bed ridden somewhat, I sleep in bed for 12 -14 hours a day, each day. I have a regula hospital bed in my house. A while back, I had a regular bed, with a regular box springs and mattress. My back side or rear end if you want to put it that way, gave me problems. I would wake up each morning, with red spots overtop my shoulder blades and on the back of both hip bones. (Bed Sores starting to form). My relatives chipped in and each one bought me something different. They helped me buy the hospital bed frame, mattress, and overlay. The same set up they have in the hospitals. I sleep better at night and the bed sores situation has not formed, thank God. The muscles, fats, and weight on me is so low that, my bones stick through my sick and it hurst my backside to sit up in a regular bed or chair. I live in Denver CO.

I went through a endoscope up my backside as well in the past. First off, they did not give me any sedatives and, the procedure was very painful to me. It hurt something terrible especially when they in-flated my guts to be able to see better. Before the test, they made me wait for 7 - 8 hours without food or water. I was having low blood sugar symptoms that, made me feel like I was dieing. I was dizzy, weak, shaky all over, I could hartly breath, and couldn't even remember my own name. That is how low my blood sugar was back then. The VA Hospital in Denver knew about my low blood sugar problem long time before I was diagnosed with Celiac Disease, too. In my opinion, the bowel problems are due to eating foods with gluten in them. Remember, the longer you eat foods with gluten in them, the more damage you do to your guts.

Has any of the older members compared their younger photos of themselves with their current photo? The reason, I bring this up is to compare your original self with your current self.

Yesterday, with the help of my digital files, I collected my older photos in time sequences. When, I was 17, 18, 19, 20, 21, 22, etc... I have noticed how thin, I was back in those days. In some of the years, I was shocked at what I looked like back then. When, I was 22 years old, I was in the US Army on active duty. I was doing exercise each day and doing some weight lifting. I was eating right according to the US Army. I felt sick after every meal back then but, I got tired of the military clinical doctors telling me, I was ok. I was very thin, small chest, no muscle tone on my body, and very under weight all the time. 5 feet, 11 inches tall but, only weighed 125 lbs soaken wet. Now, here I am, 57 years old with a waist size of 31 - 32 and only weighing in at 124 lbs again. I am the same condition as I was back then, again. My picture at the age of 27 and 28 year old showed that my hair was almoste completely grey by the age of 28. To me the signs and symptoms have always been there but, again, no doctor had ever thought to give me a blood tests to find out what was going on over all these years. Doctors gave me, anxiety med, seizure med, heart meds, Kidney med, vitamins, but, none every though of give me a battery of blood tests. I just do not understand it ! Then, the doctors at the emergency room on my 50th birthday decided to give me a battery of blood tests. To determine, I had Celiac Disease and Hyperinsulinism Hypoglycemia. I do not know if I am going to be 60 year old or not. Too much damage has been done by this time in my life. I appriciated the diagnoses of Celiac Disease and Hyperinsulinism Hypoglycemia but, why does it take so long to find this out? I would never have passed this along to my children had I know this information at the age of 18. I would never have thought about having any children at all. I would not have wanted to pass these diseases on to innocent little children.

My ex-wives know all about the Celiac Disease. I shared the information with them. They all slammed the phone down in my face and, they told me not to say that again. They have all three disagreed with every medical test given to my three sons. Each one of the mother's blame me for their son's disorders and diseases. When, my sons were just babies, their mother up and left me alone. They each ran off with another man whom they married had other children and rode off into the sunset. Each one become rich, compared to me. They each knew, I was sick from the military service. What they did not know was that I was sick prior to military service. I knew,I was sick back then but, no one had a name for my sickness. I told them the results of the Celiac Disease test. Each one tells me, they are healthy and their current children are healthy as well. Then, the ex-wives accused me of making thiers sons sick in the first place. Then, when I told them their sons have Celiac Disease, they became very angry at me and slammed the phone down in my ears. Later, each one of them called, me back and told me to never tell them anything negative in regards to their sons health. They love to argue with me over that point. First, you tell me my son has Autism, then you tell me, he has mild retardation now, you tell me he has Celiac Disease. Close you mouth Karl. I do not believe this docotr or his tests. They are all three in denile. Then, they start comparing their current children with Ishmael and, they ask how come the current children are healthy and, Ishmael is sick. Each one of those women believe Ishmael and my other son will become healthy and strong further down the road of life, if they get away from me. Me, I am just trying to get along on my own, and take care of me and my sons, the best I can.

The mothers of my sons do not come around to see them but, very rarely if ever. I have been with my children ever since they were born. I diapered them, clean their clothes, and feed them food, that I cooked. I played the rolls of mother and father the best, I could.

The last couple of days, and also yesterday. My youngest son's doctor and his clinic director,have called to appoligize to me. They told me how sorry they were for not giving my youngest son his Celiac Test sooner. My youngest son, Ishmael had been a patient at this medical clinic since his second birthday and, he was seeing the very same doctor all them years. Seven years ago, I was given a diagnoses of celiac Disease at the hospital down the street from his clinic. I asked my son's doctor to give him a test for the very same disease. The Dr. Ginsberg refused to give him a test sighting that it was impossible for my youngest son to have the disease, just because, I had the disease. (He is a very old doctor) He did not believe there was such a disease, he often told me. Last month, he got a very young asistant doctor to work with him. The younger doctor took one look at my son's medical records and, he ordered a Celiac Disease Panel Test. The test came back really positive, 100% positive, the numbers came back really high. The younger doctor said there was no more test needed to prove he had Celiac Disease. Then, yesterday, the older doctor secretary and director of the clinic called to apoligized for not checking my younger son earlier. Why, would they do that at this time? Are they afraid of being suited?

At the same time, they did not ask how, I was doing since, I am the one that gave it to my children. I was married three times, with one son from each wife. Since, the three of them have it, it had to have come from me. I was the one factor in comon for all three sons. They all ask me how the ex-wives were doing and getting along with their Celiac Disease. The doctors and director never ask about me and/or how I was getting along with my Celiac Disease. My youngest son's social worker called and, she ask how my son's were doing so far. She never ask me, how I was doing and coping with the disease. It seems, either they do not believe, I have it or that my ex-wives gave my sons this condition to my sons. Why? They had all kinds of advice for them food, medical, and social wise but, no advice for me. Even the social worker, did not ask about me and, how I was dealing with disease. Very strange !

It seems that everyone that called me was by-passing me. My three ex-wives were all black women. They were test with negative results. Very very low numbers on their tests, There number were so low, it was hard to know is they were even tested. So, why do doctors automatically assume it is the mother whom gives this Celiac Disease to their children?

He is now at home but, because he is autistic in addition to the celiac disease, the doctors did very little for him. The emergency room doctor said, he was very familar with Celiac Disease as is most younger doctors. The older doctors still refuse to accept, there really is a disease called Celiac. Well, that is what he told me over the phone yesterday. He refered my son the GI and Endocrinology Department at Children's. Unfortunately, for my some, the next schedule for him want be until the end of July, 2011. The said, too many kids in this area of Colorado are being diagnosed with Celiac Disease and, they are scheduled ahead of my son whom, must wait his turn in line. He ate some jello and gluten-free pudding last night. His stool come out a little bit more than the previous day but, not a normal amount as to be expected. I found a way to make one of his favorite foods this morning through research. There is a way to make him his Chili-Mac. Annie's Creamy Deluxe Cheese and Mac dinner mixed with Bush's Gluten-free chili beans and sauce. Yes, they do make a gluten-free chili in a can. I researched it this morning it is true, from several sources.

My younest son Ishmael use to like to eat chili-Mac before he was diagnosed with Celiac Disease. Now, he doctor put him on a gluten-free diet. He has been so lost without his favorite food. So, I found out this morning that Bush's Beans makes a gluten-free chili. I checked with several sources and included the Bush's Beans Company as well. So, if you mix Annie's Creamy Deluxe Box of gluten-free cheese and macaroni and Bush's Gluten-free beasns together, you get gluten-free Chili-Mac just like he use to eat. When, I first researched it, everyone told me there is not such thing as gluten-free Chili-Mac sold on the market today. Well, it seems to be doing the trick. You can find just about anykind of food if you look hard enough. Key is to experiment with different food groups and come up with new or old dishes accept, in gluten-free form.

Tonight, he finally ate a little bit of plain jello and, a couple bits of gluten-free putting. He is still not out of the woods yet, I am trying stay off the dehydration. If I can keep him from that sickness and, get him to eat more, he just might make it.

Unfortunate, for me, I am now loosing my eyesight tonight. I am typing this post with just one eye, the other one is not working too well. I laid down tonight, and slept overtime when, I should have been eating. (Hypo thing going on with me).

My oldest son went out and looked harder for more foods containing no gluten, I am going try on Ishmael. Like, I said, I am not giving up or giving into defeat. US Military veterans can be hard but, we never give up and never surrender.

There are allot of foods out there that he use to eat. He use to like his Chili-Mac frozen in a tray. He had to give it up and again, he also goes by the box, smell, taste, and feel of the food given him. The chili-mac he use to eat was loaded with bad ingredients, wheat, chemicals, preservitives, etc... He liked his cheese and macaroni with little veinana sausages on top. Then, he liked his hot pocket sausage pizza's frozen. Again, recognized the packages. He would follow me around in the kitchen making sure the right box was placed into the microwave oven. He watched me ever step of the way, too. So, when it come time to change over to gluten-free, he went nuts and laid on the floor and screamed. He was just not going to accept anything new or any thing different in his meals. He like whole made yellow cakes, made from scatch. Again, he would watch me make it, if he did not see it made, he would just not eat or touch it in any way. He is just no accepting anythng that is made from scatch at this time. He liked fig-newton cookies, I still let him have some of those straight from the box otherwise, he would not eat them. (Must see them with his own eyes) He liked bananas and, I still give him then each morning. (One per day only) He used to eat his food with extra virgin olive oil poured over top. ( Table spoon full)

The bad part of his old diet, his stomach would stick way out from his body and, he looked bloated all the time. He could not sleep well at night and ran around in the dark or with the light on. He was always running around looking something to eat all the time, he was a pigging out on everything. The doctor diagnosed his with over eating. He was having all sorts of bad times going to the bathroom. Too many bounts of constipation while eating wheat gluten products. He was always feeling bad after eating eat of his meals. His nausea and other feeling would start about 20 minutes after eat meal. Now, he is loosing weight very fast. Maybe because, he is refusing to eat. Tonight, he is still having problems going to the bathroom.

Last night, my son Ishmael was taken to the emergency room at the local hospital. He was complaining for two days about his stomach. He was also not having normal bowel movements as well. The doctor upon reviewing the lab test results, said his condition was related to his celiac disease. The doctor thinks the disease has damaged his large Colon and small intestines in some way or fashion. So, the doctor put in an order to have him tested in endocrinology and GI department at the local children's hospital. There might be a tumor, cancer, or growth of some kind obstructing his bowels. He was not able to have a normal bowel movement before finding out he was Celiac now, he still has the same problem. As a result the doctors wants further tests done right away. That is where, I stand at this positing. P.S. years of non-treatments of this disease has taken its toll on my son.

Karl,

This is not an Autism site. A few may have Autistic kids. I suggested the Autism site because they deal with kids with Autism everyday.

Honestly, if this is truly your life, you need to get help, right away. A Celiac Forum is not the professional Autism assistance you really need. Your refusing to get the help or ask for the help your child needs is bordering on child abuse/ neglect.

We can try to help you with things related to Celiac and gluten intolerance. His

Autism caused eating problems are not something we all know about.

Sorry if this sounds harsh, but there is a helpless kid involved.

Yes, it is not a website for Autism but, my son has both Celiac Disease and he has Autism at the same time. He deserves to be here the same as everyone else. Just because, he has additional medical issues does not me he does not have Celiac Disease.

Have any of you ever seen the film or movie, called 'Rain Man, by Dustan Hoffman?

On that film, he made it after months of studing Autistic Children and adults with Autism.

well, in the movie he wore only Fruit-of-deloom underwear. He also watched his favorite television program every day at the same time. His brother took him on a long road trip. When he could not get clean umderwear or see his favorite tv program, he went completely nuts and scream loudly and jumped up and down on the floor. He was a grown man but, he still acted that way, anyways.

Once, Autistic children fixate on a certain, program, clothing, or food, hell or high water will not change their minds or attitude. He is acting this way toward me at present time. He has fixated himself on certain foods in my house and will not deviate from that course. Those with Autistic Children, how did you get them to change their minds? What methods has worked for you? Pulling this Rain Man trick could casue him to harm himself or others around him. Should I have to go back to all those foods he use to eat, jus because he cannot accept anything new? If he himself does not choose the new food, he will not touch it absolutely.

All of your suggestions are good advise if, you were dealing with a normal Celiac child. Eggs, sausages, and gluten free breads would be nice, for breakfast. Oatmeal, fruits, and veggies would be nice as well. Thank you for your suggestion but, my son is not your tippical child.

Before, he was diagnosed, he had a problem with sugar from any source in his diet. It made him go into hyper-active mode. So, I had to cut back on sugar in his diet. He loved to eat pizza, burritos, and hot pockets. These contained wheat flour with other things, not on the Celiac diet list. He would have trouble going to the bathroon, on a daily basis. I had to slip suppositories up his behind ever three or four days. It was the gluten he was consuming on a daily basis that did this. He never would eat eggs, scrambled, boild, or fried ever. He would not drink milk once he was off the bottle. His teeth practically all came out in his very young years. He got no more than 10 teeth in his whole head. Myself and he have no jaw teeth what-so-ever in our head. We must either eat soft foods or grind up our foods in a blender.

We tried, Nestly's Quick strawberry drinks with milk and, it did not work. We did the fruit smooth thing as well and, that was a waste of time and money on him. Like, I said, I refuse to go back and feed him his favorite gluten laiden foods again.

If some had to quit smoking, they would not go back to smoking a cigarett every other day. That would be defeating the whole purpose of quiting. There was a time when, I use to eat eggs and have toast for breakfast until, they started making me really sick. Even as a child these things made me sick for 2 -3 years at a time, never did figure out why back then.

My youngest son just flat out refuses to eat anythng that is gluten-free. For two days now, he is refused to eat anything put in front of him. It does not matter how you cook the food or, how fancy you make it look in the plate or bowl. His weight is going down each day. He puts me in mind of a cigarette smoker; I got to have my cigarettes and nicotine or, I will surely die. So, I have decided to continue on as the doctor has suggested and, one of us is going to die. I will not give in to his wishes and, go back to the old way of eating food. Either he dies of starvation or, I die of aggrivation either way, one of us is going to die. I took down his list of favorite foods and bought the gluten-free version of the very same foods. He picks up the plate, smells it, and, picks up the food between two fingers and tests it. Then, he shoves it aside or out of his sight. He is complaining about his stomach being enpty but, still refuses to eat anything. He wasting ton of food that frankly cost 2 - 3 more times than ordinary food. How is he able to test this food, is pure smart mouth, I just do not understand his method. Well, I too am stuborn so, one of us is surely going to die for, I refuse to give up trying.

Who else is going through this pig-headed situation?

Remember he has full blown Autism, Mild Retardation, and Celiac Disease since birth and, he is newly diagnosed.

I have Celiac Disease, Hyperinsulinism, and Neuropath thing going on in addition to seizure ever once in a while.

Are there any people with Celiac Disease in the Denver CO Area of this state. I would like to meet some of you through e-mail.

My family suffers from more than one form of Celiac Disease, diabetes, and, Hyperinsulinism.

I will be changing my Avatar Pic from time to time. I did not like the look of those pre-printed ones. So, I plan in using my own watercolor paintings instead. I am Karl Otto and I have Celiac Disease with Hyperinsulinism Hypoglycemia.

I have three sons. A 37 year old, a 33 year old, and, a 15 year old son with Autism, Mild Retardation, and, Celiac Disease. We all inherited our disease directly from my mother whom is dead at this time. I have been married three times and, currently divorced. I live in the house of my oldest son with my youngest son. I have no pets or other animals. My hobbies are drawing, watercolor paintings, and movie dvd collecting. 57 years old and not looking for anymore relationships. Call me brother monk from now on. I would rather do without women than go through the line of bull, I have went through in the past times.

My son's mother whom is now divorced from me, has three new children by her current husband. They are very young children and, she must devoted time to her current children and husband. So, Ishmael is left in my custody. I became so sick with Celiac Disease and my Hyperinsulinism Hypoglycemia that I am truly housebound, and cannot leave the house and venture out only 2 hours a day. Like the last poster stated, I could not leave the house for many, many years. I was sick as a dog as long as I can remember, lay on the floor in front of the television set. By concentrating on the television program gave me temporary relief from the nawly, aganizing pain, I felt in my stomach all the time. I do not know how to live it down for, all them years of sickness and my life was riuned just becuase a bunch of doctors could not accept the truth and, they did not want to give me a disability check. Well, the Social Scurity Disability Personnel recognized I was sick and, I got a check after leaving military service. It took 8 years after the military service to get that check.

My oldest also has Autism just like my youngest son accept, he is high functioning. He has worked as a janitor for 20 years now. He helps me out financially whenever he can. So, does my first ex-wife helps me out with diabetic supplies but, I must pay her back if I win my lawsuits again the US Government. My oldest son has volunteered to stay behind and help out his poor father, me. He does the shoping for food and clothing for me and my youngest son, in addition to his regular work.

Yes, the picture on the Avatar is one of my drawings and watercolor paintings. I have better ones that that one. That is one of my leased better ones.

My hobby is watercolor paintings and other artistic activities. Allot my paintings are 16 x 20 in size. At one point last winter, I got so thin and skinny that I had to use a wheele chair to get around. Today, I weighed myself, this morning, I came in at 130 pounds. Up from 119 before.

I do not know how old you are but, I am 57 year old man. I did not find out what my diseases were up until 7 years ago. My ex-wives knew, I was very sick but, could not find the name of it. I have statement from my oldest sister whom would testify that I had symptoms of Hyperinsulinism Hypoglycemia was back when, I was just one year old. My youngest son had symptoms when he was born. I ask the doctors about it. Thy would not do blood tests or any other tests. I ask during the US Military years but, again, the military doctor would not help. My oldest son, had symptoms as well as a child. Again, no help there for him as well.

I have been, through childhood, young man years, middle aged years without treatment for Hypoglycemia or Celiac Disease. So,you honestly think there was no damage to my body after 50 year of non-treatment? Do you honestly believe that? To me these disease are very serious, diseases. It took years to make me so sick, it will now take many, many years down the road to make me well, if that could be done. Right now, I am 57 years old, 5 feet, 11 inches tall but, my body weight still remains under-weight at 122 - 125 pounds. I have no muscle tone or muscles on my body. During the last 50 years my body has went from very under-weight to very over weight with ton of fat but, no muscles. Remember, my mother suffered from Celiac Disease as I have. She even aged so quickly she looked like 80 year old when she was only 55 year old. Now, I have given this disease to my children for, no good reason other than I listened to loud mouth US Government doctors way back then.

Now, they (US Government) refuse to help me out after, they found out the true name of my two diseases. I would not have had any children had, I been told back in the beggining of my life. I got all kinds of threatening letters from Government Doctors and threats from the VA when, I had the test done for my two diseases. I am not kidding, they were very angry with me. Even now, they will not let me have my tests strips through Social Security Medicare System. I have to pay for all my diabetic supplies out of my pockets. Relatives are helping out the best they can but, they cannot do it forever.

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Let me describe him the best way, I can at this time. It is around 1.30 am in the morning. He has Autism, mild retardation, very little teeth still left in his head no jaw teeth. Just like me just a few teeth left in front of mouth, uper and lower teeth. Our family, have teeth that die from the inside out. That means our pulp inside the tooth dies off first. Then, the rest of the tooth crumbles around it, into piece. For these reasons, he practically has no teeth left over in his mouth. So, we must grind up his food as I personally have to do myself. I too do not have any teath left due to the Hyperinsulinism Hypoglycemia. Now, we must contend with Celiac Disease on top of everything else in the world around us. My teeth and his teeth were brushed and flowsed every day or, over every other day. Still our teeth died all the same. That is why, I have to grind his food and mine every meal when-ever possible. The dentist says our teeth died because, of the lack of glucose control most of the time. My mother and his mother took all kinds of maltible vitamins before both of us were born and tried to eat right as well. Still, me, him, and his oldest brother ended up with very few teeth in our mouths. Ishmael has complimented this disability by, smelling, tasting, and feeling his food prior to eating it. Do not sell him short, he can taste the difference between gluten free food and non-gluten free foods. He is disabled not stupid. Then, just yesterday, I caught my oldest son sneaking behind my back and trying to eat regular wheat bread in the kitchen late at night. He told me, he could not live gluten free for the rest of his life, either. He went on to say, his body is still craving regular, normal foods with gluten in it. This gluten free foods, he said are starting to get old with him. He is thinking of going back to normal foods again. He claims his body craves it and, he cannot help it. To me, my youngest son and oldest son are not taking this disease seriously, enough. They are acting like it is a comon cold, take a little medicine and it is gone in the morning time.

I tried putting small amounts of veggies in his food without him looking. That however did not work out. He just simply picked up the bowl, smelled it, tasted it, and put it between is fingers and tested it that way. Then, he shoved the bowl away from his face and, he refused to eat it. Now, he is refusing to eat anything that is deamed gluten-free. Even though, it is his favorite food, elbow macaronic and cheese. He has gone a hunger strike since starting this gluten free diet thing. The problem with his old diet of macraroni and cheese was it made his stomach puff out and hard for him to go to the bathroom. His first 2 - 3 days of eating his gluten-free diet went well, but, after 3 days of gluten free, he is now refusing to eat anymore. Remember, he is mute, autistic, and mildly retarded individual. It is his way of telling me, he is sick and tired of this gluten free food bull. This is his attitude not mine. I as a parent would feed him what ever the doctor calls for regardless of what he says. I want what is best for him and his medical conditions.