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Karl Otto

Help! Two Son Whom Do Not Care

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In the past I was originally diagnosed with Type 1 diabetes and hypoglycemia. Since, then the doctors and lab test have revieled Celiac Disease with Hyperinsulinism, instead. My three sons were tested and found to have Celiac Disease through lab blood test. The doctor said these days they look for genetic markers in the blood and among other things and can be very acreate in their findings.

I am attempting to cope with the disease as is my oldest son Eric. We eat what the diatition perscribes for us. The other two sons want obey nothing of the kind. They are trying to kill themselves by not eating nothing or the totally wrong foods. My 33 year old son says he would rather die than eat gluten free food the rest of his life. So, he is on a hunger strike and is going back to regular food and says he does not care if it kills him or not.

My youngest son, has full blown Autism and Celiac Disease and he is now refusing to eat gluten-free food as well ans his older brother. I personally do not like hanging around people whom have death wises. For years I went through hell with my diseases before their discovery in my body. These days, I feel better than in the past. Because, in the past, the doctor did not have blood test to prove Celiac Disease, my body has been damaged. I now, lay in my hospital bed at home and, try taking care of my disease the best, I can. How can, I convince my 33 year old son and my 15 year old son to eat right and take care of themselves? Not taking care of the Celiac Diseas can lead to a whole host of nasty disease and conditions that lead to death.

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I don't think there is a lot you can do about a grown man who supports him self. The 15 year old is another story. Who does he live with? If he lives with you, don't buy anything but gluten-free stuff for the house. Don't give him money to go out. take away everything but his homework and his mattress if you have to.

The fact is that lots of food is gluten-free. Grilled chicken, potaoes and apple slices. Porkr chops, potato chips, green beans and chocolate pudding. These are gluten-free meals

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as kareng suggested concentrate on severing naturally gluten free foods in your home.

As to children that do not live in your home, unfortunately as I have found out with my own son,there is not much you can do except be an example for them.

Personally, I would restrict contact between the older son and the 15 year old . That kind of destructive influence your 15 year old does NOT need

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I have already bought everything in the house, food wise, gluten free. There lies the problem. I have been giving him gluten free food for two weeks now. My 15 year old has full blown Autism in addition to having Celiac Disease. He cannot speak, he's speachless, born that way. He takes a bite or two of his food when, I prepare it but no more. Then he shoves it away from his face. When, I change is clothing he looks like he is loosing weight fast now. I took into account the foods he likes to eat and substituted then with Gluten-Free foods. He acts like he knows immediately that these are not his normal foods and rejects them. For instance, he like macaroni and cheese with little sauages on top. The gluten-free version is made of rice flour and the sause is equally gluten free. Even the sausages are gluten free. His breakfast cereals are all gluten free, too.

His brother whom is 33 years old does not support himself, he is a lazy bum, take drugs or abuses alcohol. His mother had him tested and, he will not accept the lab tests or the doctor's diagnoses. My sons got their Celiac Disease through me according to the doctors at the Denver Children's hospital and the VA Hospital Doctors. At one time all my sons lived with me, in my house. Now, only my oldest and my youngest live with me now. My oldest is 37 years old and he says he wants to live and, he is willing to eat whatever it takes to live longer. He does not drink, chew, or smoke. He doesn't even drink coffee, either like me. I do not does those things either. Just how, can I get the youngest one to eat his food? I really am trying daily to come up with foods that they both like. I am beginning to think it is all pyscological with them two. Thanks for the advice....

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You can't help a drug addict until he wants help. You don't need to support him or his habits. That's hard but he isn't your problem right now. The older one that lives with you should be able to help with food and it's preparation.

I don't know much about Autism. Weren't there foods he liked before that are gluten-free? Even if it's ice cream, pudding potato chips, Chex cereal? Most sausages in the US are gluten-free, they don't always say so. Just read the ingredients. Maybe he can have the same sausages even if the noodles are different. The other thing is that, for me, once I had not eaten the gluten pasta or bread for awhile, I wasn't remembering the old kind. Maybe don't serve him his Mac & cheese for a few weeks.

Most kids will eat when they are hungry but I know Autism is different. Maybe don't talk about gluten-free at all. Maybe seeing biggest brother eating it will help.

Talk to his special education teacher at school about some techniques to work with him

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If your oldest son didn't have Celiac disease I'd say don't try to help a drug addict taht doesn't want help. BUT he has been Celiac for a long time right? Symptomatic? Maybe self medicating with drugs to feel better from the Celiac malnutrition. Don't give up on him yet. He needs time to accept the diagnosis too. You were searching for a diagnosis so you were open to it. As with all difficult losses there is a grieving process with anger denial bargaining and eventually acceptance. This is a process and his brain is fogged by drugs or alcohol. I'm not saying he should have his way at all. If he lives and eats in your home he will have to eat gluten free. You are living with two mentally impaired individuals who may be that way because of gluten. Keep trying.

Even with autism there is an innate sense of self preservation. Austistic kids are very sensitive to change. Just keep offering good healthy gluten free options that resemble his favorite foods. Eventually he will eat. Consult his Dr. as to whether the weight loss is in a danger zone and get help monitoring his weight.

Gluten acts like an opiate and there is a withdrawal symptoms for some people when they stop gluten.

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If your oldest son didn't have Celiac disease I'd say don't try to help a drug addict taht doesn't want help. BUT he has been Celiac for a long time right? Symptomatic? Maybe self medicating with drugs to feel better from the Celiac malnutrition. Don't give up on him yet. He needs time to accept the diagnosis too. You were searching for a diagnosis so you were open to it. As with all difficult losses there is a grieving process with anger denial bargaining and eventually acceptance. This is a process and his brain is fogged by drugs or alcohol. I'm not saying he should have his way at all. If he lives and eats in your home he will have to eat gluten free. You are living with two mentally impaired individuals who may be that way because of gluten. Keep trying.

Even with autism there is an innate sense of self preservation. Austistic kids are very sensitive to change. Just keep offering good healthy gluten free options that resemble his favorite foods. Eventually he will eat. Consult his Dr. as to whether the weight loss is in a danger zone and get help monitoring his weight.

Gluten acts like an opiate and there is a withdrawal symptoms for some people when they stop gluten.

Thanks for all your answers to my bigest problems.

Eric 37 year old obeys my orders and his doctor's diagnoses and he eat gluten free foods. He never complains about it above what is normally said about it. He does not use drugs or alcohol or drugs. Good son to me lives in my house with me. Never married.

Bnjamin 33 years old lives in California with mother. Abuses alcohol and drugs even today. He does not accept diagnosis of Celiac Disease. Refuses to admit he is sick at all. Will not eat gluten free foods and calls the rest of us here in Colorado stupid for believing the blood tests and lab reports.

Ishmael 15 years old youngest son has Autism, Mute, and mild retardation born with these condition. Now, newly diagnosed with Celiac Disease. Finding it very hard to eat gluten free foods and gives me a hard time in convincing him, he must eat this way for the rest of his life. He lives with me here in Colorado with Eric.

karl Otto 57 years old self. I have been sick with thiness, no muscle tone, low body weight and high body weight off and on since birth. No one knew what my disabilities were in until the last 10 year or so. Celiac Disease & Hyperinsulinism have bothered me all my life. Doctor never started treating me until 6 years ago. Allot of damage to my body. Yet, the US Army let me go into the military. During Vietnam War Ear Times.

This way you cann all get your cards straight and know a little about my family and how we are trying to deal with this Celiac Disese situation going on.

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There is nothing you can do about the son who lives with his mother and abuses drugs and alcohol.

What foods does your son usually eat? Many foods are naturally gluten free like chicken, meat, fruits, veggies etc. You could try to concentrate on those rather than the specialty gluten free foods. If you tell us what his diet is usually like we might be able to help a bit more. There are mainstream foods that would be safe like Dinty Moore Beef Stew, Kraft and Unilever products clearly label gluten ingredients, Jimmy Dean Skillets with potatos, sausage or bacon, onions and peppers are safe and you just add a scrambled egg. There are more of course if you tell us what he likes we might be able to be more helpful.

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My oldest son Eric whom is 37 yrs old, will eat just about any foods and groups of foods. He eat these ready made gluten free foods from a health food store near us. I have been sick and long time now, I cannot fix his meals and the rest as well. He works all the time and, does not have to the time to cook from scatch. His meals are well balanced with meats of all kinds, veggies, deserts, and drinks.

My youngest son is a very picky eater since, he has Autism and everyone know that Autistic Children seem to pick their own diets and, are very hard to changer their minds. {Stubborn people} He likes macaroni and cheese, gluten free little sausages, fruit yogart, gluten free oatmeal, chereols gluten free, organic milk as long as it is in his cereal. I cannot get him to eat his veggies no matter what I try. I have tried hiding them in his foods and gridding them up very thin but, he still finds them and picks them out and refuses to eat them. When he was a toddler we fed him veggie baby foods from a jar. After, eating them, he would spit them up or his stomach would puff way out for a few hours afterwards. So, for a while there we had to give him powdered vitamins in his food. Then, his body started rejecting them, too. So now, I give them to him only every so often but, not every day.

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My oldest son Eric whom is 37 yrs old, will eat just about any foods and groups of foods. He eat these ready made gluten free foods from a health food store near us. I have been sick and long time now, I cannot fix his meals and the rest as well. He works all the time and, does not have to the time to cook from scatch. His meals are well balanced with meats of all kinds, veggies, deserts, and drinks.

My youngest son is a very picky eater since, he has Autism and everyone know that Autistic Children seem to pick their own diets and, are very hard to changer their minds. {Stubborn people} He likes macaroni and cheese, gluten free little sausages, fruit yogart, gluten free oatmeal, chereols gluten free, organic milk as long as it is in his cereal. I cannot get him to eat his veggies no matter what I try. I have tried hiding them in his foods and gridding them up very thin but, he still finds them and picks them out and refuses to eat them. When he was a toddler we fed him veggie baby foods from a jar. After, eating them, he would spit them up or his stomach would puff way out for a few hours afterwards. So, for a while there we had to give him powdered vitamins in his food. Then, his body started rejecting them, too. So now, I give them to him only every so often but, not every day.

I personally can try and eat all natural foods from the supermarkets but, my sons so far are very weak in mind and spirit. They scream at me all the time and say they cannot tolerate no natural foods. Even though the doctors have diagnosed them with celiac disease, they still refuse to eat natual foods. I can and do have a natural diet worked out for me but, they will not eat anything without sugar, salt, and other spices in it. Whether it is natural sugars or refined, they do not care. Like most people in the beginning they do not give a dam. I do though.

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. I cannot get him to eat his veggies no matter what I try. I have tried hiding them in his foods and gridding them up very thin but, he still finds them and picks them out and refuses to eat them. When he was a toddler we fed him veggie baby foods from a jar. After, eating them, he would spit them up or his stomach would puff way out for a few hours afterwards. So, for a while there we had to give him powdered vitamins in his food. Then, his body started rejecting them, too. So now, I give them to him only every so often but, not every day.

If he has a physical reaction to veggies (and you are sure that that is what he is reacting to) then it sounds as though he has an intolerance to them and he knows this and that is why he refuses to eat them. Is it all veggies or only some of them? For instance, I cannot eat the nightshade vegetables - potatoes, tomatoes, peppers, eggplant. I also cannot eat the legumes and this includes green beans and peas. So is it all vegetables or only some of them?

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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.

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You still did not tell me what veggies he is refusing. Do not tell him what he is eating is gluten free. There is no need to describe it that way since so much of what he would normally eat would be gluten free anyway. Like all veggies. Tell him they are gluten veggies if necessary :o Give him the macaroni (gluten free) and cheese and tell him it is gluten, not gluten free (Okay, so you are lying, but it looks like some subterfuge is going to be necessary to counteract his autism). And if you can once get him away from the gluten his autism may well improve. Are there any veggies at all that he will eat? We are not going to be able to help you if you do not answer our questions.

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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.

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I was not likely glucose issues that destroyed your teeth it was more likely the celiac as that has dire effects on the tooth enamel.

I would suggest asking his social worker for help with this. Perhaps they can link you up with a dietian. If he doesn't like 'gluten free' food feed him food that is naturally gluten free as there are many out there. A visit with a dietian should be covered under your medicaid or medicare. Gluten is addictive so your older son will continue to have problems with cravings for a while and if he gives into them the cravings will continue.

I would also suggest that you ask to see a counselor for yourself to help you get through this.

There are many here who have had severe impacts to their bodies from celiac, I am one of them. Many have also have blood sugar issues including some that are full blown diabetics, and we have a few of those on the board. It took work to become healthy again but I did it. I could barely walk at diagnosis and lived in constant pain but I asked for and got referrals to a therapist and a physical therapist to overcome those issues. Even when I couldn't walk, or at diagnosis even talk or think I still refused to allow myself to think I was disabled or to let others label me that way. When I couldn't leave my house I started working over the computer until I healed enough to be able to look for first a volunteer job a few hours and week and now am healed enough to look for a paying job. You can overcome your 'disability', you just have to perhaps look to someplace like VESID or other programs. You say you spend most of your days laying in a hospital bed, well fight to get out of that bed. It can be done, one step at a time but you have to want to do it. Don't worry about what your young adults are doing work on yourself first and if needed get help from a social worker for your disabled son.

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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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Of course your body has damage. So does mine and lots of it is permanent. I am 55 and was celiac from the time I was 4 or 5 years old and wasn't diagnosed until 9 years ago. It took me years to recover, it was almost 5 years until I could even read a book but last year I went back and finished my last sememster at school. I have two children who are also celiac and were not diagnosed until they were in their late teens and it severely effected them also. You should read my signature. I had a similiar childhood. We were extemely poor and I was also a very sickly child. I was so small that the military wouldn't even let me in in the early 70's because I didn't weigh enough. My twin brother died likely because of undiagnosed celiac and like you my Mom died young and looked 80 when a celiac associated cancer took her in her mid-fifties. She never weighed over 80lbs in all the time she was alive. If anyone knows what you have gone through I do.

I'm not saying you don't have damage but I am saying that you can fight to get back to a point where you can live at least a semi-normal life. You may need help to do so, I know I certainly did, but it can be done and has been done by many of us.

Did you do the drawing that is in your avatar? If you did you are very talented. If nothing else your drawings may sell over the internet or in shops close to you. That is something you could do even if you remain homebound and many would really appretiate your art. I have very little money and am also an artist and my drawings are what people get every year as Christmas gifts. I can't bear to part with the originals but Staples does good copies of them for me.

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I have been reading along. It sounds like you are too sick to deal with all the other stuff. Tell the adult son to get his own place and let him decide if he wants to be gluten free or not. He is a grown-up he should live his own life. HIs bringing gluten into your home would be one less thing to worry about.

The younger son has too many problems for someone as sick as you to handle. Where is his mom? Maybe she can take him. I don't see how you can take care of him properly and it isn't fair to you, as sick as you are, to have to deal with all his stuff.

My mom won't admit she should eat gluten free but she is old and has her own house so I can't force her. I can not allow her to eat gluten at my house.

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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.

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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.

Karl you are quite talented. I don't know if you are familiar with Ebay but at this point people can list up to 50 items a month and you don't pay anything if the items don't sell. You can order postage right through Ebay for less than at the post office and even arrange to have the Post Office pick up your sold items. I also was homebound for years and only went out for a hour or two a day and even that was torture. I had been a pack rat for years and started selling items on Ebay then. It can bring in some extra money and they have catagories for artists that sell their own work. It might be something you could try at least until you have healed a bit more. Sometimes it can take a while to get established so early on you might not get as much as you really want but if you start your auctions off low you should eventually get a following.

It does take a very long time to heal when we have been as sick as someone like you or I was. I never thought I would get better, but I did. Glad to hear you have gained some weight. That is a good sign. I hope you continue to improve but at times it is a long fight.

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Karl, thank you for sharing your story with us. As you can see, there are a lot of compassionate people here who understand what you are going through (and have gone through) and will try to help you in any way they can. I agree with what they are advising. You do need some help with your youngest son. Ravenwoodglass is more familiar with what is available than I am, and I would follow her advice and seek whatever asssistance you can find.

It IS a long struggle to regain our health, (some of us are a lot older than you would think - I did not even find out about my celiac until I was over 60), but it does not matter how old you are now or how siick you still are, you can get better than you are now, and you will. Just by being here you are proving you are a fighter, and that's what it takes to get better. You have received some good suggestions. I hope some of them work out for you.

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Have you tried fruit smoothies and shakes? My son has autism and I blend avocados into carob or chocolate shakes, almond meal and kale into fruit smoothies for protein and nutrition, not detectable unless he sees me doing it lol! also I put his smoothies in a colored, covered plastic cup so that he can not tell that it is slightly green- or add blueberries to take out the green!

If just one time something is off about his food it is hard to get him to eat it again. These children are very rigid, yes it can be frustrating! i have had most success with shakes and smoothies and i feel good that he is getting some nutrition. Perhaps try a different sort of gluten-free pasta, such as bionature- I am funny about pasta and this is the best! Does he eat fruit at all? Bananas??

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