Started This 30 Years To Late, Wish We Had Known Much Earlier :(

[New-To-This]

Unfortunately my dear husband ended up in the hosptial Saturday night. Long story short he will be there for most of the week. He has diverticulitis and diverticulosus as well as the small intestine so swollen it was blocked and causing sever pain. So sever that it took 2 doses of morphine to get it to a point where it was bearable. When he comes home he will be on a gluten free soft foods/ liquid diet for a month or longer. Hopefully that will clear up 30 years of damage. We will be seeing a specialist to see where we go after he's been on the liquid soft foods diet for a month.

He had the H1N1 flu and quit smoking about 10 weeks ago so his immune system was trying to adjust when he had his flare up a month ago. That is when we went on the gluten free diet. During most of this time as well as the last 30 plus years he has had bloody stools as his intestines where in such disarray. We think if we had known what was wrong years ago we might have been able to heal his intestines with the gluten free diet, but its been to long and to much damage had already been done, and that is why he ended up in the hopital.

I am hopeful we will be getting his system back on track and we WILL be continuing with the gluten free diet. After the pain he was in he said there is no way he will cheat on this diet if it will prevent this from eve happening again.

This is the first time he has been in the hospital since he was born over 50 years ago, so this has scared him quiet a lot.

Keep us in your thoughts and prayers and thanks again everyone for all your insight and help. I am sure I will be asking a lot more questions, as we live in a small town and are working with a small hospital until he is well enough to see the specailists. Any help with finding cream soups and soft foods that will be tastey and gluten free would be GREATLY appreciated.

[ciavyn]

If it's any comfort - a friend of mine was 65, and ended up in the hospital with similar issues. He almost died. They discovered it was celiac, put him on the a gluten free diet (I think his was liquid in the beginning, too) and he's back to traveling all over the world 80% of the year for his job for the past year, now 67 years old. He's who convinced me to look into this lifestyle change, and it's helped me tremendously. Hang in there.

[lcarter]

I can relate to the extreme pain your husband was in with swollen intestines and visits to the emergency room. No one ever thought of Celiac all those years, so finally had to figure it out for myself. If we had been born European it is far more likely that we would have been diagnosed much earlier, since celiac disease has been commonly treated there, especially the Scandinavian countries, for many, many years -- oh well, we have to live with what is. Sometimes, US medicine is not as great as it is hyped to be. As for the creamy soups....do you have a slow cooker? If not it will be of great help to you by making food prep soooooo much easier. I frequently make soups in mine. I put everything into the slow cooker in the AM and set it to cook on low all day. It's ready after 6-10 hrs, depending on the recipe. There are many easy to put together slow cooker recipes available on the internet. Also, I make 1 cup natural brown rice, 1/4 cup quinoa and 1/4 cup amaranth in the rice cooker [though this may not be on your husbands diet right away] to eat along with the soup. It makes a wonderfully easy and very nutritious meal. If you aren't familiar with quinoa and amaranth yet...you need to get aquainted with these fabulous gluten-free grains, which are two of the most nutritious grains known to man. They are a god-send for those of us with celiac disease. If your husband can tolerate dairy, don't forget custards and puddings, which can be nutritious too. Good luck!

[twe0708]

How horrible! So sorry and hope he gets better soon! I can't believe that when someone goes in to see their doctor about messed up bowels and stomach pains that they just don't run a simple blood test for Celiac. Instead they diagnose it as IBS or go home and take some Metamucil! How much can the test really cost! Makes me mad! Hope he gets better soon!

[WW340]

Sorry for your husband's problems. I hope he will mend quickly.

Progresso has several soups that are gluten free, such as clam chowder, chicken corn chowder etc. There is a recent list here on the board. glutenfreeforum discussion

Gluten free mac n cheese would be good. I make my own, but some people like Amy's. Potatoes topped with cheese and sour cream would be good and soft. No meat lasagna.

Eggs are always my friend. I learned how to make omelets on the internet. An omelet is always good for breakfast, lunch, or dinner. Quiche can be made without a crust. Scrambled eggs are good. Egg salad, tuna salad, chicken salad would all be good.

[GFinDC]

Did they test him for celiac? Just curious, it sounds like he could definitely use a change of diet.

I suggest staying off dairy for now, as many celiacs do have problems with it, especially at the beginning of the diet. He should take a calcium and D pill though. There is calicum in a lots of foods besides dairy.

There is something called enteral food, that is a liquid nutrition some people use when healing.

[Welda Johnson]

I'm so sorry for what you and your husband have been going through, and will hope & pray that he is now on the road to recovery. I want to encourage you to be hopeful, because I am 65 and have had Celiac symptoms since age 8, however, as with your husband, it took many years to find out what the real problem was. I've been on a meats, fruits and vegetables diet for years, and often eat just fruit and vegetables. Such additives as casein, whey, yeast, msg, etc. can also cause problems. it seems that the simpler the diet, the better. I will remember to pray for you both, and if you have any questions, please feel free to email me at welda@att.net

[New-To-This]

Since we have been gluten free for a month now, we would have to go back on the glutens in order to be tested. He has had several blood tests and his blood sugar was a bit off, but after rechecks it came back normal. Also his white blood count is elevated but that is because of the circumstances. And his calcium was a bit low. Other than that everything is coming back normal or better than normal. So they have ruled out diabetes, kindney problems, pancreatic problems, spleen problems etc. I understand why they did this and am greatful that they want to be sure there are no other issues as well. He is in a small town hospital, but the docotr he has is wonderful, he admited right off he didn't know much about celiac and would get the test ordered. He came back 30 minutes later after doing a little checking on line and said "I'm sorry but I can't order the blood tests unless you go back to eating everything that's making you sick to begin with." He further stated he didn't think that was a good idea. Hard not to like a doctor who can say he doesn't know AND takes the time to do a little research! He also said he could help us get set up with a specialist for further down the road if needed after Mikes healed.

I really appreciate the web site! Thanks so much! That will definately help when he gets home. He likes the soups mentioned so that will make life easier for him. Mac & cheese has never been a favorite, so I'm not going to push it now either. We egg eats on a regular basis around here as we have hens that lay 12 to 14 a day

He was up walking today and had clear liquids for breakfast and lunch. He was pushing so they gave him soft food for supper and after to bites his gag reflex kicked in so tomorrow its clear fluids again. He at least is listening to what his body is telling him no matter how badly he wants to come home. He is getting bored with the hospital and says he can sleep better at home than at "Club Med". It amazes me how rude the other patients visitors can be, don't they remember they are in a hospital not at a party somewhere?!?!

Sorry had to blow a little steam there, lol!

We haven't had the blood test and Mike hasn't been in a hospital since tha day he was born, except to visit others so this is a new experience for him. He also hasn't been to a doctor since he was in 2nd grade and went to have ear wax removed.

We eat a lot of home grown fruits and vegeatbles as well as raise chickens for butcher and for eggs. We get a half a beef locally. so I can't help but wonder if we had been eating as much processed foods as most of the general population if he would have been sicker a lot sooner, or worse have died. The main things we need to change are the breads and flours I use. Even the seasonings I use are gluten free as luck would have it, lol! And we don't use most condiments or quicky foods. So cleaning out my foods wasn't as bad as I thought it would be. I sent a few things with our daughters in college. But most of what we had already fit in the guidelines of what ingredients are same, thank goodness.

I am so grateful for this web site and all the wonderful people who are teaching us what they have learned from their own experiences. Without you, newbees like us would be at a lost as to where to start. When our dietitian came in to see what we already knew, she was surprised by the information we had already found on our own thanks to people like you. I had several of the lists with me because I was afraid WE would be teaching them what was exceptable and what wasn't. We are fortunate to have a dietittian who has family with celiac and so is our small town hosptial. Although the doctors know theyt still have a lot to learn they also no they have a great dietitian who can help out the patients.

Exciting news today, for the squimish cover you ears..... Excited because my husband could pass gas, which means things are starting to move!!!!!! And hopefully the inflamation is starting to come down at least a little!

Anyway for me its late and I've had an exhausting few days, so good night all, and again thanks for all the great advice and well wishes!

[GFinDC]

That's good news New To This. The gluten challenge to get the blood tests to work is probably not a good idea, IMHO. If you want to get a test done, though, the Enterolab stool testing may be a better choice. The doctor (Fine) who does them says they show antibodies up to a year after starting the gluten-free diet. His tests aren't accepted by all mainstream doctors as diagnostic though.

But if he is feeling better and has no problem with sticking to the diet then more tests for celiac don't really matter. Some people want a positive test before they will commit to the diet.

Sounds like your diet is already pretty good. You might want to get some gluten-free flour mixes to try. I use Tom Sawyer brand gluten-free flour. There are several others like Jules flour and Better Batter that people like. You can also get Betty Crocker gluten-free cakes mixes now. There are lots of recipes in the recipe/cooking forum. I think it is better to wait on those kinds of things (baked goods) for a while though until he is adjusted to the diet.

While he is in the hospital they should check his vit D and Vit B levels and iron etc. Celiac causes malabsorption so we tend to be low on some vitamins. Some people get liquid B-12 to take at first. Remember to get gluten free vitamins and medicines also.

[GottaSki]

Healing prayers for your husband and prayers of strength for you.

He can heal. My system was a mess and was very seriously ill when diagnosed in March. At nine months I am feeling younger than I have in 20 years!

I hope you both have an easy transition to gluten-free. Sounds like you'll do well because of the frustration of going undiagnosed for so long. I know I went thru a period of great anger for all the lost years while doctors were dismissive of more mild versions of the same symptoms I was diagnosed with. All that time my health could have been restored by something in my control!

Good Luck to you both.

[Ahorsesoul]

Your dh has a hero with you by his side.

[DianeBinNY]

I have a question for the people writing about having swollen intestines. For about 5 months I have a part of my intestine that rises up out of my stomach, only when I lay down at night. I went to the dr thinking it was a hernia but they said it wouldn't come out when you lay down, it would fall back into place if it was a hernia. They sent me for a CAT scan and it came back that they could see it happening and that it may be due to no inner-abdominal fat. They told me to do sit-ups to make the muscles in that area stronger and maybe it wouldn't keep happening. I'm wondering now if it's a swollen intestine which I had never heard of before. It happens almost every night. It's about 3 inches long and rises up about an inch. It's really weird but doesn't hurt or anything. I went to the Celiac Disease Center in Manhattan and mentioned it there and they asked Dr. Green but he had never heard of it. Any ideas? Thanks.

[Mtndog]

Keeping you both in my thoughts and prayers!

[Ahorsesoul]

New to this, How is you dh? And how are you holding up?

[New-To-This]

New to this, How is you dh? And how are you holding up?

My Dear husband came home on December 16th late in the evening. He had an endoscopy that afternoon before being released home. As it was the holidays we have not heard anything yet. Friday I called and asked that someone look into the results and get back to us. My husband is doing much better and is not falling asleep at 4:30-5PM anymore, he is now making it to 7-7:30PM before he falls asleep in his chair. So we are seeing progress, lol. He is still dealing with fatigue, as is expected, but it is getting better.

I have been doing a lot of reading, and learning tons of stuff. One of things we found going to a small community hospital is we knew as much if not more in some areas than the hospital staff. Our doctor was not only willing to admit he knew nothing about celiac and would order a test, he was also willing to get on line and get information. Which prompted him to come back to my husbands room and tell him we can't do the blood tests because you need to be eating gluten in order for it to show. The doctor said because we where gluten free for a month before going in we would have to go back to gluten foods for the blood test, and he said "I wouldn't do it if it was me". We knew as much as the dietary staff which surprised her as she has family members with Celiac, otherwise we probally would have known more. We where the first case that the dietarian was aware of that was hospitalized in our community.

I had bought a turkey for Thanksgiving and it had wheat flour in the base, and even though we felt fine it propbally wasn't a good thing to eat! Why does Jennie O OR any other turkey processor put wheat flour in the bast????? We thought we where buying a turkey, what a shock! I had bought several and had to give them all away!

For Christmas I found a free ranged organic turkey and we had that, it was fabulous! So maybe I'll raise a few of them as well as my chickens this spring, lol!

We had originally planned to go to FL over Christmas, but stayed home as the DH was just home from the hospital and on the mend. We are planning to go in about 10 days, fortunately we RV so I can do all the cooking, instead of eating out. I made a list of things I need to replace in the RV as well, thank ggodness its still free in my mind or we could have a cross contamination problem because it was months later and had forgotten about having to replace things. I still need to get a cutting board for the RV and have a new toaster and new utensils to replace the old. I even went out and bought new toothbrushes, lol! Last thing I want is to be in the middle of no where, unsure of what state or county I'm in in the middle of the night and needing an ambulance, so caution, caution, caution is my motto for preparing the motorhome for this and future trips.

Overall he is doing a lot better, we had toast, eggs and bacon for breakfast Sunday morning and he had some issues so we are trying to figure out if it was the gluten free bread or the bacon, as we haven't had either for over a week. It is nice being able to ask yourself was it X or Y and not what was it, lol. So we are going to try having only bacon next Sunday as we hear that in the early stages of recovery sometimes even gluten free bread is not tolerated well. If we still have problems we'll try toast without bacon the following week. If there is still a porblem than we have elliminated both for now at least.

[ravenwoodglass]

Glad to hear that he is out of the hospital and doing better.