Wednesday, April 27, 2011

Simple spinach dip.


Sometimes I make stuff that tastes good. My kids say that it tastes good more frequently now than it used to. While that makes me feel good now, it makes me wonder what my food used to taste like. Never mind, let's stick to the present.

Everybody at the table loved this. It could use some tweaking, but it is very simple and easy. I used half a bag of baby spinach from the store. I can't wait to buy it from the farmer's market soon. I also used a thing of sour cream and some salt. Told ya it was simple.




I filled my food processor. I bought this thing for $5 at a garage sale 2 years ago. I think I get alot more use out of it than the previous owners did.

 See? It works great! I Like to have some chunks left, but it will keep going till it is complete mush.
 Add some sour cream and mix it up. The more sour cream you use, the less spinach taste. I like the spinach taste though.
 Now taste it! Yep you guessed it! Needs salt. Add it until you are happy with it. Remember to add a little at a time. If you like it thicker I would suggest using cream cheese as well and blending the cream cheese and sour cream together till smooth then adding the spinach. I will probably try this next time anyway. Maybe make more of a spread or a thicker dip at least.


We have to keep a detailed food journal of everything we eat. To make sure we are eating safe food in safe amounts and also to document when we try new things. That way if we have symptoms we can look back to see exactly what caused it.
I tried a new smoothie recipe. We aren't really supposed to have cocoa. But my kids really missed chocolate so I made one just once. The only symptom we got was a headache from the caffeine. So we will try it again with less cocoa and no yogurt. We have decided to cut that out too.

Monday, April 25, 2011

It has been brought to my attention

That I need to go more strict with our already strict diet. There are some things I can add to ur diet but several things that need to come out. Like wheat. I just talked to ur dietician from the UIHC and she told me that I need to cut out that as well. There are other grains we can use to make bread but I have never tried them. Which means that those snack crackers have to go too. And other junk food like puff corn. I hadn't even had them long enough to add to the safe list.

And then the doctor's office called. They had some of the test results back. Everything looks fine except my son's blood test showed he had ketosis going on. That is when you have no glycogen stores in your liver and your body starts burning your fat for food. If it goes on long enough it can cause problems. The nurse said she thought it was fine because he had been fasting. I said no. He had not been fasting. We had just eaten lunch. I made sure he ate before we left. According to my diet journal he ate the following: breakfast- oatmeal with butter and dextrose (glucose). Lunch- corn noodles, turkey, cheese and pickles. then he came home sick and ate home made bread with butter. that was all before we left for the appt. There was plenty of glucose and carbs there. So we will have to get more tests done. In the meantime I really need to get him to try to eat more carbs.

They also called to let me know about the appt for his echocardigram (i think that is how it is spelled), and my appt to get formally diagnosed. His chest pain keeps getting worse. I am scared for him.

Tuesday, April 19, 2011

A new Diagnosis.. Ehlers-Danlose Syndrome Type 3

I went to the appointment yesterday expecting to get answers. I wanted to know why my children felt and acted like they did. It wasn't normal kid behavior. It wasn't just their age. They weren't just lazy. I knew something was wrong. I could see it in their faces. The dark circles under their eyes, the lack of energy, the bruises that came out of nowhere, the clumsiness, and the un-talked about diarrhea and constipation. All of these things, I was being told were ok, normal, expected. But I knew something was wrong. Nobody wanted to help me figure it out. They weren't worried because they hadn't had any organ failure or other extreme health issues. I was worried because I could tell that what we all had would turn into what my mom and I have... Pain. And not just pain, but PAIN. CONSTANT. All the time pain. When we move, when we don't move, when we breath, when we hold our breath. It is a living HELL being in pain all the time, being tired all the time, feeling so weak in my muscles. The last thing I want for my children is for them to feel this way. So, I started seeing doctors. I got my stomach tested for sugar intolerances and found out I had fructose intolerance. So I figured that maybe my kids had it too and I wanted to get them tested. The pediatric gastroenterologist told me they couldn't possibly have it. Guess what? They all had it too. SO, if we all had it maybe it was genetic. They referred my kids to a metabolic geneticist. We had that appointment yesterday. I wanted to test for hereditary fructose intolerance. It seemed logical. After 5 minutes with this doctor I felt like someone believed me.

She said she would draw blood and do all the tests I wanted to make sure that all their organs are fine. We have to wait for the results but in the meantime she wanted to ask me some questions. As we were going through the list of questions, she noticed I had burned my hand. She asked about it and I told her how clumsy I was and how injured I can get. She immediately asked to see my hands..... then she bent my thumb back until it touched my arm. Try it... I will wait.... See if you can do it too..... Can you? You are not supposed to able to. If you can you are hypermobile. Joints aren't supposed to be that flexible I guess. She had me bend some other things too, fingers, arms, knees, then she had me bend over and place both hands flat on the floor while keeping my knees straight. I thought it was normal to be able to do that. But no. It is not. Well by now I am feeling pretty abnormal. You know, this was supposed to the kids' appointment.

She looks me in the eye and says..... "You have Ehlers-Danlose Syndrome..... type 3. That is the Hypermobility one."

Ummmm. I was not prepared. That wasn't on my list of possibilities and I felt caught off guard.

Then she says, "I am diagnosing your son with it too. We can't officially diagnose your daughters until they are 5 years old so I will see you back on their 5th birthdays to confirm they all have it officially." So all my kids have it too. She also said that based on my family history, she can guarantee me that my mother and my mother's other children have it as well.

So if you are related to me through my mother's side of the family....... you might want to try these tests. This condition is related to other health issues as well. Impaired healing, GI issues, chronic fatigue and chronic pain.

Please read the links posted in the reference section.

There is no cure. Only management. We ave to protect ourselves from serious injury while trying to live normal lives. Healing can take longer than normal. There are also GI issues like chronic constipation and chronic diarrhea that can injure our insides. I will be getting with a dietitian to figure out a safe way to include fiber in our fructose free diet.

On one hand, I am happy to have an answer. I have lived my whole life wondering "why me?" Now I know. I can not make the proper connective tissue. My "recipe" is all wrong. I can tell my kids why they feel the way they do. I can sympathize with them and help them find ways to cope.
On the other hand, I am very sad. I had set out to find a reason so that I can prevent my children from having chronic pain. I now know that I might not be able to prevent anything. They will develop it if that is how their body is going to express that genetic defect. All I can do is try to keep them from injuring themselves in a way that will exacerbate their condition. That makes me feel helpless. I wanted to save them from my fate.

List of Dietary Fructose Intolerance Links

List of EDS links.

Monday, April 18, 2011

Adventures in Cake Making!


So instead of trying to make a simple cake I decided to make a yogurt pound cake and yogurt cream cheese frosting. I had a lot of yogurt in the fridge and it sounded good.

First I preheated the oven to 325 deg and then greased and floured the bundt pan. You have to remember the flour part. I always forget to flour the stupid pan. Flouring after greasing is very important. I have learned this after royally messing up some otherwise good stuff by having it stick to the pan and coming out in chunks.


Then I sifted together 2 1/4 cups flour, 1/2 tsp baking soda, and 1/2 tsp salt.




I run it through the sifter about 3 times.
All nice and finely sifted.




In another bowl, I creamed together 1 cup butter and 2 cups dextrose.



Then we beat in 3 eggs, one at a time. Then add 1 tsp vanilla extract. I found some vanilla that uses glucose instead of corn syrup.


Then we need to add the flour mix and the yogurt. I used 8 oz of unflavored plain whole milk organic yogurt. you want to alternately add the flour and the yogurt until just incorporated.

I forgot to take pics of it poured into the bundt pant. It was really thick and didn't pour. I had to scoop it and smash it in there. It said to bake for 60 min. So in the meantime I got busy with the frosting. I used 14 oz organic whole milk Greek yogurt, 4 ounces cream cheese, and 4 oz butter.



Beat until creamy. Then we will add about 4 cups dextrose for now.

Taste it. It won't be as sweet as other frostings because dextrose is less sweet. Table sugar is half glucose and half fructose. Dextrose is all glucose. Fructose is sweeter than glucose and that part has been removed. I do not suggest adding more until it is candy sweet. Get used to less sweet stuff. Too much dextrose will raise your blood sugar just as well as regular sugar, but taste half as sweet while doing it. Have you ever eaten too many smarties? or too many Sweet Tarts? Those are dextrose candies with artificial flavor.

Looks like the cake is done. I flipped it over to take a picture of the top. I forgot to do that before I took it out of the pan. It came out very nice and very easy.... because I remembered to flour the pan. :)




I separated the frosting into 2 bowls. One we colored green. The other we added more dextrose to until it was more like icing and the added some Fun Dip, the strawberry flavored. It isn't very artful, but my daughter loved it. I have no talent for cake decorating. We did put it in the fridge to help the frosting set. It is made out of yogurt and was runny at first. But it got stiffer in the fridge and stayed that way without needing to be re-refrigerated.


It was very popular. The kids loved it!


The leftovers didn't last long. They all wanted it for breakfast. Laura ate the head. I couldn't keep my hands off it either. Yummy!

Things I would have done differently.....
Well, first off, I would not refrigerate a pound cake. Especially before it is fully cooled. I will definitely make it again, but I will use an icing instead. Melted butter mixed with dextrose and drizzled on.

The frosting was awesome. I am so glad I made an insane amount and saved all of it. I will be using it on the next cake, which will be a simple regular cake. Shaped as a butterfly. The strawberry icing was the best part. I know it was artificial flavor and color, but at this point we can't use real strawberries. They have too much fructose.

A list of safe foods.

I will keep this list current and updated so that you can reference it when making suggestions on how to improve the food. :) Always remember to read the labels please, the sugar can be hidden. You have to look in the ingredient list and on the DV square. We have recently been able to add way more foods than I can list. So I have decided to then list what foods we actually eat on a regular basis. We can have treats now and then. As long as we go back to a strict diet for 3 days or a week after.
Baking:
bread home made by me
Arnold's Italian Bread. Will say "No High Fructose Corn Syrup on it".
http://arnold.bimbobakeriesusa.com/Products/Description.aspx?sSku=7341013959
oats
dextrose (100%) I have been buying bulk from Stringtown grocery.
stevia (pure extract powder) (might be cutting out)
hershey's 100% cocoa (gives us headaches and is a fructan, use sparingly)
corn starch
Spices are ok. Use in moderation. Garlic and onions are now ok as long as they are cooked.
baking soda
baking powder.
olive oil
coconut oil
Glucose based vanilla extract.
Crisco Shortening (might be switching to something else)
Distilled White Vinegar
Apple Cider Vinegar (small amounts)

Meat:
meat
organic brown eggs (free range from kalona, or from local farms) the others make their stomach upset. Although we can eat store bought eggs in stuff.
Hebrew national kosher hot dogs
johnsonville summer sausage, read label.
Oscar Meyer oven roasted Turkey Breast.

Dairy:
milk unflavored (prefer whole)
cheese - no spreads- 100% cheese,
cream cheese
butter
sour cream
Pasta and Rice:
 (be careful, some add bran. any kind of bran or germ is not tolerated. so no whole grains or noodles made from veggies etc.)
rice pasta and rice crackers.
Corn and Quinoa noodles.
enriched white rice
We can add back in regular noodles. Plain noodles, no added ingredients or whole grains, or carrots or anything.

Veggies:
Russet potatoes - only kind of potatoes allowed
mushrooms are allowed but they dont like them
spinach
broccoli (they really like this covered in cheese)
Canned green beans
HFCS free ketchup
HFCS free tomato sauce (like on spaghetti and stuff)
Dill pickles
I have been able to give them lost more veggies as long as they aren't the bulk of the meal. Squash, eggplant and zucchini are still not ok.

Drinks:
teas with no sugar
home made lime ade= 2 large lemons and 2 large limes, juiced. 1 gallon of water. 1 cup dextrose, 20 scoops stevia (remember to level the scoop, a little goes a long way!).
Whole cow's milk
homemade milkshakes (Strawberries, yogurt, and stevia )
We have been able to add in Blue gatorade. Made ourselves out of the powder. As long as we dont overdo it.

Snack food:
potato chips. (Most flavors are ok.)
Puffcorn
cheetos
Doritos (retro style)
Chicken-in-a-biscuit crackers
Goldfish crackers
cheez-its
String cheese
cashews and sunflower seeds (but Laura doesnt like them)
Fun Dip
Smarties
I usually dont give them snacks very often. I prefer they eat their meals. The meals are way more safe than snacks. I am so glad we don't have to be wheat free anymore.

Saturday, April 16, 2011

Dinner at my place.

Have you ever wondered what I eat? If I can't have fruits, most veggies, whole grains, and no sugar. What does that leave? Mostly Meat and dairy. And I, personally, can't do much dairy. So that doesn't leave me with all that much. I can, however, eat meat. All kinds of meat. And potatoes. Well, ok, only one kind of potato really. But I did make this for dinner.

A beef brisket. Seasoned with only salt and pepper. It literally melted in my mouth. All I did was put it in a roaster pan with the lid on half submerged in water for about 2 hours.

A side of Hot Crash Potatoes. These were a real big hit!

Russet potatoes, quartered and boiled in salted water. Then you smear olive oil all over the pan, smoosh the pieces skin-side-down, then paint with more olive oil, salt and pepper, and bake at 350 deg for 25 minutes. Even my husband liked it. He isn't usually so enthusiastic about my cooking. He even told other people about it.

Sorry the picture isn't too clear. I haven't figured out this camera yet. I also didn't take a picture of the bread I found or the dip I made. I found some sugar free (or so it said) bread at Wal Mart. It wasn't too bad, but I will remember to make my own from now on. The dip was awesome. My husband loved that too. Half a bag of spinach all ground up in the food processor mixed with sour cream and salt. We dipped our bread in it. Oh Yummmm.

It was so good. I will definitely make that again.

Next will be an adventure as a I make a birthday cake.

Thursday, April 7, 2011

The hidden sugar.

How well do you read the labels on the boxes? I, apparently, don't read them all that well. I thought I did. I can recognize all the different names for sugar on the list. I know what I can have and can't have. But I did not think about "natural flavor". It hides there too. you have to look at the part where it lists how many grams are in there. You are not really safe unless you look there as well.. They can hide anything they want in there and call it "Natural Flavoring". And they don't have to tell you what is in there because it is copyrighted or manufacturing secrets. Or so I was told by the lady who answered the phone at the company I called today. It was a simple box of organic gluten free mac-n-cheese. it had all natural ingredients. I could read everything on the list. But then I got to wondering about what the natural flavoring is. They aren't talking about the cheese and milk itself because those ingredients were listed. So I had to call. And now I am pissed.

I was lied to. I am used to being lied to by regular companies. I know they hide all kinds of stuff in their food. I thought that since this was a reputable, organic, gluten free product made by a well know manufacturer that it could be trusted. But the ingredient is "Evaporated cane juice". Sounds ok, right? No, it is the same thing as sugar. Sucrose. The only difference between it and table sugar is that the minerals get processed out of white sugar. There goes the rest of the boxed food I was eating.

I was also a little mad at myself for not thinking of looking there. Well, I just started this lengthy study of dietary needs. I just recently found out it mattered so much. I had for years believed the whole food pyramid and it is now being turned upside down. Real big changes can be hard to deal with. I think humans are hard wired to be creatures of habit.

Sunday, April 3, 2011

Living the Journey

Is it plagiarism to steal the title of your Reverend's sermon? Oh well.
He had a great point today. Even though I am a pagan I still like to have spiritual community. For that, I attend the Unitarian Universalist Church closest to me. Absolutely love that place. I love listening to the sermons. He always has something interesting to hear. Today it hit home more than usual.
I have been going through a lot lately. Dietary changes, personal issues, worrying about my children, and basically living. Most of the time I forget to take time for myself or time to play and enjoy life. All I think about is my purpose. Finding the answer. The answer to our health problems. I spend all my energy on it. My children beg me to read a book to them or play dolls or go outside. But I am too busy researching symptoms, causes, or one of my various other interests related to childcare, cooking, or sewing. I forget to stop. Stop and play. Stop and smell the roses. Stop and cuddle my children. It is sad really. All the time I spend caring and worrying and it is the time spent playing that I forget about. Not just for them but for me as well.
That is exactly what the sermon was about today. Perfect timing. They even had a puppet show. That's right. My church put on a puppet show.... for the adults. The children had already left. It was funny. It was about a circle who had a missing piece. He wandered around looking for his missing piece. Along the way he smelled the roses, and watched butterflies, and played in the grass and snow. He tried many different pieces but none were his piece. One day though he found his piece. It fit perfectly and he was a circle again. He rolled and rolled and rolled. He rolled so much he went right by the flowers, the grass, the butterflies. So he stopped. And he realized that all the rolling wasn't as fun as he thought it was. So he carefully put down his piece and rolled away. He went back to looking. And along the way he smelled the flowers and looked at butterflies, and felt fulfilled. Because he was living.
It is good to have a purpose, a plan. But you have to live along the way. Just what I needed to hear as I continue my quest to solve the biggest mystery of my life.

Saturday, April 2, 2011

My alternative to table sugar.

I know I can have dextrose. I found some at a health food store. It isn't as sweet as what we are used to but I am sure we will get used to it. The kids like it as it is. However, I know it will turn to straight glucose in them and give them easy energy. I know they aren't used to it too. So i figure if I mix it with stevia and maltodextrin it will lessen the blow. Stevia is sweeter so it evens out. I find we do better when we eat dextrose several times a day in measured doses. Too much and you got crazy kids. I feel like I drank lots of caffeine, except caffeine never really got me to get up off my butt. It just made my mind go fast. With dextrose I feel like my muscles have energy too. Because they do.

I bought some stevia at hy-vee. It is mixed with maltodextrin. It does leave a somewhat diet taste behind but it isn't that bad. I mixed the stevia mix with the dextrose, half and half. 3 cups of each sifted together.

I tested it out. I took plain unsweetened yogurt. I added the mix till I thought the kids would like it. Then i beat it. I was trying to see if I could thicken it for frosting. No. Not really. So I added almond flour. Still didn't help. But I put some in a bowl and let the kids have it. Laura, the 3 yr old, took one bite and yelled out "THIS IS AWESOME!!" The other kids agreed. I was happy I could make them happy. It might not work for frosting but maybe I can freeze it for ice cream. Put it in popsicle molds. Sounds Yummy. I think I will make the frosting with cream cheese and the mix.

This is not a diet food. I am not trying to lose weight anymore. I quit trying about 10 pounds ago. Do be careful, some people get hyper on sugar. If you haven't been able to digest all the other sugars (they go right through me and have never made me feel energetic) you will get a rush off of this stuff. That is why I mixed it. All this energy was scary at first. I didn't know what to do with it.


eta: we slowly cut out the stevia and maltodextrin as we got used to a less sweet diet. now we are only using the dextrose. the stevia and maltodextrin was starting to give us stomach issues as well so we figured it was time to cut that out too.

A Happy Post!

Cause I got good things to say today. I was diagnosed before my kids were. I was given dietary instructions but no real help from my gastroenterologist. I was on my own. At first I didn't care. I meas, how much difference could diet make? I kept falling back into old habits. I had grown accustomed. As a child I hated sweets, but now as an adult I craved them. When my children were diagnosed I first felt victorious. I had known that they had it and I had to fight the doctor to get them tested. But their doctor was different. She set me up with a dietician. Finally I would get answers. That was almost 2 weeks ago I think. It wasn't until my children were at risk that I got serious. I didn't have the will power for myself but I would walk through fire for my kids. I immediately changed everything. All new food. I threw away stuff nobody should be eating, gave away good stuff we couldn't have, and packed away stuff we might be able to have again. All the children could see in their cupboard would be safe food and safe drinks. It was a struggle but we have been following the strict diet for a week now.

And I feel GREAT!! I can't believe it. I have scalp psoriasis. It hasn't itched all week. I just noticed that I hadn't wanted to scratch my head. Before it seemed like a compulsion and I would have open sores and everything. The dermatologist had given me medicine for it but I haven't used it all week. I also lost 5 lbs in 2 days. I am now the same weight as I was 10 years ago. I have a total weight loss of 30 pounds. I would be okay losing another 10 but after that I really need to work at keeping some on. I wouldn't want to lose too much. I like looking healthy and curvy. I also had energy today. It wasn't the sun shine or the warm weather. It was the dextrose. It is straight glucose and I have been missing it my whole life. I felt like a real person today. I did stuff. I even took my kids to the park.... and then played with them instead of watching from a bench. I felt confident and relaxed. I had no anxiety, no depression, no fatigue, and no pain. I still have fibromyalgia. I can feel it telling me I might have over done it today and I should go to bed. But what I feel now is much better than any other night before bed. I even woke up this morning feeling refreshed. That hasn't happened in a long time.

The shopping trip from HELLLLLLLL.

Yes it was that awful. It didn't start out that awful. It actually started out good. I was excited. I was gonna go get some food that was safe and everybody would love it. I felt like supermom saving the day. I went to the health food store to find some safe vitamins. That sucked, took an hour, and I only found one kind that was a pill. So my littles can't take it. So now I have to do some resarch to find sugar-free, gluten-free, artificial color and artificial flavor free chewable kids vitamins. Some of those requirements might have to go.... like the artificial flavor part. I did at least find straight dextrose baking sugar, cell salts and flower essences. Woot!
Next stop was the grocery store. I can't afford grass-fed meat so I settle for the meat counter at Fareway. I am afraid to ask what their meat eats before slaughter. All I know is it is safe for me to eat and affordable. So I loaded up. A whole freezer full of all kinds of stuff. Pork, beef, turkey, chicken, fish. All different kinds and cuts. yummm. Sadly, that was the only stuff I could buy from that store. My search for uncured sugar-free bacon and sausage remains unsolved. Maybe next time i will stop at a butcher too. I still spent 2 hours there.
After that I went to Hy-vee. I know they have a gluten free section. I need rice noodles and safe crackers. Two things I really dont want to try to make myself. Apparently the stuff they use to make noodles is the wrong part of the wheat for me. Same for crackers. I can only tolerate the processed white flour in stuff I make myself. I searched and searched. All the rice noodles had rice bran too. Again, that part of the rice is not tolerated for me. All I could find was Annie's gluten free mac and cheese. At least it tastes good. But i really need to find elbow macaroni and spaghetti noodles made like that too. I am still not even completely sure that I can have all the ingredients but I was depserate for food. I found Unsweetened Almond Milk. I had been looking for a weeks. That was cool. I got organic. non-homogenized, vat pasteurized, whole milk. I found organic butter and whole milk unsweetened yogurt, almond flour, sunflower seeds, almonds, and cashews. Not sure if the cashews will work but i wanted some.
By this time the kids were at a breaking point. Even though we had stopped to potty, I had nursed the baby, we had eaten lunch, and they had taken a nap between stores, they were done.
But i still had to find a snack food for them to take to the church nursery. There are other kids there with allergies and I really needed to find something they could all have. It had to be dairy free, gluten-free, sugar-free, egg-free, peanut-free, oat-free, rye-free, soy-free, corn-free, and couldn't be made with brown rice. I about lost my mind. I was talking out loud to myself. One employee asked me if I needed help finding anything. I replied "yes, my mind, I think I left it on the floor back there." He immediately got on the speaker (for pretend) and started asking if anyone found it. That made me smile, but it did not find my mind. I asked my 3 year old to keep her eyes out for it. She still says she saw it in one of the aisles but it got swept up. I finally found a cracker. Rice almond crackers. But it didn't say on the label if it was white rice flour or brown rice flour. I asked management if they could help me figure it out. I stood there for half an hour (after shopping for almost 3) while they found me a phone number for customer service. Bless their hearts, they were so helpful. I called and found out it was white rice. Totally safe for everybody. Yay! I bought four boxes. My husband says they taste like corn nuts. Kids like them too. Looked at the box again. Made with milk. So now we can eat them but they cant have it at church.

I am never going shopping again. We will all eat dirt.

Friday, April 1, 2011

It all started.....

Ever since I was a kid I have felt like I was different. I don't mean different as in my mom told me I was special. I mean different as in I didn't have a clue what the hell was going on. I felt disconnected from everything, like I was looking through really dirty windows all the time. I felt odd. I got teased alot. They said it was my red hair but I think it was because I acted different. I was withdrawn. I was always tired. I never wanted to do my homework and was getting bad grades. I had a hard time talking to people and I was slow. I moved slowly and carefully. I didn't like fruit and wouldn't eat it. I didn't like anything really and would hardly eat. I didn't feel hungry. I always felt sick to my stomach. I also had moments where I felt crazy. Running around in cricles and saying wierd stuff. Don't ask me what. I blocked that part. My mom was horrified to bring company over though.
When I turned 13 things started changing. I started drinking Mountain Dew and eating candy bars. Mostly because they were cheap and available. That is also the year I started throwing up regularly. I mean, every morning while taking my shower. Every. Morning. I complained to my mom and she took me to the doctor who did some kind of barium xray. I had to drink something nasty. The doctor said the didnt know what was wrong. they suspected ulcers I think. Somehow, some reason it was though I could be Lactose Intolerant. So she bought me lact aid for my milk. but it didnt help. I quit drinking milk. Later that year my Mother got diagnosed with Fibromaylgia.
I did manage to graduate from High School. Barely, but I did it. Got a job and then got married. Right out of High School. I like to gloss over this next bit because it is painful. We got hooked on drugs, he beat me up alot, had a baby, then finally left him when my boy was 6 months old. I had been so physically hurt that it took me a month to walk right again. But I did, I went to college, raised my son, moved on.
My son was always getting in trouble in preschool. Every other week I would get a call from them to leave work and go get him. Eventually he calmed down but I would still get calls at least twice a year. It wasn't something little. It would be because he kicked a boy in the nose and made it bleed. It was always something violent. I was still young. I didn't know it wasn't normal. Eventually, by first grade the school had had enough. They requested I get him tested. They decided he had ADHD and wanted him on meds. I fought that but in the end it was either that or he couldn't be in school. I had to work. I gave in. And for the first 2 years it seemed to help. But then it quit. And every new med they wanted to put him on quit working soon after.
When he was 9 I started seeing my now husband. We added in his daughter. We lived together. Everything seemed to be good. Then i got pregnant. We were ecstatic and so were the kids.
Everything was going good. I breastfed and cloth diapered. I loved being natural. I researched everything. My daughter started throwing up most feedings. She started looking skinny and out of porportion. Not normal out of porportion like normal kids whose heads are to big for their bodies. She looked different even from me son and step daughter. It was the top of her head. it was the right size and everything was too little it seemed. Like she wasn't growing right. I had started her on baby food at 6 months and by 9 months old she had circles under her eyes and was way skinny. The doctor said she was fine for a breastfed baby and gave me anti-acid medication for her. I gave it to her twice. It didnt help. She started refusing everything but the breast. It was then she stopped vomiting all he time. I was told she was fine. I wanted to believe it so I soldiered on. Then I got pregnant again. I had to wean my first daughter. I couldn't take the pain. It was awful. I completely regret not sticking with it. My second daughter wsa born naturally. No meds, not laying down. The most amazing birth I had ever had.
This time I did baby-led weaning. When you let the kid decide what to eat and when. You just offer it to them it hand held pieces and let them play. She never ate anything, just played. She refused to eat fruit or veggies, but she would gnaw the hell out of some steak.  She looks healthier than her sister. She never throws up. And she gained weight better. I started giving her juice in a cup and then it started to change. She started developing circles under her eyes. Her sleep was more erratic, she cried more, had bad diaper rashes, and started refusing all food and drink except breastmilk.
Now my son is complaing of chest pain and says he throws up almost every day. Within an hour after school lunch he is in the nurses office feeling ill. We won;t talk about his bowels on here except to say it wasn't pleasant.
I said enough. I screamed even. I couldn't look past it anymore. We were sick. Something was wrong. Both my parents had just been diagnosed with type 2 diabetes and I knew I was next. I started by taking my son to the doctor.
They dd EKG's. They drew blood. They took urine. They did tests. No answers. I started researching. That is when I heard about food intolerances. I thought it was lactose. After all, hadn't i been told that as a child. I didn't want to poke my children anymore so I made an appt for me to get tested. I had been seen years before for GERD. I had been taking meds for 7 years. I didn't want to medicate the symptoms anymore, I wanted answers. I quit drinking milk again. The GERD went away before I even made it back to the doctor's office. But they sent me home with a fructose, lactose, and bacterial overgrowth breath test kit to do at home. They also scheduled me for an endoscopy to check if I had more damage from the GERD. The endoscopy showed erosive esophagitis which was healing. The celiac came back negative. I was sure the lactose would come back positive and the others negative, but I was wrong. I am not Lactose Intolerant. I still can't drink milk without vomiting and cheese makes me nauseas. But i can eat yogurt. However, the frucotse and bacterial over growth came back positive. I was shocked. I had never even heard of fructose intolerance. I started researching. I had decided i wanted my kids tested before I even made their gastroenterologist appointment.
The doctor didn't believe me, told me I was wrong, but did the test to humor me I guess. She had to call me herself to tell me I was right. My son and older daughter both tested positive for rucotse intolerance. I asked about testing my youngest who is 18 months old. She said she wasn't old enough but since she had symptoms to consider her intolerant as well.
I know there is a difference between Hereditary Fructose Intolerance and Dietary Intolerance. As children we all hated sweets. As we got older we started to crave them. We have signs of both. I am really worried. The doctors want to test for mitochondrial defects since my son and daughter have different fathers. I want them to test for HFI and enzyme deficiencies. I just want an answer as to what exactly we are dealing with.
In the meantime, I plan to keep living the natural life and eating like I have HFI anyway. This has been a struggle. I have never paid this much attention to labels before. There are so many foods we can not eat. Even sucrose makes us feel bad. We are limited to dextrose, stevia, and maltodextrin. We eat dextrose candies every day because they make us feel better. It is the first time I have been able to do house work all day. My son's chest pain went away. My infant's teeth are remineralizing (using cell salts).My 3 year old has been acting better. She still wets the bed and throws tantrums, but is no longer as violent as her brother was. Sometimes the circles under her eyes almost seem to have gone away. I know I am on the right track.
I have decided to start this blog. I feel like I need a place to bitch and moan. To complain about not finding food or stupid doctors who don't believe that there is something wrong for a kid to not gain weight for 6 months.