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I am busy packing to leave town. We are heading south to LA, mainly to see the King Tut exhibit at the Los Angeles County Museum of Art. We are all excited about it, but I still get a bit nervous when we travel. You know...the food issue. We try to stick to safe restaurants, and we take snacks with us EVERYWHERE, but what is a supposedly safe restaurant has an uninformed chef, or server. They could always mess up and we'd end up sick on vacation. I try to be very careful, but accidents happen.We are only in LA for a few days and then we have to come home for dentist appointments for the kids. I would have rescheduled, but it is a new dentist for us and it took two months to get the appointments. I mean, gosh, some of us celaic/gluten intolerant people have horrible teeth problems and need to have them dealt with or they get worse. My oldest has a spacer in because two of his permenant teeth took over a year to grow in after the baby teeth fell out and now that one of the teeth is growing it needs to be removed. In fact the previous dentist was going to remove it last May and now it is way past due. If I hadn't found out that the previous dentist was ripping off us and the insurance (by doing some unneccesary work and charging for cleanings that were never done!) then I would have no p[roblem taking him back there, but as it stands it ain't gonna happen. So the new dentist...After that we head to the Monterey Bay. I love it there. I was born and raised there and it is always fun to go back. But it is only for two days and my nieces b-day party. I would love to have more time to visit. We haven't had much luck in the eating out department where my sister lives, but we'll find something. The food she is serving at the party isn't gluten-free (except the fruit, veggies and ice cream) but she is having the party at 2:00pm so we have time to eat lunch before hand. She cares about us and knows about our diet, but she was strapped for time (she works too much) and ordered sandwich platters from Costco. She actually probably needs to be gluten-free. She knows it, but gave up trying to get her doctors to test her for it, since she says there is no way she would stick to the diet anyhow. Too bad. I would live for her to know what being healthy is like. She has so many symptoms. We get to be home for one day, but only to pack for camping. We are going to Yosemite. Another of my favorite California locations. We used to camp there a couple times a year, but the past 7 years we have only been there twice. This is also our first time since going gluten-free. I am so happy with the food service staff there already and we haven't even got there yet. I sent an email to the food service company that handles the park (and many other places) and they got back to me right away that they forwarded my request for gluten-free food to the staff at the park. The next day a guy called me to discuss our menu options for the various places to eat. I was in the middle of a bible study group, so he called back the next day. He told me they can provide us with gluten-free meals at any of the restaurants that we want to eat at. It helps them to be prepared if they know you are coming, and also if you pick which places you are going to eat at on any given day. That way they can make sure there are plenty of gluten-free choices available to you. So I need to call them a day or two before we go and tell them where we will eat the first day. They will have someone there to go over our choices in person. I think it helps that so many foreigners travel to the national parks. So many europeans are also gluten free and so they have learned how to handle the diet. For this I am grateful. One of my other celiac friends went there last June for 4 days and said they served her Tinkyada pasta, steamed fish, etc. and her son got to eat a gluten-free bunless hot dog and fries, which of course made him very happy. They are going back at the end of August! I hope our trip is as good, in regards to the food. The scenery is always excellent!Well I am off. I love to travel and I am not going to let gluten get in my way.
I don't remember much about my life before I was 3 years old. My mom passed away almost 9 years ago and my dad wasn't around much when I was a baby, so I have no one to ask if I had problems then. The first health problems I remember happened when I was 4 years old.I encountered a few traumatic events as a child. I know that any traumatic event can trigger Celiac, and I have wondered if that is what started it. When I was 3 my mom lost custody of my sister and I. We had been living in Missouri and we moved back to California with my dad and my step-mom. My step-mom was an alcoholic and would drink all day while my dad was at work. She would make us oatmeal for breakfast and expect us to eat it plain (no sugar or milk). If we didn't eat it, then she would leave it on the table and make us have it for lunch. If we didn't eat it then she would try to serve it to us for dinner. My dad would get mad at her and make us dinner though. My dad had a temper though and he got mad one day when we didn't clean up our toys. He dumped over all the shelves of toys in the playroom and then told us to clean them up. There was one day when I decided to go for a ride in the back yard on my tricycle. I was going around the concrete when I noticed the back gate was opened. So I rode my bike out the gate and I remember riding past the flower bushes, the ocean breeze blowing in my hair, I was a carefree 3 year old riding her bike around the block. By the time I got back my dad was about ready to beat me to death! My dad broke my tricycle, and got the spanking of my life. I think that was the last brave thing I did in my entire childhood.I cried alot. I was afraid of my father. If he raised his voice I would break down in tears. I was painfully shy and timid. My dad put us in daycare to get us away from our step-mom. I spent everyday in the corner crying. I didn't play with anyone. I just cried all the time. It wasn't all bad. I have good memories too, but it was very hard to deal with and my mom was so very far away and I never knew if I would ever see her again. My step-mom got put in rehab, and my mom got custody back. We moved back to Missouri and life went back to normal. I went to ballet and gymnastics and started preschool. This time I didn't cry everyday.Then I was 4 and my big sister was 6. We had gone to a church meeting that night and then stopped by the local grocery store. My mom was shopping and my sister and I asked if we could get a candy. She said yes and we skipped off down the aisle towards the front of the store where the candy stand was. What we didn't know was that at that moment the store was being robbed and at least one of the robbers had a shot gun. When my sister and I came skipping out of the aisle, the gunman got freaked and shot the gun in the air and someone yelled, get those kids out of here! I remember my sister and I falling back into the aisle and my mom running towards us. We were huddled down on the ground near some canned goods. After that I don't remember much until we got home. The pastor of our church came out to speak to my mom and I was crawling on the floor. All of a sudden I couldn't move. My mom asked me to get up off the floor, but I couldn't. My legs hurt so bad that I could not stand up. I spent the next week in the hospital. They ran tests, they gave me shots, they forced me to stand up everyday on a scale. They told me it was to weigh me, but I heard them talking and it was because they hadn't found anything wrong with me and they thought it was all in my head.I cried every night because they wouldn't let my mom stay in the hospital with me. After a week it still hurt to walk, but not as bad and they let me go home. I got a lot of tummy aches and cried a lot. I couldn't do ballet and gymnastics anymore because my hip joints hurt too much. They still couldn't find anything wrong with me.When I was 6 we moved back to California. We packed all our belongings into an old school bus (with the seats removed) and spent 2 weeks traveling half-way acrossed the country. It was fun and we didn't have to go to school. I didn't know why we were leaving, and wouldn't find out until I was an adult and asked my mom. It wasn't for any reason I had imagined.We moved in with my grandfather in an old farmhouse. Although it wasn't an ideal place (there were mice in the house, and my mom would shake out the blankets when we went to bed, but the mice would crawl on us while we were asleep) we had a good time there. My grandpa was a very funny guy and he had all of us laughing all the time. We played in the tree house, and in the junkyard, and had a good time. My grandpa even pretended to be Santa Claus that Christmas and called us on the phone from the other room. He really had a convinced it was Santa! We played on his organ and listened to 8-track country songs and watched the Muppets on TV. Life was good. I don't remember feeling sick at all for that year that we lived there.Then we moved again. My mom had met this guy at the real estate office that rented her a house. By the next fall they were married. Life seemed good for a while, but then my new step-father started treating us differently. He now had his own children with my mom, and we weren't as good as his precious boys. He and my sister fought a lot. My mom was tired a lot and had a lot of health problems herself. She is the one I believe I got the Celiac gene from. She was always in and out of the hospital.I dropped out of school during my 6th grade year. We had been going to a private christian school, but the three of us kids that were there were having a lot of problems. I was blacking out at school (literally), and my brother was having a lot of bloody noses. None of us were happy there and I always felt sick to my stomach. One morning my mom said if we hated it that much we didn't have to go back. she would homeschool us. But my mom was really too sick. I mostly just read alot, anything from childrens books to encyclopedias. I wanted to go back to public school. My sister was going to the high school and my mom agreed to let me go to the Jr. high. I should have been 8th grade, but since I hadn't gone to 7th they were going to hold me back. My mom didn't like that since she felt I was too smart to be held back. So she took me over to the high schhol and they said if I did independant studies for one more year then I could take the high school placement exams and enter as a freshman. So I did. But I was stressed out all the time. I hated being home because I had to play "little mommy" to my 4 little brother. I always felt sick to my stomach and had a headache. Some days I didn't even want to get out of bed. When I was 14 I thought about suicide a lot. One day I had a knife and I was going to use it, but my mom was in the hospital again and my baby brother started crying. I couldn't leave him alone like that so I didn't. We hadn't been to church in years. I did go to high school for my freshman year, sort of. I was absent 73% of the second semester and failed 5 out of 6 classes (I got a D in home economics!), mostly because I was absent so much I couldn't make up all the homework and tests. I had pneumonia, bronchitis, tonsilitis all the time, the stomach flu all the time...I thought it was just all the stress. My mom had separated from my step father, and they fought all the time. He threatened suicide and to take all his kids with him (he planned to crash his car or drive over a cliff or something). We had the cops at our house far too many times. Someone threw a rock in our front window, missing my head by inches and the only reason the glass didn't cut me was because we had rubber lined curtains! So when I turned 15 I asked my mom to let me move in with my father. She had remarried again and was addicted to prescription drugs. I needed out of there, and felt guilty for leaving all my brothers, but I needed to take care of myself. It was the first time I had stood up for myself since the tricycle ride around the block when I was 3! Before that I was so shy I couldn't even go to the counter and ask for ketchup at McDonald's! (to be continued)
Well I think I managed to stay gluten-free at the church nusery today. Not always possible with all the kiddies eating their crackers and cookies...I came home, changed my crumb/saliva smeared clothes and scrubbed my hands. I made sure I didn't eat anything while I was there and didn't touch my mounth, but I still get nervous. I am glad it is only once a month. I am the Nursery Director at our church and when I started the job three years ago I was not gluten-free. Soon I will be gett5ing a replacement for me and will be able to teach in another age group, one that won't smear cookie/cracker crumbs all over me! Since my kids are in the older kids class they usually have gluten-free snacks (like Lay's chips single packs, popcorn, popcicles) I would like that better. Soon. It will be a relief. It is hard enough to stay gluten-free when shopping for convenience foods and eating out. I don't like having to worry about teaching sunday school at church.I came home and treated myself to a big piece of gluten-free angel food cake. My husband (who unexpectedly got the day off today) BBQ'ed steaks for dinner. Yum. It was actually a really nice day. I spent the afternoon reading a book, since I didn't have to think about dinner. The kid played and I just focused on relaxing. I don't get many days like this.
Okay the title pretty much says it all. I am a follower of the Lord Jesus Christ and I am not ashamed to admit that. Other than saying "God bless" at the end of almost each one of my posts, I try to keep my religious preferences off of the board. Not because I think they don't apply, but because I don't feel it is a place to discuss such issues. There are many people on the board from all walks of life, from all over the world and from many different religious (or non-religious) back-grounds. I don't feel it is my place to chase anyone off of the board with my religious beliefs, and despite our best intenstions discussing religion would do just that.Now that being said I do have to also say that my faith in Jesus Christ DOES affect how I live my life and it makes a great deal of difference in how I see myself and my gluten free lifestyle. I prayed for many years for God to show me what was wrong with me. I felt like I was always sick and I often thought I was dying. When I realised gluten was causing me to feel like this, it was as if my whole life opened up infront of me and I was able to live again. To me this has been an answer to all my prayers and I am grateful to God for showing me the answer. This does not mean that I am always happy about having to have a special diet. There are always times when it gets frustrating and difficult to deal with, but one thing I won't do is blame God for "giving" me this disease, or be angry about having it. It could have been a lot worse. I could have ended up having some terminal disease that would have either killed me or put me on tons of pills for many years only to die a long agonizing death. Well that still might happen anyhow, , none of us can see the future, but I think it would have happened a lot sooner if I never had found the answer.I try to live each day showing God's love to others. I see the message board here as a way of doing just that. If I can help others to feel better, then I am doing something for God. We are supposed to reach out to others in need, most religions teach this, and Christianity certainly does. We all help each other here and that is fellowship. We as people were never meant to suffer alone in anything we do, and most of us here on this message board felt utterly and completely alone when we recieved our diagnosis (whether you are doctor diagnosied or self-diagnosed makes little difference). We felt alone until we came here and found so many others that have gone through the same thing (or are going through it with us). Here we are like one big Celiac family. I go to church each week and I love my church family, but they don't understand what I am going through. God does though. I believe that he brought me to this message board, for my benefit and also so I could help others. I do this for His benefit and His glory. That is how I live my life. For the glory of God.I am not perfect. None of us are, but without God as the center of my life I do not think I would be able to handle this life with the ease that it appears that I do (especially being a family of 5, 4 of which are gluten free). My life is not easy, but to others it appears so. When they find out what I, or my husband, or my children have gone through with our health issues they are usually amazed that we are all doing so well. I can only say that it is God. My husband has an illness that could kill him if he doesn't take the medication, and will most likely never go away. Thank God for the insurance we have that pays the $1200 a month (minus our $15 deductible) medication! My son has TWO genetic disorders (gluten intolerance and Familial Mediterranean Fever) as well as asthma, migraines, nasal polyps, allergies to most antibiotics and possibly an allergy to asprin and salicylates. But Praise God, none of them are life threatening, most of them can be helped by medication and/or dietary avoidance. Only one requires surgery periodically. My children are all healthy now that we have figured out what was making them have growth problems and other health problems. That is wonderful to me. It helps me to be able to have a positive attitude in regards to the diet. It also allows me to pass that positive attitude down to my children. They are very knowledgable about the diet and they are able to hold their own when they are at school, church, VBS, and friends houses. They know what they can have and what they need to avoid. They will remind others about it when they are given food they cannot eat. To me this is another answer to prayer. I do not want to have to worry about my kids all the time when they aren't with me. I do not want to always hover over them and not give them space to grow. God helps me with that. He watches over them when I am not there, and I get to hear about it from their teachers when they tell me how "Hannah let us know when we accidentally put an Oreo on her plate. She asked for a new plate and went and got her gluten free oreos from her box". Well Prasie God again. She was only 5 when that happened. I couldn't have been more proud, or more thankful to God. She would have gotten very sick if she had eaten that oreo! I am thankful to God that he gave my oldest one of the best friends he has ever had. His friend does not need to be gluten free (as far as we know) but he loves my sons gluten-free foods and is always trying to steal his "goodies". He begs his parents to let him go on the gluten-free diet! To me and my son it is funny, but inside I am thanking God again for giving him this wonderful boost. You see my oldest had the hardest time dealing with the diet. He was very angry about it at first. He didn't like to be the odd guy at school. He wasn't happy about not being able to have all the good stuff at the store. It was also hard at first because we were all dairy free. But wouldn't you know it, his friend is now addicted to the Blue Diamond Chocolate Almond Breeze! In fact my son wants to buy his friend a case of it for his birthday! And also give him some gluten free chocolate mint protein bars! Every time his friend raves about the food my son doesn't feel so bad about the diet. He has made such a turn around from when we first started the diet. My son recently went to Vacation Bible School. He is 6th grade now, so he couldn't go to the night time one with his brother and sister unless he was a helper. He couldn't be a helper unless he went to the Youth group VBS at 8:30am! When the leader said they were serving breakfast and asked if he could bring his own sack breakfast, he replied "Sure, no problem". He was so excited to go, even though it meant that he would have to bring a sack breakfast! all the other kids had donuts, cinnamon rolls, danish, some egg pancake thing baked in the oven and stuff like that. He happily got up at 8am and helped me pack his breakfast. He didn't care that he was different. He was happy to help me make cinnamon roll muffins, and he was excited to pick out things he liked to eat. He had a blast! I never want my kids to feel like they have to be excluded just because they have to eat different food. God helps me everyday to be prepared. That is the key to a successful gluten-free life, preparedness. That and a good kitchenaide mixer.
Here is a list of symptoms associated with celiac disease that I put together to give to my doctor. I would like to know how many of the symptoms any of you have ( or had in the past if you a gluten-free now). I have 32 symptoms off this list, many of which taken separately could have been something else, but when you look at them together you can tell there is something really wrong! If you have anything to add to this list that would be great. Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)Inanition (exhaustion, as from lack of nourishment)DepressionFatigue (often chronic)IrritabilityFuzzy-mindedness after gluten ingestionDental enamel defects (lots of dental cavities due to weak enamel)General malnutrition with or without weightlossAny problem associated with vitamin deficienciesDiarrheaConstipationLactose intoleranceFlatulenceAnorexiaNauseaVomitingBurning sensation in the throatAbdominal pain and bloatingBorborygmi (audible bowel sounds)Abdominal distentionSteatorrhea (fatty stools that float rather than sink)Foul smelling stoolsBulky, greasy stoolsAnemia (iron deficiency)Hemorrhagic diathesis (bleeding disorder)Osteoporosis/osteopenia (bone loss or thinning)Bone pain (especially nocturnal)White flecks on fingernailsShort stature (due to slow growth)ArthritisRheumatoid arthritisArthralgia (pain in the joints)Tetany (spasms and twitching of the muscles)Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)Amenorrhea (absence of menstrual bleeding)Delayed pubertyInfertilityImpotenceCheilosis (inflammation, cracking and dryness of the lips)*Angular cheilosis (specifically cracking in the corners of the lips)Glossitis (swollen tongue)Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)Edema (accumulation of serum-like fluid in the body tissues)Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)Selective IgA deficiencySeizures, with or without occipital calcificationHepatitis (inflammation of the liver, may be acute or chronic)Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)Liver diseaseXerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)Night blindness (inability to see well in dim light)Thyroid diseaseUnexplained neuropathic illnesses, including ataxia and peripheral neuropathy*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)DementiaDiabetes mellitus type 1Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)Collagen disordersDown syndromeIgA neuropathyFibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)Hyposplenism, with atrophy of the spleen (underactive spleen)Pancreatitis (inflammation of the pancreas)Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)Coagulopathy (blood clotting disorder)Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)In children:Failure to thriveIrritabilityPalenessFretfulnessInability to concentrateEmotional withdrawal or excessive dependenceNauseaPale, malodorous, bulky stoolsFrequent, foamy diarrheaWasted buttocksAnorexiaMalnutrition:*With protuberant abdomen (with or without painful bloating)*Muscle wasting of buttocks, thighs, and proximal arms*With or without diarrhea(as well as any number of the above diseases and disorders)Additional information:Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease. (In fact it is starting to be recognised that this is a VERY common symptom! There seem to be at least as many overweight Celiacs as there are underweight Celiacs.)
Okay, I've never done this before, but figured it would be a great outlet for me to be able to talk about all the little things that come up when no one is around to chat with.I am still recovering from an incident that occurred Friday, two weeks ago. I am on the tail end of the recovery from a gluten incident and the irritable intestines are getting back to normal. My standard reaction is 2-4 days of pain, gas, bloating and diarrhea and exhaustion, sometimes with a DH rash. That is followed a few days later by constipation, usually for about 2-4 more days and the exhaustion sticks around for about 2 weeks. I also am not able to sleep well. My whole sleep pattern is messed up and that just adds to how tired I feel. I hate it, but it is my own stupid fault for not being more careful. Here is what happened. I had a doctors appointment out of town. I was going to take the kids with me and go without my husband, but he insisted that he wanted to go along. Then he was late getting home from work. My appointment was at 2:45 and the doctor's office is 45 minutes away. My husband got home at 2:15 and had to shower really quick. So we were already late when he got in the shower. He asked me to mix his protein shake for him, since he was hungry and wasn't going to have time to eat. So I did. It was a new brand that he started using and I hadn't read the label. I wasn't going to eat it, so why should I read the label. It didn't even dawn on me that it would be a good idea. I sniffed the powder when I opened the package and it smelled DISGUSTING. I can't believe he drinks two of those a day! So I start mixing it and I'm trying to hurry. I mix it with some water, then open the cup to add ice. I toss in a few ice cubes and some of the mix dripped down on my hand. I put the lid back on and without even thinking I licked the spill off my hand. I swear it was only a few seconds and my brain started working. Here is my train of thought: "man, this stuff tastes nasty". "tastes?!?" (picture me spitting into the sink at this point and washing my mouth out, oops, too late I already swallowed it) "what the heck did I just do?" "I wonder what is in this?"So I grab the package and I swear the first ingredient in the mix is a carbohydrate complex that is made from barley, oats and oat bran! Man, I was so mad at myself. I walked out to the car with the shake and told my husband what I did. My husband hadn't even read the ingredients and didn't know it had gluten in it. Now he won't let me mix his shakes anymore. He is worried I'll make myself sick again. The next day I went to a birthday party (only had fresh fruit & veggies and a soda). I went swimming and I was fine, so I thought that maybe I was going to luck out. No such luck. That night I had a bad stomachache, gas and bloating something terrrible. I slept so poorly that the next day on Sunday I was not able to get up early for Sunday School (Thank God it wasn't my turn to teach it!), and by the time we left for the church service my stomach was rumbling something awful. I was back and forth to the bathroom 4 times during the first hour, and it was all I could do to force myself to stay there until the service was over. I practically flew home. I think the delayed reaction (which for me and wheat gluten is usually 12-24 hours) is because it was barley and oats. I hardly ever had barley before, not whole barley that is. Occasionally barley malt mixed in other foods. And none since going gluten-free, unless some of the syrups I've had accidently had it in there. It took almost 36-48 hours for the full effect and that seemed like a long time for me. But since that is the only thing I had that contained gluten it had to be what caused it. On Wednesday I was still feeling bad and I brought it up in our Bible Study group. My husband was shocked to find out that I still felt bad. I think this was the first time that he actually listened when I said that one gluten incident hurts me for at least 2 weeks. I am thankful that he finally learned that. It already has helped tremendously in his keeping the gluten out of the kitchen/eating areas. He is more careful with the cups he mixes his gluten shakes in too!