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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About UCDSurvivor

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  • Gender Female
  • Interests Reading, Research, Writing, Gardening, Playing with Dogs, Searching, redesigning, and creating new recipes for my disorder. Looking for a great software with nutritional database.
  • Location Texas, USA
  1. I just read some of the responses two years later. One from Mymississipi: The Atkins diet ,done correctly, is not a HIGH protein diet---- it is a LOW carb diet. The emphasis is on the LOW carbs--- not the protein. It has been proven -- it is a fact --- that the American diet ( very HIGH in carbs ) is what is making people obese, and contributing in a big way to high cholesterol, high blood pressure, heart disease, type 2 diabetes, high triglycerides, and more. The thought being that high carb diets cause constant high levels of the hormone, insulin , to be floating around in your blood stream, wreacking havoc on your body. The people who are made sick by Atikins diet were probably in poor health to begin with and did not do the diet correctly. A healthy diet consists of LOW carbs, adequate protein, more fiber, fresh vegs, (lots of green leafy ones) some fresh fruits, nuts & seeds, some pure dairy products. And just eating LESS food, period. Yes, there are some people who can't do dairy, can't do gluten, can't do much protein, etc. These are the EXCEPTIONS---- not the norm. Sick people have to MODIFY their diets according to their particular needs.But to trash the Atkins diet and the Southbeach diet , just because some sick people are made sicker by it--- is just not right thinking, in my opinion. Dear Mymississippi, I now am teaching at a medical school in a very well known university. The students enjoy your comment regarding the Atkins diet and its falicy with metabolism. It is a short term attack on your body with A HIGH PROTEIN and LOW CARB and HIGH FAT. So to say it is low carb is an uninformed statement. By the way. Through the new course the medical students have taken ----three women's lives have been saved. One was almost dead in ICU. And guess what---she had been on one of those wonderful low carb diets. TOO MUCH PROTEIN CAN KILL ANYONE. TOO MUCH PROTEIN FOR DAMAGED VILLI CAUSES MALABSORPTION OF YOUR PROTEINS, CARBS, AND LIPIDS, AND ALL OTHER SUPPLEMENTS. FOR SOMEONE WHO IS ON A CELIAC BOARD YOU REALLY NEED SOME MEDICAL EDUCATION!!
  2. Hello,

    I found your old posts on a celiac disease forum,.I was wondering if you went to a GI doctor or to a geneticist for the first ucd tests. My GI doctor sent me to the blood tests you mentioned, but I am not sure if I should fast or not. My doctor doesn't know, either, but she feels we need some proof of ucd before visiting a geneticist. Do you have any suggestion?

    Thank yo...

  3. Thanks love. I will look at compiling all the stuff more succinctly. The research university I am a patient with just contacted me that they may be making a short educational video that includes my saga --to help others with chronic problems have hope and not give up---the answer is out there. I just had to wait until the medical tests and knowledge believed a child without direct treatment could live into adulthood. I think something bigger than me had a say in that.
  4. Say hey, You hit it on the head. I mostly eat plant based proteins. Why? I can eat more food for the bang. Like a half a cup a beans with a half a cup a rice for a meal. Going gluten free and low protein basically turns me in to a vegetarian. However I celebrate some meals with rice or corn noodles, and gluten free corn bread (entire family loves). I also keep a pkg of gluten-free buscuits in freezer to eat with meal or special treat with butter and syrup. My total calories for the day is suppose to be around 1200 to 1300 with the 30 grams of protein. I have some of your symptoms some times. One major problem is the constant migraines and the auras --I awake with them and fight all day. I celebrate the rare day I don't have them. Something somewhere in my metabolic jigsaw puzzle causes them. That and the body aches that are related to protein gout. I drink cherry juice for that. Makes them go away. Hugs
  5. I appreciate the fact you say low carbs. Given that you eat x percent protein, fat, and carbs. The diet does cut the carbs but does increase the amount of protein in a given day. I have the books and the diet plan. My quote of people being sick is from the hospital -- not me -- Except the diet almost killed me. Going to pure protein was a death sentence. To some people carbs are not a bad thing. I have to eat increased carbs and decreased protein. It is a physical requirement of the liver because of the inability to metabolize the protein. That is why our group is bring the awareness to any group that deals with proteins. If after all is said and done you can't get well, then maybe you might need to explore more options with a metobolic specialist. In one year we have located 5 females in one family group that have metabolic issues versus just celiac. They are being tested in Boston. Her family may not be proteins but may end up being proteins and some type of carb. Part of it is genetic for the French Canadians. In the end I am not kicking a protein oriented diet, but if you become ill from it, look at the deeper picture, not just at the food group. When a hospital is becoming concerned that 6 women in one month are ill and all are on the Atkins diet -- there probably is a common thread, no matter if they are doing someing right or wrong --it needs to be identified and fixed so the people ultimately don't become harmed or die. Regretably the diet was killing me. Please note there are new studies being published that the human body has to have a certain amount of cholesterol. Again the factors are maintenance and moderation. But when a part of our body is broken such as genetically with celiac or with a urea cycle disorder this is where we have to explore, manipulate our diet and learn. Ornithine in the liver is part of the traffic cop system that tells the body where the fat is stored. Thus when the body needs extra energy it goes to the so called index pulls extra fat and burns it. This is why eating protein triggers the burning of fat. This is a simplistic explanation that was given by my geneticist/metabolic specialist. When you make no ornithine (as I do not) the body catabolizes on muscles not fat. Eating protein raises the ammonia. Eating protein raises the ammonia in every one. But you just have a good working urea cycle that gets rid of the nitrogen and ammonia that are the "leftovers" when the body burns a unit of energy"
  6. Why?!?

    Does the same feeling happen with you large quanties of other types of protein -- steaks, meat dishes, protein shakes?
  7. My reactions to versed remind me of a short story called the Yellow Wall paper. I would vasilate from total calm to total paranoia. Of course it did not help that my job was to interact with federal officers from the US Treasury. I would be smiling one minute, crying the next, and combative and angry the next. It took 3 weeks to go out of my system. As I said my GI said no one had reactions to Versed. Well she lied, just search the net and find many stories. Later after I had my true diagnosis I went back to her and verbally shredded her to tears. Her ignorance almost killed me and may have possibly put other lives in danger in the past or could in the future. She believed she was god and all knowing. When I showed her she was not, ha! She had told me that a high ammonia reading could have nothing to do with my liver. When it was totally with my liver. As for the liver biopsies. To check for urea cycle disorders, the biopsy is very very special. The enzymes that the doctor is looking for in the tissues can "gas out" very quicky. So when my was done -- they did three punches (one was to double check for wilsons disease even though I kept telling the head of that department I did not have Wilsons, --self diagnosed.). When the biopsy was taken there was a doctor literally waiting to run it to the genetic lab. And when I say run I mean run. THe specimen has to be treated with liquid nitrogen and then examined. The process to find out if a patient has urea cycle disorders via a liver biopsy is not a regular process like other liver biopsies. I had three or four doctors in the little room with me. Yes I was afraid of having three punches. I had had a very bad experience about 10 years before with just one punch. But I had very special Doctor and team do the biopsies. They kept talking to me positively etc. So was not a negative experience. Okay the confusing part about the OTC gene is that there are many mutations. In fact, they are thinking I may have a new type of mutation. But here is general info on the genes: More than 200 mutations in the OTC gene have been identified. A mutated OTC gene may result in an ornithine transcarbamylase enzyme that is shorter than normal or the wrong shape, or may prevent the enzyme from being produced at all. The shape of an enzyme affects its ability to control a chemical reaction. If the ornithine transcarbamylase enzyme is misshapen or missing, it cannot fulfill its role in the urea cycle. Excess nitrogen is not converted to urea for excretion, and ammonia accumulates in the body. Ammonia is toxic, especially to the nervous system, so this accumulation causes neurological problems and other signs and symptoms of ornithine transcarbamylase deficiency. (NIH GOV) What other names do people use for the OTC gene or gene products? MGC129967 MGC129968 OCTD ornithine carbamoyltransferase precursor ornithine transcarbamylase OTC_HUMAN I have information from the genome project but will have to find it or will write one of the UCD research teams. Here is more info on signs and tests: elevated blood ammonia level (blood test that has very specific protocols, must spin and keep on ice. so if some one is to do, lab must know correct protocol. Texas Children's Hospital lab knows protocol. abnormal pattern of blood and urine amino acids Allopurinol urine challenge (24 hour collection) abnormal level of orotic acid in blood or urine Plasma ammonium ↑↑↑ Plasma glutamine ↑↑↑ Plasma alanine ↑↑↑ Plasma citrulline normal Plasma arginine undetectable Urine orotic acid ↑↑↑↑↑ Plasma ATP down Deinitive diagnosis of OTC deficiency is made by laboratory tests, since physical synptoms are very general and common to a large number of disorders. A high level of ammonia in the blood is the hallmark of this disorder and other disorders that affect the urea cycle. In the short term, the levels of two amino acids in the urine (my test was negative for what ever reasons), orotate and citrulline, should distinguish between OTC deficiency and other urea cycle deficiencies. In OTC deficiency, citrulline levels are normal or low, and orotate levels are usually high. In the long term, however, the most definitive diagnosis can be made through DNA analysis, or through a test of OTC activity in a small piece of liver tissue (a biopsy) taken from the patient. You can have false negative results but not false positive results. My initial allopurinol challenge was negative. We were waiting on blood tests to return from Yale at the time. However, I was quite ill. We asked would it hurt to go ahead and treat me with the meds even though not confirmed. We did. Within 48 hours I was new person. But there are struggles over time. Be very carefull about self diagnosis and cutting protein in diet until doctor confirms. If the body is not getting enough protein, it catabolizes on the muscles, including heart. That is the fine line we walk. I have to eat enough protein to avoid catabolizing but not too much where it kicks off the hyperammonia and other major problems. Children have even a more difficult time. Hugs
  8. I will obtain and post the challenge tests for you. They vary for the different disorders. But will provide for the most common OTC. Also will obtain genetic info for you. However, the most important part is doing the liver biopsy so that they know which enzyme you are missing -- that way they know what treatment and amino acid supplements you must have. For example with OTC, I must take L-citrulline and L-Carnitine. In addition I use alternative medications COQ10, active B6, Calcium Magnesium soft gels, glucosimine/chondrotine, EFA, glathione/ATP injections. I also have a group of medications from the doctor for everyday and those that are for as needed. I have never heard of smoking affecting the level of ammonia in body -- extrapolating it does affect the level of oxygen versus nitrogen. Nitrogen affects ammonia. Your life style could be masking another issue. I made mistake. Drug should be Topamax that increases ammonia not toporol. Will fix in post. Sorry, my brain does not work so well sometimes. If it was depakote that you and your son reacted to, that is a big flag that there may be metabolic issues. I am not vegetarian. But living very close to that lifestyle sure helps. Go gluten free. Stay away from meats mostly because protein level is so high that I can't eat much any way. I can eat 30 grams of protein a day which is 10 grams per meal. We have to real a lot of labels and I use a recipe conversion software to help me. It was the Versed during the endo that blew me away. Life was nightmares for three weeks. I was a psychotic nut job. The GI doc did not believe me. I googled but can't find website that had me laughing head off. Writer had some of same reactions I did and some much worse. He had grand mal seizures. Described his inability to do anything at the time. He made lemonade out of lemons through his website. When I had liver biopsy, had to use special medication instead of versed. Am off for a nap. Will provide info later today. Hugs.
  9. Hey UCD here. I am still trying to catch lingo. Who is a DS? I know I have fought intermitant gastroparesis over the years. It was like my whole system would stop. If diet is heavy in dairy -- how much protein is he eating a day? What is body size and weight. Does he like cherry juice (better than prune juice)? Drinking some through out day may help with movement and it detoxes too (pulls out extra uric acid in body that makes you ache). RW Knudsen has product called Just Cherry Juice (Black Cherry). We think tastes good. And it helps keep me moving. My other solution is one I do not opt for a child. I have a beet juice concoction that will work. I have the GERD, Barrett's disease, argumentative stomach and intestines/colon. When really picky I have to take dicyclomine for a week or two then can get off of. If really tough, I use to go to a liquid diet for 3-4 days until food was passing through. I also take enzymes and prevacid now. My doc has me on two previcid each morning. If not the whole system starts to go haywire. My gastroparesis is better since lowered amount of proteins and stay gluten-free and I take my metobolic meds. In fact if I stay on metobolic meds I have no problems because that keeps my system working. Sometimes I just can't get to meds ---------------------------------------------------------
  10. As I stated in the previous note regarding my disorder. My problem is broader than just gluten. I found out that my body cannot assimilate protein very well at all. Here is a quote from Harvard Health Letter and then following are a list of all the symptoms and disorders/diseases associated with the problem of not assimilating protein properly. These are the known ones discussed by patients and doctors within our user groups and what is published. There could be more. It will show you how broad the issue is and how celiac intolerant persons are incorporated. Article: Urea Cycle Disorder May 1, 2007 Digesting protein may be a hidden problem for some, according to the Harvard Health LetterBOSTON
  11. Yes the most severe die, as I referred to my 39 year old friend --she is in very bad shape. Most boys die at birth or by age 5.Females may present any time in their life with mild to severe symptoms. My liver's Urea Cycle only works 5% of the time. To live it should be around 20-25%. I should be worse but between the grace of God and fates as well as me using alternative medicines and solutions I think that is why I am here. The university medical groups cannot publish on the forums or boards to inform groups about the issues with protein. Thus after thinking I was celiac intolerant and learned the issue was more severe, that is why I am letting people know. The two links you quoted provide general information but many of us patients and some doctors now suspect that the women with milder symptoms have been diagnosed as something else. The most common misdiagnosis being food allergies (any thing with protein where patient is eating more protein that the body can assimilate--based on body weight and size), celiac intolerance, fibromyalgia, chronic fatigue, epilepsy, migraines with seizures, personality disorders, sinus problems, general headaches, IBS, constipation, diarrhea, and on and on. As I said before, am putting list together that impacts adults and will post. Basically a metabolic disorder --that is what a urea cycle disorder is, impacts your body at the mitochondria level or basically the cell level. It is only since the started the genome mapping projects that they have learned more about the disorders. Now they are studying epigenomes to learn more. For example Baylor University in Houston has a specialist Dr. Brandan Lee that is studying urea cycle disorders. He sees patients from all over the world. There are several other doctors in the US that are well known. Medication to treat these disorders can range from $4,000 upwards to $15,000 a month. You take the medicine as well as eat a low protein diet. Again, my purpose is to inform, say thank you for being here--celiac recipes (gluten free) kept me alive along with my alternative medicine treatments through the years until I was properly diagnosed. Protein is not my friend. For some of my e-pal friends it may be fats or carbohydrates. They all have to do with the metobolic system. However as far as I know, only protein damages the villi. Have a groovey day!!
  12. Ravenwood, I see where you say misdiagnosed... really all of those are just symptoms of a root problem. Basically I had all that and more. I will find total list of what proteins can do and post. I have not studied carbs and fats as much. I do have some correspondent friends since diagnosed that I talk to. Until the past five or six years doctors believed there were not that many adults that may be living with the Ornithine Transcarbamylase Deficiency (OTC) which is a urea cycle disorder. My belief is that there are people, mostly women out there that are dx'd as celiac intolerant and chronic fatigue/fibromyalgia that may really have some slight problem with the urea cycle and protein assimilation. I am part of a five year study -- they want to find out more about adults. Am one of the oldest living at the moment. Know there are one or two older than me. We both have about the same level of symptoms on a monthly basis. Basically we must control the diet to prevent problems. Continuously eating high protein meals could cause blood serum levels of ammonia in our body to rise (hyperammonemia). That is toxic to the brain and central nervous system. It can and will kill you if not treated. You slip into coma and are gone. For babies they believe this is one of the causes of sudden infant crib death. I am working to create awareness. Celiac people know how important diet is. Some people don't. I have one e-pen pal that is a full blown gene damaged friend. She has brain damage with her UCD. She is an adult but has the ulcers, gerd, GI problems --can eat very little foods without problems. She is having a problem taking the medicines we need to take --they tear your stomach up. She has a mickey button to put food and medicine in. She is 39. She is limited to about 30 grams of protein a day. Before DX I was having protein smoothies in morning from Jamba Juice (150 grams), eating light salad with can of chicken or tuna (30 grams), dinner my husband would fix (100), plus 4-5 cafe lattes from Star Bucks (100). That is 380 grams of protein -- when my body could barely handle 30 grams with medicine. No wonder I was off the wall with migraines with auras, migraines with seizures, --you name it I had it. I would fall asleep for days at a time. So when I went celiac free I thought I really had found the answer. What I had done was cut proteins and was letting the villi (sp?) heal some. A urea cycle disorder also damages the villi. Guess because both are protein related. I had been constipated all my life. Now rather regular. But can't lose weight because of the amino acid I am missing. The trip has been interesting. Must stay gluten free and low protein to feel rather well. If I eat gluten I become ill. From your tag it looks like you have had the gentic studies. I have had the endoscopy and liver biopsies for the celiac and urea cycle disorders. At some point I think they will do an entire DNA workup. I as to have done but Yale lost my blood. So a new lab will do it in home town. Will stop blathering. Have a good day.
  13. Rat Poison Verses Gluten

    Neesee, UCDSurvivor here. I went pretty far down before I found out how bad gluten and protein are. And because I found out I do not metabolize protein because my liver fails to make a certain amino acid -- gluten and more basic protein is a poison to me. But guess what -- the darn little buggers affect my personality too. I don't know about the rest of you reading this link, but I can be very terse, combative, argumentative online and not be aware I am doing it. When I found out that eating too much breads or meats caused these personality disorders I was devistated. Totally. Nessee I take the toporol. But I wonder if more is at the root cause. Have you had all the genetic testing for the celiac? Those little proteins can cause mood swings and such that you are not aware of. So I will send you mental hugs. I have done much of the same myself. I however had to go further than just celiac gluten free. Now am on low protein diet along with amino supplements and other things. Am curious, Neesee has anyone ever checked your ammonia levels when blood pressure is spiking? Are there any other strange problems you are having? Hang in there sweetie. UCD Survivor.
  14. Just some suggestions as I made my trek for my diagnosis. My problem is more complicated that just gluten. I cannot assimilate any and all protein correctly -- including gluten. This is a urea cycle disorder. As part of this I also have problems with sugars, molds, yeasts and such. Some of your food list indicates that may be an issue. The lemon cleansing diet is wonderful for your liver. Try looking up the yeast free references and information regarding a Liver Cleansing Diet (it is really a great book or website to read even if you do not do the regime.) If after taking food challenges and such you still don't have answers. If you live in a town big enough, try a metobolic specialist. There are over 41 different disorders that affect the way we assimilate proteins, carbohydrates, and fats. Because I don't assimilate protein well, it leaves me with no energy and memory loss. I have to take amino supplements to help the gap. Good luck and will be thinking of you.
  15. Please Note: I meant to say MYCeliac Intolerance etc. is part of UCD. Is not the same for everyone. I have had all the symptoms related to celiac disease/intolerant since I was a baby. Gastro, Neurological, name it, I have had it or have it. Endometriosis -- 8 miscarriages, throwing up after eating -- doctors telling mom it was food allergies; mom would remove that food but other symptoms would be there too. Have restless legs, migraines (several types with full blown auroras), tinntinitis (sp?), naseau, sleepies, sleep apnea, allergic reactions, sores on skin with white discharge (not pus). Have broken both ankles, feet, lots of toes, and one arm. Memory loss that would come and go. Tested very high IQ for years but started losing math concepts. GI problems. Major constipation, severe spasms. Meat made me ill. So did breads. But I could not loose weight no matter what I tried. Every time I exercised I became ill. At first doctors did not believe me. Then it baffled them. I was diagnosed with chronic fatigue and fibromyalgia. I knew they were only symptoms not the root cause. I found all the celiac information. I tried going gluten free. Well that helped some. Even my employees said there was an improvement in my personality. I could not figure out why. I paid for the blood tests for Celiac my self. It was negative. So I went back to eating gluten and making myself sick. Convinced doctor to do the Upper GI and biopsies. It was negative except for barrett's disease. Finding that out left me totally distraught. But I went back to gluten free -- some symptoms improved. Yet my eyes would roll back in head. I would go away when people were speaking. Could fall asleep sitting at my desk. I was seeing a neurologist, internist, GI specialist, infectious/chronic disease specialist. I had weird liver readings. The doctors said well I was just glucose intolerant not the disease. I said naw, there was more. Found website called wrong diagnosis. Researched and linked all my symptoms and diagnosis over the past 20 years and came up with a possible answer. I had something totally overlooked. And then realized that I was luck to be a live maybe. Went to neurologist and had my ammonia level taken at that point it was well over 180 (normal is 30), while over 200 can be comatose. We started the only medications we knew of at the time. I located a doctor in my city. The only specialist with Urea Cycle Disorders. Ultimately I have been diagnosed with Ornithine Transcarbamylase Dificiency, a Urea Cycle Disorder. Even though my liver only operates a very low percentage, threw the grace of God I am still here. I think one of the reasons is to let people know about this disorder especially women. My disorder means I cannot assimilate protein correctly. Voila--gluten is a protein. Just as in the Celiac disease process, the Urea Cycle Disorders also damage the villi (sp?). So going gluten free automatically cut back on the protein bombarding my system. I stumbled onto self help. In fact part of my treatment requires taking amino acids --some I had already found were making me feel better. I had spent thousands of dollars at Whole Foods buying supplements keeping me alive. And over time I did not realize I had been subconciously weaning various types of protein from my diet. Except I had begun drinking power smoothies every morning and that was contributing to my overall ill health. My point is for those that think they may be just intolerant because the basic tests are negative. It may be even deeper than that. It may be ALL protein not just gluten. The materials for UCD infer that most are found at birth. Males tend to die young if they have it. Females can have it and never become symptomatic or they may have problems appear any time in life. There are various tests. I see a metobolic, genetic, pediatrician at age 51. Go figure. Doctors that treat adults have no experience with the disorder. So for those that have gone gluten free and are still having problems --try looking at your protein level intake also. Don't try to go protein free -- your body will catabolize and destroy muscles including heart. I have to be very careful. Low protein diets range around 30 grams for adults. So you see the atkins, southbeach and other low carb diets don't and can't work. Several years before being diagnosed, I had tried the Atkins diet with a friend. I ended up in the hospital quite ill and did not know why. Now I do. The sad thing is, the nurse said they had six women in the past month that had been hospitalized and had been on that diet. It tells me that even though some of us can tolerate these mega protein diets, others it will and can kill. So for the gluten free that provide recipes and such --thank you for keeping me alive. I am gluten intolerant. I am also protein intolerant. I must stay on special medications the rest of my life. For those who still are searching, look at the protein. PS this is a genetic disorder most of the time. The side of the family from which I obtained from --all are dead. I am fighting to staying alive. And Gluten Free is one of the Golden Keys!!!!