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darlindeb25 last won the day on July 14 2013

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About darlindeb25

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    I love having new friends that can identify with me--I like talking to people who know what i am and have gone through and who can also share their trials with this disease with me and whom I can share mine with--my sister is also celiac, as is my father---anyone out there wanting to talk with me, feel free to email me anytime--include in the subject line that its about celiacs--I dont open just anything--thank you, Deb
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  1. If gluten free alone doesn't help, you might try eliminating dairy, if you haven't already. I have slept much better since dairy free....and if I indulge and have cheese on pizza, my sleep suffers terribly.

    Another just like me!!!

    Yes, of course vitamin and mineral deficiencies can cause insomnia, along with many issues. I have been taking Vit D for nearly 1 yr now, I do finally have my levels up to a more doable level, yet, the insomnia didn't go until my dairy was gone. Low levels of iron can cause insomnia too, as can low levels of Vit B12.

  2. I only really eat the junk foods because A, they taste amazing, and B, without them I would not be getting enough calories.

    Believe it or not, the junk food is probably part of the problem. You don't need them for the calories, you want them, there is a difference. You like them, and sometimes we justify eating something like this by saying we need it.

    You can eat fresh fruit, banana's and grapes can add calories, much better calories than junk food. Junk food is empty calories, they are not good calories.

    Do you go to bed at the same time every day, wake up at the same time every morning? Do you exercise at night, if so, switch to mornings. My sleep doc told me to keep the lights very bright until just before bedtime, then to dim them. Do you like to read? Could you read before bed, it's relaxing. Have you tried melatonin? My sleep doc first gave me Lunesta, which didn't work, then he gave me Sonata, which also doesn't work, and then I tried melatonin..I take 6 mg every night.

    Yes, they do say warm milk before bed helps some, yet if you are intolerant of something, the rules change. I tested this theory, after being off dairy for 5 or 6 weeks, I tried it again, and the insomnia did come back. Believe me, I would never have believed dairy could do this, without living the situation.

    Usually, a person with insomnia has a mind that wont rest. I still have this problem at times...depending on the stress during the day. So, try going to bed and rising at the same time every day..this is essential for a person with sleep issues. Research circadian sleep:


    Ask your doctor about a sleep study. Insomnia is a symptom of sleep apnea. When you sleep, do you sometimes wake in a panic, maybe thinking you had a bad dream? This is another symptom of sleep apnea. Many people have this problem, and never knew it. I was shocked when the doctor wanted me tested for sleep apnea, and he was correct.

  3. What was your B12 level...the normal range is 200-1000...anything below 500 is too low, even if the doctor didn't tell you it is.

    Yes, it could be neuropathy. Neuropathy can be text book, or it can be random. We all have different symptoms, and the same symptoms. Tingly, hot spots, cold spots, feelings of bugs crawling on your leg, numbness, burning...there are so many symptoms.

  4. We are all individuals, and can't judge how quickly we will feel better by someone else. Feeling much better in one week is great. The tireness may not pass until you build up your vitamin loss caused by the gluten. My tireness didn't go away, several years later I was diagnosed with sleep apnea, and now have a CPAP machine to sleep with every night. Give yourself time, and try to concentrate on the things that are better...keep up the good work. ;)

  5. Not everyone gets completely better on a gluten free diet. Moi included. My insides still freak sometimes, and it has nothing to do with gluten.

    Don't get me wrong, I have never gotten "completely" better. I have just recently realized how I was being glutened, and by "gluten free" labeled foods. I have dealt with health issues for years, at least 30 now. I have terrible headaches all the time, headaches that most people would not even get out of bed with, and I still go to work.

    I'm just saying, celiac is not an excuse to get out of jury duty, not if you are taking care of yourself, and being ever vigilant with what you eat.

  6. One jury I was called for had a man stand up and say he couldn't serve because he had Crohn's. First he had to explain why this was a problem in front of the whole room of people. He was visibly uncomfortable doing this and the judge just said he felt he could accomodate him. I felt for him. Then they sent us on a break and then home as they had reached a plea agreement.

    Even with crohn's, if you are in a remission, there is no reason you can't serve. Celiac is not a debilitating disease as long as you go gluten free like you are suppose too. I am not celiac, but I am gluten intolerant, and was every bit as sick as anyone whith celiac or gluten intolerance...I stay away from gluten, I work full time, and never miss work. I also have been called for jury duty 3 times, and never tried to get out of it.

  7. And yes, I hate it that she is trying to discount my opinion, just because she's getting a "formal education" and all I have is personal experience and the web.

    Oh yeah, this is true of doctors too. Nothing is better than personal experience, and often times they forget that we are not all text book examples. Doctors are getting better at thinking about gluten as the problem, but they still have a long ways to go. They need to listen to the patient, listen to what they are saying. Same thing for the dieticians...some of them do not listen either. I have many, many intolerances, although, now I am beginning to think that some of my intolerances are caused by cross contamination of products...any ways, a doctor listened to me explain what I can't eat, and then told me I had to set up appts with her dietician, so she could teach me to eat properly. :angry: She wasn't listening to me at all, just hearing what I do not eat, but not why.

    Much of gluten intolerance is self learning. Trial and error, and you will figure it out.

  8. The way I read the statement the dietician made about coeliac is this. Coeliac Disease is a condition where gluten actually damages the villi of the small intestine, increasing significantly the risks of several types of cancers and so on. Gluten intolerance is the body negatively demonstrating a reaction to gluten. The symptoms can be very similar, if not the same in some people, so it makes sense to avoid gluten altogether in both cases in order to feel better. But gluten intolerance doesn't cause any actual physical damage to the body, just makes you feel like crap with all the symptoms.

    Your doctor is wrong, very wrong. As momyxyz says, non celiac gluten intolerance is as damaging, well, actually more damaging to the body than celiac is. Celiac is just one autoimmune condition that gluten intolerance can cause, but there are many other autoimmune diseases caused by gluten intolerance. Gluten intolerance causes autoimmune diseases such as Sjogrens, Hypothyroidism, Neuropathies, B12 difficiencies, ADHD and ADD, MS, just to start. Non-celiac gluten intolerance can inflict real damage to your body, not just the villi like celiac does. Celiac is just the tip of the iceberg, gluten intolerance is the iceberg.

    How does a gluten intolerant person NOT have the "Celiac specific response"?
    A gluten intolerant person doesn't have to have celiac, but, a celiac has to have gluten intolerance. It's similiar to "which came first, the chicken or the egg?" In this instance, gluten intolerance definitely came first, celiac is just one reaction to gluten intolerance.

  9. I honestly do not think anyone has figured that out. If you are gluten intolerant, any gluten is too much gluten. Anything made with flour..breads, pasta, crackers, cookies, cakes...all has too much gluten. As far as that goes, "gluten free" labeled foods have too much gluten for lots of gluten intolerant people. The US doesn't actually have a standard set, they do say anything with less than 20ppm of gluten is ok...but, that is debatable. Not eveyone can handle 20ppm, or 100ppm, or even 5ppm.

  10. However, no one on this forum or anywhere else lives a completely gluten-free lifestyle, unless you grow your own food and never eat anything that is not within your total control.....in other words, impossible to achieve. So, at various times, you will be exposed to and ingest some level of gluten. I think if there are those who do so and think they react down to 1 PPM, then they would not recover and have any quality of life. Celiacs do recover and many recover well. This couldn't be possible for many if it were true that the immune system was routinely triggered at such miniscule amounts. I would also guess that many who showed damage on smaller amounts (whatever those amounts are) could possibly suffer from refractory sprue, where there is no healing taking place.

    Not everyone heals at the same pace, not everyone heals, even Dr. Green tells us that...they do not know why some do, and some don't. I do have very good control over my foods, because I do not eat "gluten free" labeled foods, nore nearly anything processed. I do react to 5ppm. and if you don't, thats wonderful for you. Yet, don't try to tell those of us who do suffer, that we are wrong.


    The diet can be cumbersome; failure to comply with the diet may cause relapse. The term gluten-free is generally used to indicate a supposed harmless level of gluten rather than a complete absence. The exact level at which gluten is harmless is uncertain and controversial. A recent systematic review tentatively concluded that consumption of less than 10 mg of gluten per day is unlikely to cause histological abnormalities, although it noted that few reliable studies had been done. Regulation of the label gluten-free varies widely by country. For example, in the United States, the term gluten-free is not yet regulated. The current international Codex Alimentarius standard, established in 1981, allows for 50 mg N/100 g on dry matter, although a proposal for a revised standard of 20 ppm in naturally gluten-free products and 200 ppm in products rendered gluten-free has been accepted. Gluten-free products are usually more expensive and harder to find than common gluten-containing foods. Since ready-made products often contain traces of gluten, some coeliacs may find it necessary to cook from scratch.

    Even while on a diet, health-related quality of life (HRQOL) may be lower in people with coeliac disease. Studies in the United States have found that quality of life becomes comparable to the general population after staying on the diet, while studies in Europe have found that quality of life remains lower, although the surveys are not quite the same. Men tend to report more improvement than women. Some have persisting digestive symptoms or dermatitis herpetiformis, mouth ulcers, osteoporosis and resultant fractures. Symptoms suggestive of irritable bowel syndrome may be present, and there is an increased rate of anxiety, fatigue, dyspepsia and musculoskeletal pain.

    Everyone is different, but many people with coeliac disease also have one or more additional food allergies or food intolerances, which may include milk protein (casein), corn (maize), soy, amines, or salicylates.

    I have come to not trust maltodextrin, and I do not buy foods with it in them. Even if it's just CC, it's still is harmful to the super sensitive.

  11. I agree with the first two parts of that, but the third is just wrong. There have been several studies where confirmed celiacs were given controlled amounts of gluten with before and after endoscopy results compared. Of the studies I've read about, most used small samples for short periods (one had about 40 people for three months). The results show that most people in the test showed no change in their villi on small amounts of gluten but there were outliers who had significant damage on small amounts and ones who had no damage on relatively high amounts

    See, another study on celiac's alone, that doesn't mean it's the same for everyone. I am not celiac, or so some say, yet I am gluten intolerant, and this study means nothing to me. Maybe the little bit of gluten they eat does not bother their villi, but that same amount of gluten makes me very ill, and it effects me in different ways. Gluten also attacks the brain, not just villi, until they start testing the effects of gluten on those of us who are not celiac, then these studies are useless for us. It is "just guessing" for those of us who are super sensitive.

    A friend of mine was in one of those controled studies, with Dr. Green doing the testing. This man got very ill, nearly died, and it has taken him over one year to start looking close to healthy, and he is still pastie looking...how about the ones in the study that did have problems...they don't matter?

  12. When you exhaust all testing, and you do not get a diagnosis of celiac, that does not mean you aren't gluten intolerant. They do not know how to test for gluten intolerance yet, and it's much bigger than celiac. They are only concentrating on celiac for now. gluten damages much more than just villi. gluten can attack your brain, it depletes you of vitamin and minerals, whether you have celiac, or not.

    Have they tested your B12 level? A B12 level lower than 500, needs to be supplemented. Gluten depletes many of us of B12.

    Once you have all the testing done you feel is necessary, then go gluten free, if you feel better, then you have your answer.

  13. I think our immune systems are smarter than the medical professionals! 5ppm is too much for many of us and clearly triggers reactions.


    I think the medical profession has pretty much established at what level gluten will trigger an autoimmune reaction. Most of the books written by the top Celiac experts have discussed this. I will have to look the number up to make sure I have the correct information but I am sure that at 5 PPM, gluten is not a problem.

    It hasn't been proven..no one knows for sure, they are just guessing. They do not know enough about gluten intolerance yet to know how much is too much. Celiac disease is not the end all of gluten intolerance. We who are not diagnosed with celiac, have issues too, and we develop autoimmune diseases too...we don't want gluten in our lives at all. Damage to villi is not the only damage that gluten causes. Ask my neuro about my neuropathy, and how I got it.

    At any rate, there are those of us who do know not to eat products containing gluten, and we do react to the tiniest amount. We definitely can prove any scientist wrong who thinks we can have that 20ppm, or 10ppm, or even 5ppm. ;)

  14. http://query.nytimes.com/gst/abstract.html...96E9C94659ED7CF

    Sept 22, 2009

    CORN HIGHER THAN WHEAT; AN UNPRECEDENTED SITUATION IN THE GRAIN MARKET. September Options Close in New-York at 63 1-2 Cents Per Bushel, 3 3-8 Cents Higher than September Wheat -- Little Excitement, However, and the Sales Small -- Enormous Sales of Wheat -- "Shorts Running to Cover" the Explanation. CORN HIGHER THAN WHEAT

    Guess I just don

  15. Also, most of us ate glutened foods and sustained damage to our intestines for years before we had obvious symptoms. Just because you aren't sick doesn't mean you aren't hurting yourself

    For years, before I knew anything about gluten, I thought toast was my best friend. and all that time, I was feeding the monster. Of course, I craved bread, which is another symptom...craving the very thing you can't have! I never could pinpoint what was effecting me, I was sick nearly every night and some mornings...everything seemed to be an issue.

    Just because you aren't sick doesn't mean you aren't hurting yourself

    I think this is true for many still, even after going gluten free. It has been proven that many of our labeled "gluten free" foods still contain an amount of gluten that scientists feel is safe for us to eat. But is it? Who really knows what is "safe enough". I think as long as a person continues to eat gluten, they are doing harm to themselves.

  16. My sister, the celiac dietician told me to learn to love prunes. Actually, I have always liked them, and she loves them. She also always tells me I need to use flax in my diet, but flax makes me ill, so I ignore that advice, but maybe you could use it. It doesn't contain gluten, just doesn't agree with me.

    Make sure your supplements are gluten free. Many say gluten free, then you will find barley grasses in the ingredients...I do not trust barley or wheat grasses.

    I am very sensitive, and I do very well with Nature Made Multiple Vitamins...my B12 is made by Jarrow, my Vit D is Spring Valley (Walmart), I also take ferritin from Thorn called Ferrasorb.

  17. I hate to say this, but I just don't know if she's that sensitive to cc because her bloodwork was recently fine even though we never got new cookware (due to my ignorance until I discovered this site). But I figure since her levels were down to normal it must be OK, so I don't know if the time at my sister's could really have been from the stone baking sheet.

    This means you are doing a great job of keeping her gluten free. It doesn't mean that she can't get CC's somehow. I know this is a tough one, but when I travel, I take my own pan. It's the only way I don't get sick.

    My oldest son, my youngest, and myself have all been victims of car sickness. My mom said I used to have a big problem as a toddler, my son was the worst when he started school and rode the school bus, especially the country roads and chatter bumps. My daughter didn't mention it until a few years back. She definitely needs to be gluten free...now, I know my worst problem was while eating gluten. I do not get carsick anymore, of course, I never, ever ride in the back seat.

  18. Tabasco...all those tests are telling you is, you aren't celiac. That doesn't mean you arent gluten intolerant. Gluten intolerant is just as bad, often times, I think it's worse. Doctors do not recognize us as having a problem with gluten, so they tell us not to go gluten free...we just keep causing more damage then. Had I not gone gluten free 9 years ago, who knows how bad my neuropathy would be now.

    As Raven said, your B12 is too low, anything below 500 is suspect, even though the doctors say it isn't.

  19. Is this article saying my life may be shorter regardless of my gluten free lifestyle?

    I don't think it is saying that at all. When you read further into the article, they explain what happens to an undiagnosed celiac...which is true, celiac/gluten intolerance can shorten your life if you do not know you have it. It's just an informative article, telling the symptoms to watch for, if you have any of the symptoms, ask your doctor about being tested.