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Posts posted by darlindeb25

  1. 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.

  2. 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.

  3. 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.

  4. 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?

  5. 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. ;)

  6. 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

  7. Labbott...does your son have a definite diagnosis from a doctor...a doctor willing to sign on the dotted line that he has celiac disease? That can be used in court, to prove your son has to be gluten free, that his father has to provide him with the proper enviroment, if he gets any visitation.

    I too got divorced just a few years before I found out I was gluten intolerant. I have been gluten free for 9 years this last July, and divorced for 11 years this month. Gluten attacked my brain, caused anxiety, agoraphobia, anticipatory anxiety, along with all my gastro symptoms. My ex often times pretended to understand, yet he didn't. Parenting was all left to me, he chose to drive semi 150 miles from home, and kept an apartment in that area. Now, when I look back, a very disfunctional lifestyle. I swore I would not divorce until my kids were all through school, yet I didn't make it, I couldn't take it any longer...my last 2 were a junior and senior in high school. I didn't have the same fear as you though, none of my kids were gluten free. At their ages though, they never stayed with their dad any ways.

    Lots of us can understand where you are right now.

  8. Labbot--I would never tell a person that something like this couldn't happen...no one knows for sure, and those who will tell you that it absolutely can't happen, are those who do not have this type of reaction. Many gluten intolerant walk around with their heads buried in the sand, thinking that the 20ppm of gluten in their "gluten free" foods can't hurt them...we are the ones proving it can. I would love to not be so super sensitive, yet, we may be the ones much better off in the long run.

    I was very sensitive to chemicals, inhaled, for some time. They made me very ill... severe neurological issues like blinding headache, problems with cognition, memory, language then motor skills...the need to sleep never hit me, I had insomnia. This has finally gotten better for me, lets hope it's just a stage for you too.

  9. Do you still use dairy? Dairy causes my insomnia...took me 30 years to figure it out.

    The food syou are eating are not undereating...it's much healthier than many people. Are you eating fruits with heavy syrup, or do you stick with light syrup, or fresh fruits. Do you drink caffiene coffee? Have you had a sleep study done? I never, in a million years, would of thought I had sleep apnea, and when my neuro ordered a sleep study done, I laughed. Well, I have sleep apnea, and have to use a CPAP every night...I also have 2 sons with sleep apnea. Are you on any meds...a change in diet, can change how a med works...the med may be too strong now if you are absorbing better without gluten.

    The junk foods are not helping...you have to try to get away from that habit.

  10. I find it so depressing that so many people tell us to trust them, and then gluten us. I'm with Steph, there is nearly nothing labeled "gluten free" that will not gluten me. for a long time, I didn't even realize I was being glutened...my glutened symptoms have changed over time, so I didn't realize they were symptoms of being glutened. Now, these incidents will be far and few between, simply because I refuse to believe these companies anymore.

    There needs to be new FDA standards for "gluten free" for any of us to be safe. It's hard, especially for kids to give up foods they have always loved. So these companies play on that fact, to sell products. Yes, some of these companies are started by gluten free people, and they truly are trying to provide us with gluten free foods similiar to what we used to eat. Other companies are just there for the $$$$$. Bottom line is making money off those who need speciality foods. We know that already, just by the pricing of those items. They know we crave these foods, and we can only have them if "gluten free" so they capitalize on that very fact.

    It's all very upsetting.

  11. The mention of coconut reminded me...SoDelicious Coconut Milk got me...definitely CC. When I notified the company, they first told me it wasn't possible, yet when they sent me a refund, they thanked me for letting them know there was a CC issue, and they would be looking into it.

    I just found the SoDelicious Coconut Yogurt in our local Stop-n-Shop yesterday, but now, I will not try it, I don't trust easily after being bitten once. Besides, who could afford to eat it, $2.29 for the tiny container.

    Just when I was going to try Pacific Almond Milk, someone mentioned being glutened by it...so, I gave up.

    I experimented this weekend...if I add lactose free milk to my coffee anytime after lunch, I have insomnia, if I use it first thing in the morning, I can get away with it. One good cup of coffee a day!!!! :D

  12. Utz Chips come to mind--they made me very sick

    This surprises me Patty, I eat the regular UTZ all the time, and never have a reaction. Did you eat reg or flavored?

    I can't eat any "gluten free" labeled foods. The cereals make me ill, as do any of the bars, cookies, crackers, anything with other grains in them. I feel the CC issue is my problem. All the other grains are CC'd by gluten to begin with. Along with the fact that most "gluten free" foods still contain at least 5ppm of gluten and up to 20ppm.

    Meds are an issue too. Azo Standard is considered gluten free, yet it glutened me and I was sick for 3 months. Many vitamins are listed as gluten free, yet make so many ill, and many have barley or wheat grasses in them....I just do not believe they are safe.

    In my opinion, this isn't good for any of us, even if you do not react to the product.

  13. I agree with UTZ's chips...they are good. I can't eat Kettle chips, they make me sick. I tried them when I was on vacation in Mich, because they do not have UTZ there.

    I used to eat regular Lays chips all the time, never had a problem with them...the bags from Plano Texas are ok...but, they changed their oil from sunflower/safflower oil to sunflower/corn oil, I won't touch them anymore.

  14. Just did some researching on coconut intolerance...thank you for this thread.

    Lately found out coconut milk give me upset stomach in particular when I Go to bed ( tossing and rolling all night ) but to a lesser reaction than gluten and dairy products

    I started sleeping through the night when I gave up dairy. That lasted 14 days, then the problem started again. I guess the honeymoon is over with coconut. I was hoping it would be the answer, yet my tummy hasn't felt good for well over a week now. I tried blaming it on cashews, but haven't had them for well over 1 week, before that I tried blaming it on raisins, but haven't had them either. The coconut milk is the only constant in my life that has been new.

    So, coffee without milk, I can do it if I have to, or just give up coffee. :(

  15. Supposedly it has rice pasta and "no gluten ingredients". I've eaten it once before with no problems. Anybody know anything about this product and what "no gluten ingredients" means?

    "No gluten ingredients" to me simply means, they didn't add gluten, yet it does not necessarily mean the product is 100% gluten free. Any grain can conceivably be cross contaminated by gluten. Even when GIG tests products before certifing them gluten free, the product can still contain 20 ppm (parts per million) or less, and pass testing. Some celiac/gluten intolerants are too sensitive to have even 5 ppm. I have given up all grains for this very reason.

    Yes, you may have eaten the product once before with no problems, and still get sick the next time. One time the rice may be gluten free, the next time it may be CC'd.

    Even when a company says it has dedicated lines, unless it controls where it's product is shipped from, then there may be CC.

  16. My last bloodwork for vitamins came out "fine" too but I don't buy it. I have such a hard time tolerating suppliments--I've been thinking about trying a Kirkman Labs multivitamin. The only one I take now is Caltrate 600 with D (2 a day) --by some miracle, I can tolerate it.

    I havent tried Kirkman. I have used Jarrow Vitamins, and Country Life, and been ok with them. I use Nature Made Woman +50 Daily...also have used Natrol with no problems.

    Normal Ranges are set for normal, everyday life, something we do not really have. I have to wonder if "normal levels" are adaquate for us. I definitely know the "normal range" for B12 is very outdated. Most doctors feel a level of 200 is fine, I would not beable to walk if my level was at 200. Taking 5000mcg daily, my level is 1015, which isn't high at all.

  17. I'm wondering if I'm dealing with a nutrient deficiency caused by the radical change in my diet. It it very frustrating and frankly I'm more than a little worried and scared sometimes by it.

    I know what you mean. It upsets me too, it's so frustrating. People joke with me and say it's just our age, it happens, but I feel this is different. I too wonder about a vitamin I am missing. The docs check my vitamin levels, and tell me they are find, in the normal range. Yet, most are just barely in the range, like my ferritin at 22, with 20 being anemic. My Vit D is only 26, so I have been taking it for months now. We know my Vit B12 was very low, causing neuropathy...I now take 5000mcg daily of B12, and finally, my neuropathy showed a slight improvement.

    Vitamins are so important. When you are as intolerant as most of us are, I'm sure we can't be getting our needed vitamins from food.

    I just keep shipping away at this all.

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