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The Lovebug

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  1. I recently started taking a COQ10 supplement and although I love the extra energy and focus it is providing, I also noticed I'm having very mild celiac symptoms. Today I put it together, wondering if the COQ10 might be at fault. The ingredients listed for the softgels include gelatin and glycerin, in addition to soy lecithin. I couldn't find on my lists of unsafe ingredients either gelatin or glycerin. Are they no-nos? If not, perhaps its the soy I'm reacting to. Appreciate any thoughts.


  2. Just about any "whole" food -- fresh fruit, vegetables, meat (unprocessed), fish, rice and potato (a veggie, I know) should be safe and will help get you through the initial phase of going gluten free. After a while you can probably add dairy.

    I've spent a lot of days and nights rolling on the floor with stomach cramps and know just what you're going through! Take heart, it does pass.


  3. Hi Spunky,

    Your symptoms certainly sound like they could be celiac. The Mayo Clinic website says that positive response to a gluten-free diet should in-and-of-itself be diagnostic for Celiac. I went gluten free after reading about Celiac online, and my symptoms subsided within about 24 to 48 hours. So I would think that a 3 week trial is plenty of time. If it IS celiac, and you go gluten-free, you'll probably know almost immediately.

    Some doctors insist on doing tests while others (many of the experts in the field) don't. The gluten-free diet is probably the most specific, non-invasive and inexpensive test you can do.

    You mention lack of a period, which can be Celiac related but can also be a result of running, can't it? It seems to me I've heard that avid runners often stop menstruating.

  4. Although I've been gluten free for several years, my new GI doctor wanted to do the "new" genetic test from Prometheus labs and I got the results yesterday. I have the DQ8 heterozygous haplotype. According to the paperwork, about 95% of celiacs have the DQ2 and only 5% have the DQ8. Is there a difference in these two in terms of severity of symptoms, age of onset, racial/ethnic group, etc.? Does heterozygous mean that the gene came from one parent, vs. the homozygous coming from both? What are the chances my children inherited the gene from me? My doctor didn't seem to have good answers about these things. He described my risk of having celiac, based on these results, as "moderate," and said that my case would not be as severe as someone whose risk is "very high." Well, my symptoms were anything but moderate in the 6 years I experienced g.i. distress before I was self-diagnosed 5 years ago! But I certainly don't fit the profile of the skinny, undernourished waif that I see described so often. Could it be that the 5% of us with the DQ8 genotype are the ones of us who are overweight instead of underweight?

    Any help here would be appreciated.

  5. I've been drinking these waters for awhile instead of soda. Recently started having very loose, fatty, stools with cramping and bloating (not bad, just persistent). I've ruled just about everything else out as a cause, but I've sure returned to my old symptoms. I cut out the water a couple of days ago and my symptoms have resolved. Hmmm . . .

    Ingredients: Purified water, citric acid, natural fruit flavors, sodium polyphosphate, potassium sorbate, sucralase? and a couple of other things which I can't read (they print them so small!).



  6. I had a look at the gluten test kit offered on the glutenfreetravel site. Obviously a bit cumbersome for taking to a restaurant or such. But it does mean that someone is thinking about this problem and maybe something usable isn't too far off.

    Scotty, I think most of us find that we have symptoms after being glutened which can last for 2 or 3 days. So don't be alarmed that yours went on for so long. The first day is pure pain and agony, the second is usually ghost pains and lots of "brain fog" and the third is lots of weakness, but starting to feel human again.

    Oh how I long for the good 'ol days when things were so much simpler.


  7. Yes! I don't know all the science here, but I do know that anemia is a result and, I think, kind of late stage development of Celiac. My father, who died a couple of years ago, had a serious bout of "severe" anemia about 10 years ago and was hospitalized for several weeks. The doctors determined that he was having pervasive internal bleeding, but they weren't able to find the source. Eventually, he was able to walk out of the hospital but he remained anemic and was on heavy doses of iron, for the remainder of his life. We didn't know anything about Celiac at the time. But I am now convinced that his long struggle with bad gastric problems, as well as the anemia, meant that he had Celiac. I was self-diagnosed about 4 years ago -- about a year before he died. My response to the gluten-free diet has made an amazing change in my life. I only wish we had known about celiac disease many years ago, and been able to save my dad a lot of pain and agony.


  8. Yesterday my husband & I went to Costco and he wanted a hotdog so we both had one, I ordered mine with no bun. Within 4 hours my stomach hurt so bad I thought about going to the ER. ...is this being "glutened"??? Anyone with suggestions I'm listening as I never want to feel so miserable again.


    Dear Motorboater,

    It sure does sound like what I go through periodically, and I've been as gluten-free as I can get for 4 years! Yesterday, within 5 minutes of finishing breakfast, I began cramping and bloating and, eventually vomiting. I spent the rest of the day, in a weakened state, trying to sit or lie still so the symptoms wouldn't return. Today, I'm trying to trace what it was that caused my reaction. Mine was not the flu -- I now know the symptoms of being glutened and can usually trace it to something I've eaten without checking ingredients. It's just so hard to be on-guard ALL THE TIME!

    Did you eat any condiments with the hot dog? Mustard, catsup, relish, kraut, etc.? Maybe that was the source of your glutening. I recently had a "duh" moment when I realized that the mints which I pop into my mouth all the time (Mentos), because they were soothing to my tummy, were actually glutening me! It never occurred to me to check the ingredients because they aren't "food." But I can now attribute several bouts of hanging over the toilet bowl directly to my consumption of Mentos.

    Welcome to being a member of the celiac community. This board is a wonderful source of information and support.

  9. Bellyfat,

    Good news on the kidney-thing. Glad to hear you are ok, after all.

    Re the sleep mask: I does take a little getting used to, but I can't sleep without mine now. I invested in one made by Tempur-pedic so it's a lightweight foam than molds to the contours of your face (Brookstone and similar places carry them). It completely blocks out light, which allows your pineal gland to produce melatonin, which induces sleep. I swear by it. The earplugs are another thing I can't do without. They probably do take a little getting used to (I've used them for so long, I've forgotton). They were a godsend when I thought my husband and I might have to sleep in separate bedrooms because of his snoring. They don't completely eliminate noise, but they lower the decibels considerably.

    Hope this helps.


  10. If anyone has any recommendations for a pedi GI in or around Omaha, Nebraska I'd be so thankful! We saw a new doc in town yesterday and he was AWEFUL! I figured if he was at Children's Hopsital he'd have to at least be willing to listen, but boy was I wrong.


    Here is a link to the Celiac Sprue Association, which is headquartered in Omaha: http://www.csaceliacs.org

    It appears that they are affiliated with the University of Nebraska Medical Center. They have a Dr. Frederick Pausiton (can't remember that I spelled it right) on their Medical Advisory Board, from the University. I would think his office would be the place to start.

    Good luck.


  11. I'm also trying to get better sleep during the night and not nap at all during the day so I can hopefully train my body to stay asleep all night. I've only slept maybe 10 or so times all night through in the past 9 years.


    For what it's worth, I've found a sure-found formula for good sleep. First of all, I take an Excedrin P.M. at bedtime, then I put ear plugs in my ears and a sleep mask over my eyes. Other than a trip or two to the potty, I sleep like a baby. ;)

    I agree that if you sleep well you're so much better able to deal with what life throws your way the next day. Hang in there, kiddo!


  12. yeah these were Tyson chicken breasts, 3 in a package. the only ingredients were chicken and chicken broth. bought them at krogers in the meat aisle. i guess i don't understand packaged meat. i mean it comes into a package sometime. but these were plain as can be. if it was not the chicken then i am just baffled on what it could have been.


    Were these pre-cooked Tyson chicken breasts, or raw? Again, I think the pre-cooked, pre-packaged meats in the meat aisle are problemmatic -- at least that's been my experience. If they were raw, and you cooked them, I'd be real surprised if they were the source of your problem. But it sure does sound like something got you!!


  13. I've been hanging around this board today, trying to find out what others' experiences have been with Nexium and Mentos. It seems a lot of people are Mentos addicts, as was I, until I realized that my last two (or more) bouts of vomiting are directly attributable to my eating Mentos. I had a "light blub" moment when, after spending the other night hunkered down over the toilet bowl, I put a Mentos in my mouth the following morning and immediately started cramping up and becoming nauseous. One of the threads I found this morning discussed the fact that the fructose in Mentos is derived from wheat. So this is a warning to those of you who haven't found that thread from 2005. Mentos are dangerous to your health!!

    And then, just as my tummy was starting to feel good again, I took a Nexium last night before bed and woke early this morning with mild cramps and bloating. Or could it be the ice cream I ate after dinner? Hmmm . . .

    Anybody have any thoughts here?


  14. My daughter is diagnosed as celiac but the DR. did not do the blood test. She has been on a gluten free diet since August. But, she is in college and sometimes while eating out gets gluten in her meals. She is then extremely nauseous the next day. Is there anything that can help stop the nausea? I know there are drugs to help pregnant women who are extremely sick. I am still learning about this disease.


    I found this thread while searching for something else, and you may have solved the problem for your daughter by now, but I just wanted to add my experience. I, too, get violently nauseous when I am glutened. A few times I've ended up in the emergency room and was given an injection which stopped the vomiting. They then gave me some suppositories to use if the vomiting returned. I've now used the suppositories for a couple of other bouts of vomiting (read "glutening") and am going to ask my doctor for more to have on hand, "just in case." There is also an over-the-counter syrup that can be helpful if the nausea has not yet led to vomiting. It is called Emetrol. I haven't actually checked it to make sure it is gluten free. Hope this help.


  15. I have been gluten-free for over 4 years but still bloat constantly. I start by looking 6 months pregnant in the morning and by the end of the day I look 9 months pregnant -- WITH TWINS! :o I have a hiatal hernia, also, but don't think that has anything to do with my bloating. (At least the hh was diagnosed long before I started having Celiac-related symptoms.) I, too, have candida overgrowth but had never thought of that as being a cause of the bloating. After reading this thread, I think I will increase my probiotic intake. I'm currently taking 1 billion live cultures/daily. What is the therapeutic amount? I'm also going to cut dairy completely to see if that makes a difference. I only use Lactaid milk on my cereal, but consume a lot of cheese and, occasionally, ice cream.

    Any other thoughts?


  16. I saw Dr. Allesio (sp?) at the University of Maryland Celiac Clinic and had a favorable experience although I really just wanted to know whether I should be tested. I've been on the gluten-free diet for about 5 years and, aside from an occasional "glutening" by someone else, I've had a good response. Before that I was extremely sick for about 6 years and had occasional bouts for many years before that. I also had questions about whether my children should be tested (now that they are starting to have children of their own). Although Dr. A. had an intern see me initially (and we spent 30-or so minutes together), he was pretty quickly in and out of the room. But it felt wonderful to be with someone who was SO knowledgeable about celiac, had great humor and warmth, had a very pragmatic approach and left the door open (so to speak) to further visits, questions, etc.

    It was worth the hassle of traveling so far and waiting so long . . .


  17. I hadn't thought soy was a problem for me until I started taking a new brand of probiotic recently. Within a couple of hours, I was having bloating and cramping problems similar to those I had with gluten. I emailed the manufacturer and was told their capsules were free of wheat, dairy and gluten, but they do contain soy. So now I'm strongly suspicious that I am also soy intolerant.


  18. Dear nowheatnomilk,

    1. I've long suspected that I had some liver malfunction -- for one thing, I have a lot of bloating and swelling in my midriff area and for another, I have occasionally had a red, itchy rash which appears only in the area where my liver would be (upper right quadrant of my trunk).

    2. How do you do a liver cleanse?


  19. I just started taking probiotics but had a reaction to them. I emailed the people at drlark.com to ask about gluten and here is the response I received:

    This product contains no added sugar (sucrose, fructose, lactose), salt

    (sodium chloride), yeast, wheat, gluten or milk. There are also no

    preservatives, artificial colors or artificial flavors.

    They do contain soy, however, and I'm beginning to think that's the source of my trouble. <_<

    I ordered some probiotics called Natrol Free (claiming to be free of any allergens) and will see if they work.