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Showing content with the highest reputation on 08/12/2010 in all areas

  1. 1 point
    I am a 23 year old mother of two. Always generally in good health. Until following the birth of my 2nd son this past July. I was fine after the birth but around 6 months later developed a weird numbness in some of my fingers. This frightened me to say the least and i was overcome by a huge amount of neurological symptoms. Twitching, weakness, burning etc. Saw neurologist, had mri and diagnosed stress. Symptoms passed. This was then followed by a bowel blockage after i didnt go the toilet for ten days. I have always been unexplainably constipated. I also get massive stomach spasms, which feel like a baby moving around! Since then my muscles have become more and more fatigued. I can barely hang one towel on the line, cant ride my bike, stir some cooking like cookie dough. Stairs are a killer. My fingers are also always looking wrinkled like when u have a bath. Not dehyration. They swell up for a second, then go back down. I wake up stiff and in pain, which subsides. I also have extreme diffuse hairloss since my son has been born. I have visited a specialist gp. All my antibody tests for arthritis and lupus etc were negative. I have no bloodwork that leads them in any direction. I have iron def, ferritin 13 and borderline b12 defic. 154. Range is 145 - 600 or so. I am taking iron and my overall tiredness has subsided but not my muscle fatigue and other sypmtoms. My dads sister has celiac disease confirmed by biopsy. My children are both lactose intolerant and i also suspect cows milk protein intolerant. Both vomitted, never slept and screamed until taken off ALL dairy not just put onto lactose free foods, drinks. Just frightened and wondering where to go from here. I have done a "in the box" celiac IgA sensitivity test which came out negative. Im afraid i do have some undiagnosed serious disorder but at the moment the docs are saying not enough proof. Im grasping at straws here i know. Any opinions would be amazing. sorry to rant.
  2. 1 point
    Never got a definitive celiac answer ... 6 yr old has been gluten-free for almost 3 years now. Along with his GI, we decided to test him out on gluten for 2 months and then do blood work and scope him. He had a gluten lunch for the 1st time in almost 3 years. Two hours later, vomited for almost 2 hours. Now has tummy ache but not nauseated anymore. Dr. thought it seemed to quick and too harsh of a reaction. What do you think? What's your experience?
  3. 1 point
    Glutenateor (gluten Terminator) - my 14 yr old son who checks the small ingredients on stuff for me and makes sure no gluten passes my lips. Also, eats gluten-free menu at PF Changs so we can share Gluteodor - the smell of donuts and bakeries
  4. 1 point
    I have almost all of those symptoms! I am 24 mother of 2 also and just posted a very similar post. It's so scary and you think your losing your mind! You feel like NO ONE believes you. I swear my boyfriend probably think I'm so lazy becuase I never have the stregth or energy to do ANYTHING. I get tired SO fast. Even walking up stairs and I'm not a BIG person at all! I forget things I work and randomly even feel like i'm drunk when I haven't had ANYTHING to drink! I don't think your crazy and i'm sorry to say I can't tell you for sure if it's gluten becuase I don't know much about it and i'm waiting for my post to get on here so I can get some answers myself! But I can totally relate and I hope that that is ALL that is wrong with us.. becuase I would like to start eating better anyways...Please feel free to e mail me if you want someone to talk to about symptoms... becuase I know exactly what your going through and your just about the same age. reginarussell33@yahoo.com Reggie
  5. 1 point
    Glutenvy- the feeling that came over me at breakfast this weekend when everyone was eating croissants from a French bakery and I was eating another rice cake!
  6. 1 point
    Too funny, I'm "ice-ing" my knees as I read this post! I never even thought about possibly getting glutened, even though achy bones were some of my symptoms before diagnosis. That would probably explain the bloating and mild cramps too... Lol, just when I think I've got a hand on this gluten-free lifestyle.... oh my Now it's time to figure out the culprit. It's difficult be the only gluten-free eater in a house full of "glutenites".
  7. 1 point
    The one I had is organic(Apple and Eve), I only buy organic everything. And it has no added sugar, the only sugar in it is whatever sugar that was in the apples. Anyway, I only had one itty bitty tetra pack yesterday(the one w/ a straw). We'll see today how it goes, I think I'm ok.
  8. 1 point
    Hey LauraBeth, I have wondered the same thing.... I am a substitute teacher, so I haven't worked at all since school got out. Thank goodness school is starting up again here soon, because my "reserves for the summer" are running low. Of course, this Celiac Diagnosis has helped deplete my reserves, especially in the beginning, because I had to stock all of the necessities and it got expensive! I chose to not replace my frying pan, because I simply couldn't afford to. I use "barkeepers friend" (which is a lot like comet but less abrasive) on the cookware and it seems to be fine. When I have an excess in cash again, I'll probably run over to a discount store and get a cheap, but not too cheap, frying pan, etc. That way, I can stop obsessively scrubbing my poor old pan. I haven't noticed any CC from the old pan, but perhaps its mild and I'm barely noticing... but I don't think so.... even though I have learned that I am VERY sensitive. Good luck to you, and I hope everyone's symptoms get better soon! I have a bad back (bulging disk, and arthritis) but I'm amazed at how much better my chronic pain has gotten since going gluten-free. When I get glutened, sure enough, my back flares up and I'm back on medication. Joint pain, bone pain, etc.... Again, I am baffled by all the ways gluten can hurt us! ((hugs))
  9. 1 point
    It is great to recognize those more subtle symptoms. That will prevent you from long term low level gluten ingestion which has led to total return of symptoms for me. Then it was really hard to figure out what it was.
  10. 1 point
    Your onset of symptoms and the symptoms are very familiar to me. Your B12 levels are really quite low so I hope you are supplementing with sublingual B12. After you are done testing I hope you will give the diet a shot no matter what the results.
  11. 1 point
    A couple of other points come to mind. You could of course have multiple sensitivities, such as to dairy products. Peripheral neuropathy can be associated with Celiac, actually there are a mess of symptoms associated with gluten intolerance. Other symptoms can include mood swings and depression; gluten can affect your whole body. Gluten intolerance can start with stresses to your system, such as flu virus in my case, and perhaps the physical and chemical changes you undergo during pregnancy. I was talking with a doctor friend of mine a few days ago and she said "Celiac seems to run in families." I replied that it is genetic. She said they really didn't study it in medical school beyond mentioning it. A reason why it is so underdiagnosed; of the estimated 1 in 133 that have Celiac and many more that are allergic or sensitive, very few are diagnosed.
  12. 1 point
    Your symptoms are very suggestive of gluten intolerance. Even if you had the Celiac Panel blood test and it came back negative, you could still be intolerant or sensitive to gluten. It would be good to have all of the gluten tests run before you went off gluten, otherwise you commonly get false negatives. If gluten is the or a culprit, then it probably wouldn't take more than a few days of gluten-free to feel improvements. gluten-free is not easy in that gluten is in very many processed foods, hidden as hydrolyzed vegetable protein, modified food starch, and other manifestations. I have been gluten-free since getting the flu last fall; all of my tests have been negative but even cc (cross contamination) from gluten-free food being grilled on a surface that was used for breading, "processed in a plant that also processes wheat...", etc., makes me ill. After getting the flu I had severe joint pain, muscle aches, brain fog, lethargy, D and other GI problems, etc. After going gluten-free my joint inflammation left after 1.5 months, the GI problems resolved within a week. You are in a tough place, particularly not knowing causes and if there is a fix. We've been there. It is good that you have the strength and resolve to find your cure.
  13. 1 point
    My son gets D from apple juice too! Same thing, always has. Even as a little baby, people would say "don't you give him a juice bottle?" And I'd say "not unless I want to dehydrate and kill him!" :0) Just a few weeks ago, shortly after I was diagnosed with Celiac, that same son, now 11, decided he wanted to try gluten-free too. He's feeling so much better! He used to fart up a storm and complain of back pain, tummy pain, D, and was generally very cranky and emotional. Since going wheat free he's like a new kid! Thinking back to that apple juice thing....I wonder if he's had food allergies all his life, and I just didn't notice. O no, now I have "Mom guilt!" Regardless.... I think getting D from juice is pretty common. It's a TON of sugar, despite it appearing "healthy." Lots of manufacturers make lower sugar versions of juices now. Perhaps you can try those? Now I'm not sure about the gluten content etc.... That would have to be researched, but I know that neither me nor my son do well with juices. Get well soon!
  14. 1 point
    The other day on one of the newsgroups I frequent, a woman who always acts like she is an expert on everything said that celiac can go away. I asked her for a cite. As I thought, she posted no cite. I don't think there is one. But I too get sick of the comments about "What *can* you eat?" Or, "I could never follow that diet!" I can remember getting upset when daughter was first diagnosed. She had two back to back dance recitals to be in with about an hour break in between. At that point we hadn't yet found a gluten-free bread that she liked. Or really even found good meals that she liked. I commented to one of the other mothers that I didn't know what I could bring her for lunch. She told me that they just sent out for pizza. When I told her she couldn't eat pizza because she was allergic to wheat, gluten and dairy, she replied... "Couldn't you make an exception just this once?" I then replied to her... "Yeah. If I don't want her to dance. Cuz if I did that she'd spend the next hour or more in the bathroom getting sick!" I later found out that this person is a kindergarten teacher. Scary!
  15. 1 point
    I was told by a celiac health food owner that sprouted wheat was okay. Why? It was sprouted so it was now something else. This was when my daughter was first diagnosed. I bought something with sprouted wheat. Can't remember now if it was tortillas or bread. Soon after eating the stuff, daughter got sick. The Dr. who diagnosed her actually told me to give her spelt instead of wheat. Same thing happened. She got sick! I now know that not only is spelt a form of wheat but that she is allergic to both things.
  16. 1 point
    Yeah...I hate all those darn glumercials around Christmastime.
  17. 1 point
    Ba-da-dump LOL! Good one Maceroni! I still do my grocerygaming. I still have to feed 5 other people, the dog, the guinea pig and the two remaining, barely alive, hanging on by a tread hampsters. I am a stockpiler so when I find things I CAN use that is mainstream but generally gluten-free I stock up on it. (coffee, sugar, Splenda, cheese, butter, meat etc...) So I still use fistfulls of coupons every week. I also stockpile toiletries and papergoods. I just have to spend the extra on my personally and put it in a box with a rat trap on the top to keep ppl out!!! Esp my caramel popcorn... oh drool. NO TOUCHY!
  18. 1 point
    Aren't-cha sick of all the glupidity in our society?
  19. 1 point
    My 7 yr old was diagnosed with celiac based on bloodwork a year ago, she had almost no symptoms (just not growing for a year and some tummy aches). We also skipped the endoscopy choosing to try gluten-free and see how her #'s went...since going gluten free, her #'s are back to normal. SO that was proof enough for us. Anyway, she has only been accidently 'glutened' about 3 times this past year. In all three instances, she has had a reaction approximately 1 hr after eating. IN most cases, it was nothing outright with gluten, but more of contamination (food at a restaurant, possibly crumbs in icecream, etc..) We now know when she gets sick, we look for what she ate an hour ago. It does make sense that your body starts to digest food right away, so a reaction in 2 hrs time sounds normal to me. THink about people who are lactose intolerant, same thing.
  20. 1 point
    I don't think that's too soon. If I get glutened, I start having symptoms within 30 minutes. So your hunch is correct. I would feel sick up to a whole week after the glutening.
  21. 1 point
    Six months after my daughter went gluten free she had an item (accidently) that had a fair (but not majority) amount of wheat in it. She reacted within the hour with nausea and regurgitation (spitting/vomitting up mouthfuls of food for the rest of the day). Her initial doc thought it was further evidence of her gluten problem. Her 2nd doc (not by choice, 1st doc moved away) told me it couldn't happen like that . . . I know what I saw!!! . . . and her teacher saw it . . . as well as the school nurse. By the next morning, it had passed and she went back to school. It can happen that fast and it can be that violent.
  22. 1 point
    I so enjoyed reading these posts just now!!! I am glad I was alone - only my dog looked at me funny while I laughed out loud!!
  23. 1 point
    lmao! Yes, Kellogs is definately a Glutenopoly!
  24. 1 point
    I hope you can get her to fully understand what the gluten free diet means. When we have neuro effects we need to be strict with the diet to have them resolve. It also takes more time than getting rid of just tummy issues. It sounds like she may have ataxia and things will only get worse if she doesn't adhere to the diet.
  25. 1 point
    Do Glutaloompas work at the Glumpanies?
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    • If celiac disease is the cause of your reflux, it can take weeks, to months or a year for healing on a gluten free diet.    I have celiac disease but only was anemic when diagnosed.  Last year, I developed reflux for the first time.  Another endoscopy determined that I  had healed from celiac disease, but stomach biopsies revealed chronic autoimmune gastritis which slowly went into remission on its own after a many months.   I assume my Gastritis will flare up again in the future.   Unlike celiac disease where gluten is the trigger, the trigger for AI Gastritis is unknown.   To cope, I would sleep elevated and avoided eating late meals giving my stomach time to empty long before bedtime.  I also reduced coffee and ate a bland diet.  Reflux is awful.  I am so sorry that you are ill.  
    • Hi, how fast after starting with gluten free diet did you notice any improvement with heartburn or reflux? I am 4th day of diet and reflux seams to be worse than earlier. So I am a bit concerned. Please, help!!! Aya
    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
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