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      Frequently Asked Questions About Celiac Disease   09/30/2015

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Zelnorm (ibs Drug) Pulled Off The Market For Deaths
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Zelnorm, made by Novartis, was pulled off the market on March 30, 2007: http://www.webmd.com/ibs/news/20070330/ibs...n-off-us-market

It was prescribed to people diagnosed with IBS.

I can't help wondering how many of those people to whom it was prescribed actually have celiac, and their doctors never bothered to look for it but just handed them a prescription.

I noticed in my local paper today ads about this from some of the law firms who specialize in medical malpractice. I was thinking this might be another way we can get celiac awareness "out there." We can contact these law firms and give them info about celiac, which should totally win their cases for them, both against Novartis and against the doctors who wrote a band-aid prescription without ever looking for a dietary cause of symptoms.

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I thought this part was interesting. I'm sure these patients don't try gluten-free diet before their doctors pronounce their condition unresponsive to any other treatment.

Though the drug will no longer be widely available, patients who have no other treatment options could still get access to the drug. The FDA said it is likely to allow Novartis to continue selling Zelnorm to patients if their doctors say they have disease that does not respond to any other treatment and if the benefits of treatment with Zelnorm outweigh the risks of serious side effects.
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I noticed that the Zelnorm story on WebMd has a link to a WebMd message board: http://boards.webmd.com/webx?THDX@@.89531f...child=.89531f86

One person posted a message saying that if she/he can't take Zelmorn anymore, she/he will go back to the Atkins Diet "which seemed to help". If someone here has a username/password at WebMd, it may be worth posting a reply letting that person know that gluten intolerance could be the problem.

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I was put on Zelnorm prior to my diagnosis.

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Ugh. This is why I consider the first few years of a prescription being out on the market to just be another phase of their clinical trials. Soooo many drugs get pulled that I wouldn't trust anything until it's been out on the market for a few years.

Nancy

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I was put on Zelnorm prior to my diagnosis.

Did it help you?

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I was put on zelnorm by a doctor who refused to test me for anything. He said that all I had was IBS. I took zelnorm for a year, and it made me even sicker. It was horrible. Finally I switched to a private M.D. who practices alternative medicine and he took me off of zelnorm immediately and started testing me.

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Did it help you?

Did it help me? I never thought that I could regulate it, or rather regulate me. I do recall that it kept me in the house in the morning for several hours. I don't remember any side effect other than that. Soon after that Celiac kicked in, and found way no need for it.

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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
    • I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.   - ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?  
    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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