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sleepmonger Joined: 09 Sep 2011 Posts: 4	Posted: Mon Sep 12, 2011 9:11 am    Post subject: Frustrated. Hello all, This is my first post. I'll spare you all my story, it's pretty much the 100th verse same as the first (stomach pain for years, chronic diarrhea, fatigue, etc.) I recently had bloodwork done, full Celiac panel, and stool tests, as well as an abdominal ultrasound and upper GI xray. I called the doctor's office today, and they told me they were still waiting on the stool tests, but all the other tests including bloodwork were normal. I'm in a fair amount of despair right now. I really thought this was the answer - I cut out gluten entirely after my bloodwork, and have been feeling better, I haven't been this stomach-issue free in a long time. I know there's a high rate of false negatives with regard to bloodwork. Is there any chance a stool test will show anything the bloodwork couldn't? I suppose I don't really fit in here, since there's nothing wrong with me exactly, I just thought perhaps someone might understand. I feel better eating GF...but I can't help but feel like I'm just being silly and making it up now.
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celiacmaine-iac Joined: 19 Dec 2007 Posts: 2131 Location: Maine	Posted: Mon Sep 12, 2011 10:33 am    Post subject: Hi! Welcome to the board! Please don't feel that you don't fit in here. There are many of us on the board who don't have positive bloodwork or biopsies, who have nonetheless stopped eating gluten because we have figured out that it is what is causing our problems. My case is interesting in this respect: I had bloodwork and two biopsies that were all negative, yet my doctor diagnosed me with CD anyway. At that time there was not a lot known about non-celiac gluten sensitivity. So, honestly, I don't know which I have, but I do know that gluten is not by friend. I suspect that I have CD because I have a very high number of diagnosed first-degree relatives with CD. So you are very welcome here no matter what your diagnostic status. Here is a link to a podcast interview of a doctor who believes that no one should eat wheat. His interview is the second of the two that are on that podcast. I hope you find it informative. If you feel better being gluten-free, then maybe that is answer enough for you. We are here to help you, so don't be afraid to ask questions. _________________ Steph
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sleepmonger Joined: 09 Sep 2011 Posts: 4	Posted: Mon Sep 12, 2011 11:43 am    Post subject: Thank you! That does make me feel less crazy. I appreciate the words of welcome, and look forward to learning and participating in the forums.
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gfdfnj Joined: 12 May 2011 Posts: 57 Location: NJ	Posted: Mon Sep 12, 2011 1:16 pm    Post subject: Same here, I diagnosed myself with non-celiac gluten intolerance after my blood panel and gene test were both negative. Don't stop looking for a full and complete answer, but if you are feeling better on a gluten free diet, then keep with it. We accept everyone here because at some point we all didn't know what was wrong with us! (We do sometimes disagree on which particular product is best, but that is all in fun!) Welcome! _________ Jason Gluten Free / Dairy Free NJ
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sleepmonger Joined: 09 Sep 2011 Posts: 4	Posted: Mon Sep 12, 2011 2:54 pm    Post subject: Thanks Jason! (I'm in NJ too...north, Essex/Bergen co. What a cool blog you run!)
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gfdfnj Joined: 12 May 2011 Posts: 57 Location: NJ	Posted: Mon Sep 12, 2011 4:06 pm    Post subject: Thanks! Feel free to email me here or on the blog if you have Jersey specific questions . . . and I expect to see you at any one of the local support groups! _________ Jason
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Nuvia Joined: 13 Apr 2011 Posts: 66 Location: United Kingdom	Posted: Tue Sep 13, 2011 6:40 am    Post subject: Hey my bloodwork was negative too. The doctor didn't do an endoscopy on the grounds of that. I'm fairly convinced that I have CD, despite being diagnosed as Non celiac gluten intolerant. If you feel better off it then stay off it. There is no rulebook that says because you aren't diagnosed as having a problem with gluten that you Must eat it you may find later that there are hiccups - I found out a brand of cornflour I was using for the last month or so to thicken sauces and gravies was packed in a factory that also handles wheat products, although it's not labelled as such. That took some detective work, I can tell ya. I've been back and forth to the doctor with severe heartburn, stomach pains, exhaustion, skin rashes, moodiness, depression, breathing difficulties even. He said 'stress! anxiety!'. Found out about the cornflour, disposed of it and within a week am feel much improved. So yeah, just because a doctor doesn't say it's the problem, doesn't necessarily mean it's not the problem Pretty sure my doctor would have had me taking valium, anti depressants, tablets to sleep and tablets to wake up by now if I hadn't found the cause myself Enjoy the forum
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smalltownslackermom Joined: 04 May 2009 Posts: 720 Location: mid north american continent	Posted: Tue Sep 13, 2011 9:56 am    Post subject: Nuvia wrote: you may find later that there are hiccups - I found out a brand of cornflour I was using for the last month or so to thicken sauces and gravies was packed in a factory that also handles wheat products, although it's not labelled as such. That took some detective work, I can tell ya. I've been back and forth to the doctor with severe heartburn, stomach pains, exhaustion, skin rashes, moodiness, depression, breathing difficulties even. He said 'stress! anxiety!'. Found out about the cornflour, disposed of it and within a week am feel much improved. So yeah, just because a doctor doesn't say it's the problem, doesn't necessarily mean it's not the problem Amen. I was lucky that my gastro thought, based on my relatives dx'd with CD, he should do an endoscopy even though my blood tests were negative. My intestines were not heavily damaged but I had been truly GF for 5 or 6 months by then and have dermatitis herpetiformis too which was figured out after the biopsy. celiacs with DH tend to have negative bloodwork and less intestinal damage. I would have stayed GF regardless of the testing though because it was obviously working for me. _________________ son - high ttg - 4/09, pos. biopsy 5/09 self - negative bloodwork 5/09, pos. biopsy 11/09 sister - gf for ~3 years and is a new person niece - positive ttg 2/10, foregoing biopsy
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cruelshoes Joined: 23 Sep 2005 Posts: 4059 Location: Washington State	Posted: Tue Sep 13, 2011 10:58 am    Post subject: Regardless of what the tests say, if you feel better not eating it, then don't. There is no medical reason to eat gluten, and you can get a varied, healthy diet without it. _________________ -Colleen Diagnosed 8/05 via bloodwork and biopsy 11-YO son diagnosed 11/05 via bloodwork and biopsy
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pkitty Joined: 28 Jul 2010 Posts: 396	Posted: Tue Sep 13, 2011 8:48 pm    Post subject: cruelshoes wrote: Regardless of what the tests say, if you feel better not eating it, then don't. There is no medical reason to eat gluten, and you can get a varied, healthy diet without it. Agreed. My doctor even agreed with me that gluten isn't good for anyone and said everyone is allergic to it. We werent made for intense grains. _________________
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sleepmonger Joined: 09 Sep 2011 Posts: 4	Posted: Wed Sep 14, 2011 7:39 am    Post subject: Thanks, all. Even if I don't find a diagnosis, I feel more at ease at least knowing I'm doing my body a service by remaining GF.
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