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I just wanted to say hi. I'm sure you all have stories to tell in getting diagnosed and here is mine. I've had stomach problems and diarrhea for 8 years. I've seen my doctor a few times for them and first it was a lactose intolerance (which I'm not sure I have) and then he finally decided I have ibs. Two weeks ago he ran some blood tests for celiac and they came back "normal" and he said I don't have it. However..... when he mentioned that we were testing for celiac disease I went on the internet and read about it and immediately went gluten-free.

By the time the tests came back all my symptoms were gone, no diarrhea, no noisy stomach, and I'm eating milk products with no symptoms (which is why I don't think I'm lactose intolerant). When I told my doctor this he said, go back on gluten products it has nothing to do with it. Well, two days ago I mistakenly ate a little bit of gluten and my belly was all upset again (along with other symptoms).

I'm going to get some further testing at that Entrolab in Tx. and see what they can tell me but for now this is where I stand, my Dr. won't even give me a referral to another doctor (i'm in an HMO and can't see anyone with his referral) as he said based on this one blood test, that I'm fine and that its in my head. (wrong end!)

Its frustrating but I know that the gluten is not working for me.

I'm a single mom on Cape Cod (not a lot of doctors) and I just thought I'd say hi and that I look forward to learning a lot more about this.

Susan

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:D welcome susan------your story sounds so much like so many others of us--i too was told IBS, spastic colin and the best one--too much stress and to keep the stress away :blink: only an idiot would say something that stupid-----anyways--i went almost 20 years before finding out about celiacs and i do not need a doctor to tell me that gluten is my problem and a gluten free diet can not hurt you, especially when we know the gluten does--once again, welcome :D and feel free to email me at my aol addy if you want---deb ;)
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Hello Susan,

my tests were negativ, because i did the same thing you did. I made research and found out about celiac disease and started to cut out the gluten in my food. When the doctor wanted to make some blood tests i told him, that i'm worried, that the blood tests wont show anything, because i already started the glutenfree diet. He replied, no, that should be ok. Well, of course the blood tests were negativ then. But i feel perfect when i eat glutenfree. And he said, well, that's pretty strange, but when i feel better with glutenfree food i should just go on eating that and come back in about 3 month. And he said, if i'm feeling better after eating glutenfree food, that's as good as a diagnosis in his eyes. And that was it. I feel so much better since i'm on a glutenfree diet, that i never want go back to eat gluten again. I cut the gluten out since July this year. But i would like to make this test in Texas too.

I think, you don't need positiv tests to know, that you feel better on a glutenfree diet.

That is just my opinion here. Lots of greetings, Stef

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Hey there pixiegirl......a similar story here, negative blood test, so I did the complete test with Enterolab including gene testing. Came back gluten and casein intolerant and I had been eating gluten-free already. They are wonderful. The test in non-invasive and the results came back in less than two weeks although they ask you to be patient for 3-4 weeks. I was very pleased with Enterolab. They send you the results via email. My granddaughter who is now 6 has had celiac disease for 5 years and we always wondered where she got it from as it is highly heriditery...now we know. I am feeling much better too, although I wanted going gluten-free to cure my fibromyalgia and it hasn't done that yet. Darn. Best wishes, do the Enterolab thing for sure. Barbara

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Hi!

I'll start by welcoming you to the forum!! There is a great bunch of people here who are really supportive, knowledgeable, and helpful......

My story is a bit different from yours, my bloodwork and biopsy showed without a doubt that I had celiac, but from all the posts I have read here, it is not uncommon at all that the bloodwork came back negative. I would also recommend to you that you to the Enterlab testing, I have heard nothing but wonderful things about them....

Good Luck and Welcome!

Karen

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Welcome@!!!

This is a great message board and it is really hard for me to do my HW when I am posting on this board. LOL wow if you have any questions you can e-mail me, i have been living with celiac disease for 13 years, all my life

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    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      St Johns Wort daily.
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      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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