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Hello everyone. I have never been tested or anything for Celiac deisease or wheat/gluten intolerence or any allergy. I am thinking about doing some kind of test though. I have noticed (especially recently) that whenever I eat carbs or anything with wheat and such I get bloated and crampy. I've also seen bloody stools..I know gross and possibly too much info...sorry! I also can't get enough sleep the night after eating stuff like that either, like yesterday I gave in and ate a bunch of breads and junk foods because I have been working out alot in the gym trying to tone up and slim down a bit (I've been doing a low carb diet sort of thing and was feeling pretty good). I slept about 12 hours lastnight, and I still feel cramps lower than where my tummy is, because I get the cramped feeling slightly in my stomach immediately after eating some things but not enough to cause any kind of real pain. I hate getting gassy after eating some foods..mostly carb related, and most carbs have wheat or gluten in them somewhere I've noticed. and I always feel really bloated in my tummy area, and it's hard to lose weight! even as I am SLOWLY losing ounces here and there and dropping body fat by working out so hard, I haven't lost any inches, and even gained in my tummy area which was really disappointing. I'd like to hear any thoughts from anyone about this. A few weeks ago I even went to Barne's and Nobles to check out diet books and flipped through a gluten free diet book...but ended up going with atkins because it worked for me a few years back.

All of this is just really new to me. I have been looking at some home collection kits that you can mail in to labs and some that even process at home (like the one I found on this site actually through optimum health resource labs) and you can see results in 10 minutes. Maybe this would let me know if I am intolerant to gluten? My Dr. is an imbisil and I don't want to waste my time going to him because he doesn't listen to me. I am hypothyroid and have been officially diaganosed with that since 2005. With my current Dr. I had to go back 3 differenttimes to figure out why I was so completely tired all the time and finally found out i was in recovery from mono back in february, they took so long they missed me being in the active stage of it when i was complaining of sleeping so much. *sigh* I just wish Dr.'s would listen when a patient knows something isn't right with their bodies and take appropriate actions to help. They are so concernced with making money they could care less if someone is sick or needs help. (excuse my rant!)

I'll leave my long post to that for now. I'd really appreciate any inpuit that anyone could give me!!

Thanks so much,

Sara :-)

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I forgot to add that I have on and off anemia and I also found out about a Vit. D deficiency when I found out about the mono. Come to find out I was tested for that last year and was supposed to be taking 1,000 IU daily since then and was NEVER told until I asked to be tested for D deficiency because in some people it makes you tired. So I had to get a script for 50,000 IU to take once a week for a month and now just once a month.

It's hard to find a good Dr that accepts Tricare.... Anyone know of any good ones in Central VA???

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It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.

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It is good that you are trying to find answers. If you are going to be tested then you must continue eating gluten everyday in order to have more accurate results. Symptoms to eating gluten when you have Celiac Disease suck. They can include long tummy aches and needing constant sleep. Sorry to hear your doctor is crap. Hopefully you can find another!

Look around on the board and you'll find lots of good information on yummie foods, dieting, and other symptoms.

thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.

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thanks for writing! I haven't gotten any feedback from anyone yet on here... I will search more for a good Dr. or recommendations.

Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.

Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.

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Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten.

Do as mentioned check out other posts on the board and feel free to post any questions you may have. Celiac can be hard to diagnose and even if your tests are negative you should give the diet a shot after testing is finished.

Ravenwoodglass,

I just now saw that you wrote on here :-). I just sent you a message! A lot has gone on since I originally wrote this post. I have had negative blood tests for Celiac, but it was positive for Hashimoto's Thyroiditis. Stool and gene panel from EnteroLab dx'd me as having active gluten sensitivity that can be more severe due to a double copy of a gluten sensitivity gene (HLA-DQB1 Molecular analysis, Allele 1 0602 and HLA-DQB1 Molecular analysis, Allele 2 0602....Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) ), and immunologic reaction to casein as well as gluten. I do not have either of the two classic "celiac" genes but after reading many of people's stories, those aren't needed to develop Celiac...

I'm still searching and learning, trying to see what is what and trying to figure out the gluten-free diet and see if I can find a dr to retest me for celiac and such. I'm not sure that I'm negative for real. I had the same voice in my head telling me something wasn't right when I set out years ago for my thyroid problem, and it took me 7 years to get my autoimmune dx for that! I didn't give up because I know my body and knew something wasn't right.

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    • 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:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      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.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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