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Dr. Appt Tomorrow!
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Miss impatient me, moves my doctor's appointment up from 9/3 to tomorrow. This is the follow up to all the tests I've had and I'm so loaded with questions, I'm going to have to write them down. I haven't spoken with the doctor about the positive antibodies yet, so I'm just curious what he recommends.. if he even mentions going gluten-free. I'm planning to anyway irregardless what he says... just trying to rule out some things first... like Crohn's... oh, I hope I don't have that.

With the tTg negative, I don't see a point in a biopsy.... am I mistaken?

In the meantime, I joined the Gluten Intolerance Group here in Richmond. :D

Gretchen

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Don't sweat the diagnosis. Any Gastroenterologist worth his/her salt will tell you Crohn's and Colitis diagnosis are very difficult. Even when a diagnosis is positive, it's not always concrete. My situation went that way. From a Crohns diagnosis, (maybe) to Colitis, to complete limbo. The only thing that has seemed to help is a gluten free diet.

Bottom line is, there is a way to deal with just about anything. Reading medical journals on the effect of Crohn's will scare the bejesus out of you, but it's not always so bad.

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Thank you, Paul. I'll ask the doc to run for the gene and other food intolerances, just so I know. I really do think it's important to go through the "rule-out" stage, as there can be so many other disorders that can have similar symptoms to celiac.

... who's to say that the inflamation in UC & Crohn''s isn't due to gluten, anyway?? It's an obvious display of irritation, you know? I have heard that many who have IBD benefit from going gluten-free.

In any case, thank you again Paul. I'm glad to see you're on the board and that you're another who's better w/out gluten!

Gretchen

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Back from the appointment! He read me all of my test results, which I had never had a doctor do before.... so that pretty neat. He told me I have Gilbert's syndrome (from the high ind bilirubin) and then regarding the celiac, since the most specific test is the tTg and that is negative that I probably don't have celiac. I asked him if he knew what the tTg indicated, and he didn't know... so I kinda explained it. Being that I'm not full-blown, I told him that the neg result wasn't a surprise. He said I could always try the gluten-free diet for a few weeks and gave me some info. He said that I probably have IBS and that he could treat that for a couple of weeks, to see if I feel better... um, I told him I thought that IBS was a ridiculous diagnosis and he admitted that doctors group the "I don't know's" there. I know what's wrong, I'm having an autoimmune reaction to gluten, so I don't consider IBS my diagnosis (anymore). I told him I'll go gluten-free strickly for the fact that I'm intolerant and didn't want to be treated with medicines that treat symptoms and not the cause. He said good luck with the diet, come back if you'd like or ever need. Then sent me on my merry way. At least he gave me the info and said I could always try the gluten-free diet! He was a nice guy, he just didn't know as much as we do :P

The Gluten Intolerance Group recommend a doctor at one of our leading hospitals.. he's a GI spec, head of nutrition at the hospital and apparently his wife has celiac. I didn't realize (until know) how much important having a doctor who knows about celiac is. I think I'll make an appointment just to talk with him.

Oh.. just found out that my pastor's wife is gluten intolerant and she's gluten-free. That was a pretty neat discussion last night during our pre-marital counseling!

Gretchen

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Just got a negative test result yesterday, but had decided to go gluten-free starting the day after the test. I really am feeling better generally, but still have tenderness in the tummy with constipation. How long do you think it will take for that to go away? My granddaughter has celiac disease so I have been cooking for her/eating out with her for five years. She is amazing (6 years old). She was SO SICK when she got diagnosed, a clear case of celiac disease. I actually hoped that I was gluten intolerant because it would explain all of my discomfort, now I have to keep wondering and poking around to find out. My doctor sure isn't being much help, I don't think he understands this. I also have fibromyalgia and have read various places that there can be a link with gluten intolerance there. He REALLY didn't want to hear that. I think he thinks I am a hypocondriac, I don't think so, I think I just read a lot and am trying to figure out why I hurt so much. Barbara from Northern Wisconsin

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Barbara,

What were your test results? Did you get the entire celiac profile or just one test? If just one, which one?

Gretchen

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If you are just gluten intorlerant and not Celiac, it could take quite a while for the diet to work. I've found in my case, the diet helps a lot right away, but it takes some time for symptoms to completely go away (or so the theory goes). I actually have never gotten completely better, but have never been Gluten Free for more than a month. I'm hoping that after 6 months or more of being Gluten Free, that I will have no symptoms anymore.

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Thanks for caring, Gretchen.......I have no idea what test was performed. It was a blood test and only one. They took two tubes of blood, but one was a sed-rate/something to do with the fibromyalgia, which by the way, I didn't even ask for. What do you think I should do now? I had decided to continue eating gluten free and after reading some posts on today's message boards about symptomes of other people/going to continue for sure. My DDIL, who is the mother of my little granddaughter who has celiac, was the one who insisted on this test for me and my mother who has lots of gastro problems. Barbara

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Barbara,

Perhaps this will help (see link below)... it's general information about the tests that a doctor runs with a celiac profile. It usually consist of about 5 tests. See if you can call your doctor and find out what test was negative. Even if you're not celiac, does not mean you're not gluten intolerant... of which needs the same treatment. My antigliadin is the only indication for me so far.

But, I must say.. despite what the medical field says about your tests... I truly think we know our bodies best.

Gretchen

http://www.labtestsonline.org/understandin...sease/test.html

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Gretchen: I just read your post describing your doctor visit. GOOD FOR YOU for not letting that doctor label you with IBS and try to treat those 'IBS' symptoms with another drug with possibly terrible side effects!!!! :D I'm impressed that you got him to admit the 'IBS' diagnosis was really just a catch all category for all the 'I don't know's. Someone on this board called IBS an abbreviation for "I Be Stumped". :lol: Thanks also for posting all that info about what all the celiac tests mean. I did Enterolab tests which use stool samples, rather than blood, but I appreciate the explanation of blood and biopsy tests. Thanks. :)

BURDEE

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That's great that he is supportive of you starting the gluten-free diet even without the blood results showing it.

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It is a shame that we have to educate our doctors, but I can understand that they're busy and treatment is more their speciality than prevention. Like I want an antidepressant for IBS!! I'm tired as it is!! I also read an article in the New York Post (that was in his office) about them using worms (in the intestines) as treatment for IBS. Apparently patients with this treatment improve significantly. Ohhh.. that's not for me!... I'd probably pass out from the thought of it. The worms probably like to eat gluten, that's why the IBS symptoms subside! Ummm... I think a diet is a better and more healthy option! Hahaha!

Gretchen

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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! 
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    • 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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