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TOPIC:   Awaiting testing results 


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DRAGONFLY02
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9/13/12 7:12 A

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Well, I got my referral from my physician and called the GI doctor to get in. The advantage of living in a large metropolitan area: I have access to a wide variety of doctors, including some of the best in the country. The disadvantage of living in a large metro area: the LONG waiting list to see top doctors. The GI doctor can't see me until the end of Nov. Now I have another 2.5 months wait. Oh well, fall goes by quickly at least.

So, do other people deal with frustrations of others who don't understand what eating GF is supposed to be? I had a co-worker bring me a magazine article about making a flakier pie crust by using vodka instead of water. The article said the vodka inhibits the gluten in the flour, in turn making it flaky instead of doughy. She tells me that now I can have pie if I make it with vodka. I tried to explain to her that it doesn't make the crust gluten free, it just keeps the gluten from making the crust doughy. She didn't get it, she kept trying to tell me that it was GF. I finally gave up trying to explain, it was nice of her to try and help too. Gee, if adding vodka was all we needed to be GF, we'd have a bunch of happy eaters, haha!

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FRUITBAT3
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9/1/12 3:14 P

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Fantastic news. Hope it's not too long a wait before your appointment. Good luck and let us know how you get on.
Rebecca

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DRAGONFLY02
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9/1/12 11:37 A

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Oh, I did call from work yesterday. Part of the reason why I couldn't do it before was because we're not allowed to make personal calls and my manager sits right next to me, so I couldn't do it when he was there. Yes, I agree health is important, but getting reprimanded, even for reasons of needing to call the doctor, aren't worth it. It leads to all sorts of other problems which then causes too much stress.

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FRUITBAT3
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8/31/12 11:59 P

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Dragonfly02, at the risk of sounding bossy - make the call! I know life is busy and we all have crazy lives at home but you need to look after yourself to function properly and meet the needs of all those relying on you (family, colleagues, friends etc). Take charge and call them on Tuesday if you can't do it today. You will get the wheels in motion and find out what you need to know to start living the rest of your life healthily. You deserve it.
Rebecca

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DRAGONFLY02
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8/31/12 7:57 A

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It's good that you got a diagnosis. And a GF diet definitely will help too. I keep forgetting to call for the referral. Things are always crazy as soon as I get home from work and then when things finally calm down and I start to think and remember, the office is closed! A lot of people are off at my work today, so I have a little more privacy, which will give me chance to call.

Have a great weekend!

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FRUITBAT3
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8/30/12 11:38 P

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I'm glad you have a diagnosis and can now clearly move forward. It seems like you have a great approach to your situation - taking control and responsibility. I'm sure you will make this work. Good luck
Rebecca

Edited by: FRUITBAT3 at: 8/30/2012 (23:38)
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POLITIGAL75
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8/30/12 2:22 P

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Since we've ruled out most other things. I've got an IBS diagnosis. I've got some guidelines, plus what I figure out causes problems along the way. I've got some pills that will cut back on the spasms, I get to up my fiber through citrucil and add a probiotic. Plus I'm avoiding all leafy greens, fresh fruit and veggies, plus no broccoli or cauliflower. At least until this round passes.

I feel like I've gained weight this past week. I need to start doing more activities and exercise so I can start losing weight again. Hopefully I'll feel better and can spend some time this weekend being more active.



Dance a little every day.

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DRAGONFLY02
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8/29/12 2:34 P

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Hopefully your GI doctor will be able to give you more insight into what is going on. I haven't made my appointment yet. When my doctor's office called, I couldn't remember or find the name of the GI doctor I want to see and I need fit or them to give me a referral, thanks to my insurance. They said I could call back when I found the name and then once I get the referral accepted, I can call the GI doctor for an appointment. If I don't forget or lets say, if my kids don't make me forget, I plan to call this afternoon when I get home from work. Bad thing is, Sept. is an extremely busy month for me and my family, so I'm not sure when I'll be able to get in to see the doctor, if there is even an opening in Sept. I may have to wait another month, which seems daunting, but I've gone this long, what's one more month.

I'm cutting back on my gluten again too. I was "experimenting" and eating it more lately, both to check on how it effects me and also because I've been reading that you need to be eating if for them to get a good diagnosis. But, I hate how I feel, plus I go on vacation next week for my 10th anniversary with my husband and I don't want to be walking around with a bloated stomach all the time, especially since we're going to a beach. And, eating pasta and bread again has caused me to gain a few pounds the past couple of weeks. I definitely won't be at my goal I wanted to get to before my trip, but I also don't want to gain before than either.

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POLITIGAL75
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8/28/12 12:17 P

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I heard back as well and they didn't find anything that would explain my symptoms. Happy there's no celiac, but I'd still like to feel better. I have another appointment with the GI later this week and guess I'll see what I learn from him. I'm still doing GF, though only truly on my second day. Super tired for some reason today. But overall my stomach is doing okay. So I'm definitely a happier camper.

How soon do you see the doctor?

Dance a little every day.

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DRAGONFLY02
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8/28/12 9:59 A

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I got a call from my doctor yesterday and my blood work came back negative. But I'm still unsure exactly what they did with the testing. My doctor does want me to see a GI doctor and will let me choose who I want to go to, so I'm planning on scheduling an appointment with the one I found that specializes in Celiacs. Part of me is thinking to just forget it and go GF on my own, but I know my husband would be more receptive to a diet change if I was actually diagnosed or at least put on a special diet by a doctor rather than just doing it on my own. I have been eating lots of bread lately just because I know it helps with diagnosis, but I'm hating the way I feel.

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POLITIGAL75
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8/27/12 2:36 P

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Being overweight doesn't seem to have the same immediate problems that something like diabetes would have, thus I haven't quite found myself focused on weight loss. I have in the past and am definitely improved, though as I haven't felt well, my activity level has dropped drastically. I miss the activities I used to do and I did feel better overall, though now it's hard to talk myself into doing much. It all wears me down so much quicker.

Weekend was fun, but busy. Hope yours went well also.

Dance a little every day.

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DRAGONFLY02
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8/24/12 3:07 P

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I can see just being overweight not changing habits, especially when I hear people say how much it hurts to exercise. But with things like gout where certain foods cause pain, I don't get why people would continue eating those foods Goes to show, people don't view things the same way.I guess extreme binge eating is like that as I know someone who binges and they say it hurts, but they can't stop eating. It's psychological.

Anyway, I do like my PCP a lot too. She really does great in listening and discussing things with me. I had to switch PCP's a few times before finding one I really like. So I'm hoping she will be willing to work with me on the whole GI doctor thing. And if so, I hope I like the GI doctor too.

Have a great weekend and safe travels as you go out of town.

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POLITIGAL75
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8/24/12 2:49 P

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I had planned on starting GF on Monday since I'm out of town this weekend, but after my roommate made GF pasta with dinner, figured I'd start now. Can't guarantee dinner tomorrow, but otherwise I'm hoping it shouldn't be an issue. But I'm so hungry already, it seems ridiculous. I'm going to need to bring some fruit and other snacks to the office next week.

Health problems I'd like to hope will prompt me to change my habits, though just being overweight hasn't. I had been trying to be better and exercise more, but with my stomach being fussy, I'm considering less active than I had been, though I've stayed within the same couple of pounds up and down, so I guess I shouldn't complain.

Finding a doctor you like and believe is important. I love my PCP, I haven't really met my GI enough to get a strong feeling for him. Mostly we met long enough to figure out what tests to run. But after that we should have something to go over I hope, even if it just is lifestyle changes.

Dance a little every day.

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DRAGONFLY02
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8/24/12 12:31 P

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I know, I don't get eating things that make you miserable either, but people do, which I think it why we have such a big health problem in this country. I see the same thing with my father-in-law who has diabetes and gout and he eats all the worst foods and then we have to listen to him complain about how miserable he is, plus his multiple trips to the hospital each year. He recently lost a couple toes, which you would think would scare him and change his eating, but he doesn't want to change. Not much anyone can do about it either, although I do get slightly annoyed with rising health care costs when I know that a simple change in diet and getting exercise would save tons of money. But that's a whole other political issue to not get into right now, haha.

I went to my PCP on Wednesday and they took some blood. I didn't really discuss things with her at the time as I wasn't aware of all the testing that can be done, so I'm sorta in a fog until I hear back with my test results. Whether they come back positive or negative, I'm going to request a referral to a GI specialist that I found in my area that heads up a Celiac Unit at a great local hospital. I don't want to be sent to just any specialist, so I did some research and found this guy is under my insurance. I learned my lesson several years ago with I let my former PCP refer me to a random surgeon for a knee injury. I was very unhappy and after talking to several people, I was able to find someone else to go to and thankfully my doctor gave me a referral for the other surgeon and I was much happier. If I'm able to, I now try to do my own research in order to find a good place to go for things. Anyway, being this GI doctor specialized in Celiacs, I'm hoping he can pinpoint my issues, whether I have Celiacs, allergies, or an intolerance. Or something else completely different.

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POLITIGAL75
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8/24/12 12:04 P

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Hi Dragonfly, nope. Not feeling you were calling me uninformed. emoticon Just felt that maybe I should clarify since I was sort of vague. I can't imagine someone eating things they know make them miserable on a regular basis. I had planned on starting a GF diet Monday, but it sort of started yesterday, so we shall see how it goes. It's amazing what you pick up when others have allergies.

Dragonfly, have you seen a doctor yet? I know that I've been ruling different things out for the past few months, so I'm getting kind of anxious to see about this last set of results. Guess we'll see what the GI doc says after those are done. But it definitely gets tiresome after not feeling well for a while.

Erin

Dance a little every day.

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DRAGONFLY02
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8/24/12 8:19 A

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POLITIGAL75, I definitely wasn't calling you "uninformed", I hope you don't think that emoticon, I just cut and pasted what I read in another thread in regards to having the testing done and the thread started out with saying don't start GF without knowing about it. Anyway, I do feel I some about GF eating too due to my mom being on a GF diet for years. I agree, having to worry about eliminating one more thing for your diet is daunting, especially with your nut allergy, but if it helps I agree it's worth it. My mom has met people who say they'd rather eat their gluten and live with the pain than change their diet. It gets frustrating, but we can't make other people change, they have to want it for themselves.

CINDYTW, good to know about the tax deduction. I didn't know about it and only recently heard about it. Too bad it has to be so difficult, leave it to the government to make it hard for us to keep more of our money! Probably the only ones who can easily document it are those that have a personal tax consultant to do the work for them and they're the ones who can afford it, right?

Since I'm only just starting to look into this whole Celiacs/gluten sensitivity/intolerance, I'm going to keep eating it for now. It's funny, the last few times I've had pasta and bread, I felt horrible soon after I started eating. Then last night I ate mac and cheese and a roll and I felt fine the rest of the evening. Ugh, I hate not knowing what's going on. I hope I figure something out soon.

Edited by: DRAGONFLY02 at: 8/24/2012 (08:22)
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CINDYTW
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8/24/12 1:02 A

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DRAGONFLY The tax deduction is not enough to be worth while for many of us. It is the difference between a regular bread and a GF, and you have to show the difference in receipts. It is also too time consuming for most people to document all grocery bills. For what few dollars it would save me is not at all worth the hassle.

Ad after testing has been exhausted, if you still suspect you have a gluten problem, there is NO reason not to try it. The ONLY reason is that the testing (except genetic) requires you to be eating it. And that is NOT 100%, only detects Celiacs and not the gluten sensitve/intolerant.

Cindy

"To get something you never had you have to do something you never did"



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POLITIGAL75
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8/23/12 5:50 P

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Hi Dragonfly, thanks for the information. I agree that it shouldn't be done without any doctor visits. I was debating starting GF since I'd already had an endoscope test for celiacs, I'm just waiting for the results. I wasn't sure if I was going to need a blood test in addition, but it doesn't sound like it. I have food allergies, plus am familiar with GF diets due to friends having Celiacs or gluten intolerance so I'm not really going into this uninformed.

I was considering it a test to see if I might be intolerant or sensitive to gluten, even if celiac's came back negative. I've got numerous other food allergies/sensitivities, so it seemed a logical option.

While I'd prefer not to add something else to watch for when cooking/eating out, removing gluten isn't a super thrilling prospect, especially since nuts seem to be a regular substitute which I'm allergic to. But the idea of continuing to feel so miserable prompts me to consider it as an option and while continuing to wait begins to feel like forever.

But I appreciate the comments from people here and on other threads. I am seriously considering my options before making any decisions.

Dance a little every day.

In PST (CA)




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DRAGONFLY02
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8/23/12 2:00 P

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I've been reading things on this Team's page and I had something else to add to your question about going GF now or waiting. If you go to the Topic : Investigating Gluten Intolerance or Celiacs under this Forum and then go to the last page and read the initial posting, it states this about getting tested and I thought I'd pass it on to you:

Do not "try out" a gluten-free diet yourself. First of all, you do not yet have enough knowledge at this point to really get rid of all gluten. Secondly, the healing process will start, and the screening and blood test results will be compromised. A first step with a doctor is to ask him to do the "Celiac blood screening antibody panel" (4 tests plus serum IgA) and have the blood sent to a reputable experienced national laboratory. The Endomysial (EMA) and the new Tissue Transglutaminase (tTg) are more specific and sensitive for CD. However, the "gold standard" of diagnosis is taking multiple (8-20) biopsies of the small intestine with an endoscope instrument, and later good results on a gluten-free diet.

(for reputable labs, visit www.glutenreactivity.net/ Be sure to read the first page and click the red box at the bottom to be able to "activate" links ... then find "Lab Charts" in the top menu.)

Both the antibody blood tests and the endoscope procedure should be done WHILE LIBERALLY INGESTING GLUTEN -containing foods. If you have been eating GF for awhile, the biopsy is worthless. It is likely to give a false negative. If you have been GF for awhile, opinions vary on the amount of time you must eat gluten again prior to testing (called a "challenge"); the length of time recommended varies from three weeks to three months. Some say you should be as sick as you were to begin with. So if you are now eating gluten, it is prudent to continue till you have the blood tests and biopsy especially since reactions to offending substances are likely to be far more severe after being GF for even a short while. Many celiacs who react too violently to the gluten to ever go back on it for the required time choose to live the celiac life and diet without the benefit of a biopsy.



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DRAGONFLY02
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8/23/12 11:07 A

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Hi! I am completely new to this Team and am just starting to be checked for Celiacs or some gluten-related problem (went to my PCP yesterday and had blood drawn), so I am certainly no expert at all. The only thing I can think of mentioning in terms of whether you should start a GF diet now or wait until diagnosed is that you can get a tax deduction for the food you buy if you have Celiacs disease. You do not need to show proof you have Celiacs when you submit your taxes, however if you get audited, you need a letter from your Dr. stating you have Celiacs and have to be on a GF diet for life. Here is the link on Celiac Disease Foundation website: http://celiac.org/index.php?option=com_content&view=article&id=116&Itemid=207 The reason I bring this up is my mom went on a GF diet for Rheumatoid Arthritis and her RA doctor suspects that she has Celiacs disease but she would have to go off the diet to be tested and she does not want to go through all that because it would be quite some time to get back to where she is now. But because she wasn't diagnosed, she is not eligible for the tax deduction. This is why I'm going through testing to see before I try a GF diet as the tax deduction would be a big help.

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POLITIGAL75
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8/17/12 11:50 A

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Hi Rebecca

Thanks. That's what I think I was looking for. Guess I skipped over the bloodwork part of things, though since they decided I needed a colonoscopy, guess they decided to do everything at once. Better than having to do the prep a second time.

I don't have an appointment scheduled yet. I was told to call in two weeks if I hadn't heard from them. Though historically, they are very quick to call with results, but this isn't my GP office. They'll schedule me once they have results depending on what they find I guess. Though I might check in with my GI dr office at a week and see if I can get my appointment scheduled.

Thanks for the info.

Dance a little every day.

In PST (CA)




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FRUITBAT3
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8/16/12 9:33 P

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The endoscopy is definitive. The blood test is a great indicator but the biopsy they do during the endoscopy is necessary for a firm diagnosis. Do you have a follow up appt booked with your GI dr? I always find that light pressure usually enables results and appts to be brought forward ( speaking as a health professional and a patient!) so don't feel shy about pushing for early appt and results.
Rebecca

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POLITIGAL75
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8/16/12 4:04 P

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Thanks for the responses. I guess I wasn't sure if the endoscopy is the final test or if I need a blood test as well.

I was hoping for a quicker response that a few weeks, but I suppose that's normal that I'm feeling impatient by this time.

I'll let you know what I learn and start checking out some of the recipes. It'll take some planning to go GF.

Erin

Dance a little every day.

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FRUITBAT3
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8/16/12 3:04 P

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I got the biopsy results after a couple of weeks. The GI dr who performed it though had said he could see the damage whilst performing the endoscopy and told me to start gf diet straight away. If you have had all the tests done then there is no reason to hold off if you want to do a trial of how the gf diet effects you. If the results say you have CD then you'll be a couple of weeks ahead and if it isn't then you have already started the process to see if eliminating gluten makes you feel better. There are lots of people who find they are much better without that pesky gluten even if they don't have CD.
Best of luck and let us know how you get on.
Rebecca

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CINDYTW
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8/15/12 9:44 P

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I got the blood test and never went for the endoscopy, it would have been too painful for me to go back on. Now that you have the hard part out of the way, you have nothing to lose by trying a GF diet. You DO need to be eating gluten to be blood tested as well, but there really is not much point. The only treatment for intolerance and Celiac is a GF diet. There are a lot of the same symptoms, just intolerant folks aren't damaged internally...YET. They still could be later.

Edited by: CINDYTW at: 8/15/2012 (21:44)
Cindy

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POLITIGAL75
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8/15/12 4:38 P

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After dealing with numerous health problems, one of the things they are testing me for is celiac's. I underwent an endoscopy and colonoscopy yesterday, and am now waiting for the results. The more I read up on celiac's symptoms, the more of the issues I face seem be in there. While it's not a guarantee, it definitely seems like a strong possibility.

How long did people take to get results, and did you start going GF while waiting for results or after results? I've never tried a GF diet, but I've also never had bloodwork done for it. I don't want to try GF and potentially have to go back on.

Does gluten intolerance have the same symptoms but without the intestinal damage?

Thanks.
Erin

Dance a little every day.

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