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Heading To A New Gi Doc, Still Symptomatic.
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I haven't posted in a while, but it seems as though I'm right back where I started. I've been strictly following the gluten-free diet since Summer 2010, with only a few cross contaminations, and the occasional (maybe twice?) purposeful "cheat". Yet I can't seem to eat anything that doesn't feel like I've just swallowed a bag of rocks as they make their way through my digestive tract. I'm only able to tolerate two or three forkfuls of food and then the pain is just too much. Then I'm either constipated for 4-5 days, followed by 3-4 days of diarrhea. Slowly dropping weight, hating food again and wanting to sleep all the time. I can't for the life of me figure out what is doing it.

I'm 99% dairy free, I only drink one cup of caffeine a day, I've eliminated alcohol (but was only drinking 1-2 times a week, and not a lot). I don't do soy. I'm banging my head against the wall.

My original GI doc was the one who "caught" the hemochromatosis (iron overload) dx and then pretty much washed his hands of me, saying that once I was de-ironed (which I'm nearly) I will return to normal....that is that my GI tract will miraculously be healed. Yeah right. So I am heading to a new gastroenterologist in a few weeks and I'm sure she'll order up a bunch of tests, hopefully with an answer at the end of all of it.

Any opinions would be fantastic.

thanks!

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Hope the doctor can give you answers. I was diagnosed myself with celiac two months ago and I am still having symptoms despite being gluten free. Next I tried eliminating lactose, still having issues. Now I am eliminating soy, caesin and eating only naturally gluten free foods. So I am hoping this works. Hang in there, hopefully soon you will have answers.

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Hope the doctor can give you answers. I was diagnosed myself with celiac two months ago and I am still having symptoms despite being gluten free. Next I tried eliminating lactose, still having issues. Now I am eliminating soy, caesin and eating only naturally gluten free foods. So I am hoping this works. Hang in there, hopefully soon you will have answers.

thank you, and good luck to you as well.

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Hope the doctor can give you answers. I was diagnosed myself with celiac two months ago and I am still having symptoms despite being gluten free. Next I tried eliminating lactose, still having issues. Now I am eliminating soy, caesin and eating only naturally gluten free foods. So I am hoping this works. Hang in there, hopefully soon you will have answers.

Sharilee,

You and I are in the same boat. I was diagnosed in late February. Immediately went totally gluten free with only a few suspected cross-contaminations. My symptoms immediately were alleviated but have come back with a vengeance. I now look 6 mos. pregnant rather than just 5 mos. The rash has spread and worsened, and the bathroom problems are back. I have toyed with eliminating lactose; however, I only use about 3 T. of skim milk in my decaffeinated coffee daily. Like you, I am going back to whole naturally gluten free foods. Please keep me up to date on your progress--maybe I can learn from your experiences. I surely hope you get better soon (and me, too)!

Natalie

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I haven't posted in a while, but it seems as though I'm right back where I started. I've been strictly following the gluten-free diet since Summer 2010, with only a few cross contaminations, and the occasional (maybe twice?) purposeful "cheat". Yet I can't seem to eat anything that doesn't feel like I've just swallowed a bag of rocks as they make their way through my digestive tract. I'm only able to tolerate two or three forkfuls of food and then the pain is just too much. Then I'm either constipated for 4-5 days, followed by 3-4 days of diarrhea. Slowly dropping weight, hating food again and wanting to sleep all the time. I can't for the life of me figure out what is doing it.

I'm 99% dairy free, I only drink one cup of caffeine a day, I've eliminated alcohol (but was only drinking 1-2 times a week, and not a lot). I don't do soy. I'm banging my head against the wall.

My original GI doc was the one who "caught" the hemochromatosis (iron overload) dx and then pretty much washed his hands of me, saying that once I was de-ironed (which I'm nearly) I will return to normal....that is that my GI tract will miraculously be healed. Yeah right. So I am heading to a new gastroenterologist in a few weeks and I'm sure she'll order up a bunch of tests, hopefully with an answer at the end of all of it.

Any opinions would be fantastic.

thanks!

Some of us react to the very small amount of gluten in processed gluten-free foods. You may fall into that group..or you may have another food intolerance?

It's really frustrating to give up foods and think you're adhering to the diet, and still not feel good!

May I suggest you keep a log of what you eat (including brands) and note any symptoms you have? Many food reactions are delayed, so if there's another food in question the log will help figure it out.

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Sharilee,

You and I are in the same boat. I was diagnosed in late February. Immediately went totally gluten free with only a few suspected cross-contaminations. My symptoms immediately were alleviated but have come back with a vengeance. I now look 6 mos. pregnant rather than just 5 mos. The rash has spread and worsened, and the bathroom problems are back. I have toyed with eliminating lactose; however, I only use about 3 T. of skim milk in my decaffeinated coffee daily. Like you, I am going back to whole naturally gluten free foods. Please keep me up to date on your progress--maybe I can learn from your experiences. I surely hope you get better soon (and me, too)!

Natalie

Hi Natalie,

Hope you get better soon! I am on day two of not eating anything with caesin, lactose, soy, etc and only naturally gluten free foods. Yesterday was terrible, one of the worse days since being diagnosed with celiac. Today still experiencing symptoms but not as severe or frequent. So hopefully that is a good sign. I told my husband last night I am sick of being sick and not feeling well. I want to feel normal again.

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Some of us react to the very small amount of gluten in processed gluten-free foods. You may fall into that group..or you may have another food intolerance?

It's really frustrating to give up foods and think you're adhering to the diet, and still not feel good!

May I suggest you keep a log of what you eat (including brands) and note any symptoms you have? Many food reactions are delayed, so if there's another food in question the log will help figure it out.

I recently started keeping a food journal, so hopefully that will help, although it even feels like water starts a chain reaction of pain. I was wondering about the "delayed reaction" thing, because sometimes it feels like if I've eaten something, I have the bowel issue 2 or 3 days later. Almost like I can 'trace' it's path, if you know what I mean.

I'm also trying to follow the FODMAP diet...which is prescribed for IBS. if you google it you can see that it limits certain sugars, etc. hoping that will help.

Jeannie.

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UPDATE:

so I had my appointment with the new gastro doc, and it was, I guess uneventful.

She seems mystified about what is causing the pain, as I am. I am going for an ultrasound of my gallbladder/liver this week and then an endoscopy in June, although that would be to really just check for an ulcer or stomach damage as she didn't expect to see any celiac evidence as I've been gluten free for so long.

As I suspected, I've lost weight (5 lbs.) which was not good news, and she didn't really have any suggestions/medications/ideas until we see what's going on after the tests.

so, we'll see.....

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
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