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Heading To A New Gi Doc, Still Symptomatic.


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7 replies to this topic

#1 jeannieknits

 
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Posted 24 April 2012 - 02:47 PM

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!
  • 0
celiac/gluten intolerance diagnosed in July of 2010
hemochromatosis (genetic iron storage disorder) diagnosed at the same time. The two diseases have been linked in studies.

also have atrial fibrillation, and poor weight gain.
diagnosed with fibromyalgia 4/2011.

gluten free since july 2010.
investigating other food sensitivities daily!

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#2 sharilee

 
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Posted 24 April 2012 - 05:04 PM

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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Positive blood work July 2011
Negative Endoscopy August 2011
Positive Endoscopy February 23, 2012
Celiac Diagnosis February 23, 2012
Gluten Free since February 24, 2012


Shari

#3 jeannieknits

 
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Posted 24 April 2012 - 08:00 PM

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.
  • 0
celiac/gluten intolerance diagnosed in July of 2010
hemochromatosis (genetic iron storage disorder) diagnosed at the same time. The two diseases have been linked in studies.

also have atrial fibrillation, and poor weight gain.
diagnosed with fibromyalgia 4/2011.

gluten free since july 2010.
investigating other food sensitivities daily!

#4 ncallier

 
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Posted 26 April 2012 - 05:37 AM

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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English lady

#5 Bubba's Mom

 
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Posted 26 April 2012 - 07:00 AM

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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#6 sharilee

 
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Posted 26 April 2012 - 07:20 AM

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.
  • 0


Positive blood work July 2011
Negative Endoscopy August 2011
Positive Endoscopy February 23, 2012
Celiac Diagnosis February 23, 2012
Gluten Free since February 24, 2012


Shari

#7 jeannieknits

 
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Posted 26 April 2012 - 07:27 AM

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.
  • 0
celiac/gluten intolerance diagnosed in July of 2010
hemochromatosis (genetic iron storage disorder) diagnosed at the same time. The two diseases have been linked in studies.

also have atrial fibrillation, and poor weight gain.
diagnosed with fibromyalgia 4/2011.

gluten free since july 2010.
investigating other food sensitivities daily!

#8 jeannieknits

 
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Posted 15 May 2012 - 04:00 PM

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.....
  • 0
celiac/gluten intolerance diagnosed in July of 2010
hemochromatosis (genetic iron storage disorder) diagnosed at the same time. The two diseases have been linked in studies.

also have atrial fibrillation, and poor weight gain.
diagnosed with fibromyalgia 4/2011.

gluten free since july 2010.
investigating other food sensitivities daily!




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