Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Heading To A New Gi Doc, Still Symptomatic.

jeannieknits

By jeannieknits
in Doctors

Recommended Posts

jeannieknits Rookie
jeannieknits
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sharilee Rookie
sharilee
Posted

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.

jeannieknits Rookie
jeannieknits
Posted
  • Author

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.

ncallier Newbie
ncallier
Posted

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

Bubba's Mom Enthusiast
Bubba's Mom
Posted

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.

sharilee Rookie
sharilee
Posted

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.

jeannieknits Rookie
jeannieknits
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 3 weeks later...
jeannieknits Rookie
jeannieknits
Posted
  • Author

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.....

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note:...
    5. Scott Adams
      0

      Homemade Gluten-Free Egg Drop Soup

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,844
    • Most Online (within 30 mins)
      7,748
    donnawebb265
    Newest Member
    donnawebb265
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.