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

Just Got Back From The Gi Dr. This Is What He Thinks.......


answerseeker

Recommended Posts

answerseeker Enthusiast

If you read my post the other day you will see the long struggle and long list of symptoms I've had. Had an appointment today with the same GI that did my endoscopy. He said that just because my bloodwork and biopsy were negative for celaic it doesn't mean that I don't have it. Could be not enough damaged done yet, especially since this started only about a month ago. Wow, perhaps I found a knowledgable doc huh? Even the foot cramps I get points to it because I have low calcium in my blood work. Also I'm still loosing weight. Today I'm down to 105. I have a ultrasound to rule out gallstones but he is really leaning towards celiac or non celaic gluten intolerance (I was shocked he actually knew what this was) he said even if it is IBS gluten still upsets that condition so still same treatment.

 

So he says gluten free diet trial for a month, if I improve then lifelong gluten free diet. If I don't then go back to see him.

 

on a sidenote, I thought oatmeal was naturally gluten free but I had the worst reaction to it the other day. I'm still not fully over it.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

If you read my post the other day you will see the long struggle and long list of symptoms I've had. Had an appointment today with the same GI that did my endoscopy. He said that just because my bloodwork and biopsy were negative for celaic it doesn't mean that I don't have it. Could be not enough damaged done yet, especially since this started only about a month ago. Wow, perhaps I found a knowledgable doc huh? Even the foot cramps I get points to it because I have low calcium in my blood work. Also I'm still loosing weight. Today I'm down to 105. I have a ultrasound to rule out gallstones but he is really leaning towards celiac or non celaic gluten intolerance (I was shocked he actually knew what this was) he said even if it is IBS gluten still upsets that condition so still same treatment.

 

So he says gluten free diet trial for a month, if I improve then lifelong gluten free diet. If I don't then go back to see him.

 

on a sidenote, I thought oatmeal was naturally gluten free but I had the worst reaction to it the other day. I'm still not fully over it.

 

 

It has to be gluten-free oatmeal.  It will say it on the package.  Oats use the same fields, farm equipment, silos, etc as wheat.  So unless the oats are certified gluten-free, don't eat it.

notme Experienced

good for you for finding a knowledgeable doc!  i was nearly dead from malnutrition when the light finally went off in my (family) doc's head.  3 years later and i feel like i'm still healing my guts, so good thing it has been caught before alot of damage has been done :)  

 

i still can't do oats, it seems.  tried them twice and have had no luck  :(  maybe try them again in......   january.....  so, some do well with it (I SURE MISS OATMEAL!) some don't.

 

good luck!  

dilettantesteph Collaborator

Something like 10% of celiacs react to the avenin in oats similarly to how they react to the gluten in wheat, barley and rye.  If you had a really bad reaction, you may be in this group.  If you try again, try just a little bit of gluten-free oats until you know that you can tolerate them.  I am in the oat sensitive group myself and I wish that someone had given me that advice.

answerseeker Enthusiast

Thanks. For now it's gluten free chexs or eggs for breakfast!

Archived

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

  • 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
      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
      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
      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
      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
      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.