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

Borderline Celiac?

livinthelife

Recommended Posts

livinthelife Apprentice
livinthelife
Posted

I have been struggling with ongoing gastro troubles off and on for a long time. I thought they were "just a part of life" until last summer a year ago when I got a parasite on vacation. I took several rounds of antibiotics but never fully recovered. The other three who got sick took meds and were well quickly. Doc did a celiac panel which was negative and a barium CT scan which showed nothing in January. I took even more antibiotics, which seemed to help a little Fast forward to August. 

 

Again, like last fall, I had accidents in the car, in the middle of the night, and uncontrollable problems, as I'm sure most of you are familiar with. I had a slight reprieve in symptoms for a few months and then they came back with a vengeance. All of the sudden I was having accidents again and losing weight without trying. I also have no energy. Hair loss, dry skin...so many things I've since read on this forum.

 

GP referred me to new gastro doc who did a colonoscopy. Found a polyp (had other polyps  eight years ago, none three years ago - have colonoscopy every five years due to personal and family history) and a tremendous amount of ileal villous blunting. He told me the biopsy presented celiac but that he needed to do an endoscopy to be 100% sure. Those results didn't show blunting but did show inflammation. He said I have "borderline celiac" and is redoing blood work just to make sure. Also, he wants me to go gluten-free for a month or two and says he's pretty sure I'll feel so much better.

 

Does this sound familiar to anyone? 

 

By the way, thanks to everyone who posts here. I am learning so very much!

 

 

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

There really is no borderline celiac - you either have it or you don't. That "borderline" talk probably refers to the degree of damage found. Some celiacs have a great deal of damage and others just have patchy. It is thought by some that early celiac (in the first few years) often results in patchier and less severe damage and the complete villus atrophy occurs in cases that have gone undiagnosed longer.  

 

I mostly agree with that but want to stress that not all celiacs experience the disease in the same way. Some celiacs only have one type of positive autoantibodies, some have all positive, some have all negative yet have a positive endoscopic biopsy, and yet others have a negative biopsy with positive blood tests.... There's a lot of variation.

 

If you are having the endoscopic biopsy, make sure you continue to eat gluten until the test is done or it will most likely give a negative result.  You might want to consider trying the blood tests again as autoantibody levels can fluctuate and might register on the blood test now. The tests to request are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (and older and less reliable tets)

 

Good luck with the tests and with going gluten-free afterwards.  I hope you feel much better soon.

JustCricket Newbie
JustCricket
Posted

I couldn't agree more with nvsmom. I think she's completely right about what the doc meant by "borderline." Hopefully, you've caught the illness early and have avoided a lot of issues. I hope you feel better soon! :)

livinthelife Apprentice
livinthelife
Posted
  • Author

I couldn't agree more with nvsmom. I think she's completely right about what the doc meant by "borderline." Hopefully, you've caught the illness early and have avoided a lot of issues. I hope you feel better soon! :)

Thank you both for your replies. I just got through with more blood work and am officially going gluten free! Wish me luck!! 

 

Has anyone ever heard of blunted villi "classic celiac" in the ileum from a colonoscopy biopsy and only inflammation in the duodenum with the endoscopy? The more I read, the more I realize how atypical so many people's are. I just hope I feel better QUICKLY!!

mommida Enthusiast
mommida
Posted

Celiac is mostly diagnosed from the blood panel and endoscopy with biopsy (of the small intestine not not the colon).

 

Keep a food journal.  It can help find "hidden" gluten.  (yes, that small splash of soy sauce is gluten.)  It can help find areas of cross contamination.  (Switching to gluten free I kept a bottle of vanilla from the "gluten days" that must have been contaminated. ~ the note taking helped me track it down.

 

It is possible that you will have other food sensitivities.  (if the villi in your small intestine are damaged, you may have problems with dairy as the tip of the villi is involved with digesting dairy.)

 

Get a copy of ALL your testing reports.  It will be handy to see a report of all the damage.  (my daughter has had many endoscopies with biopy for Celiac and Eosinophilic Esophagitis.  Since these are the main reason for the scoping, invariably the doctor neglects to mention the signs of chronic gastritus at the top of the stomach.  That is important to me to stay consistant with the symptoms she tells me.  It has caused her pain and only the written report told me why.

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.