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

Sanity Check - Diagnosis Of 'early Celiac'

ragtag

Recommended Posts

ragtag Rookie
ragtag
Posted

Hello everyone,

 

I'd just like to get the opinions of some people who have dealt with celiac. I have been feeling off for years, the first complaint that might be celiac related that I went to the doctor for was 7 or 8 years ago - brain fog, feeling out of it. This persisted but a few years ago, I had a total physical meltdown and developed such extreme fatigue that my life became absurdly difficult. I would fall asleep on the way to and from work, standing up, you name it. Weekends were spent sleeping 12-14 hrs a day. I was tested for lupus and thyroid issues as well as general blood work but everything came back normal aside from a constant low grade fever and slightly high white blood cells. In addition to the fatigue, I lost half of my hair, had strange rashes, petechaie and deep fingernail ridges. I was given antidepressants and everything was chalked up to anxiety/depression.

Energy levels gradually improved but on a whim I decided to add a vitamin D test to the panel I have done through my workplace every year. My vitamin D levels were barely detectable. My doctor has had me supplementing with 50,000 units weekly and the highest level I've reached has been 18.

This past fall, I began experiencing chronic diarrhea which has now become a daily thing. I can't remember the last time I had a normal bowel movement. However, there is no pain or blood.

I had to switch to a new primary care doctor and the detailed history she took combined with the diarrhea lead her to test for celiac. The test for IGA deficiency came back normal and my TTG levels were 17 on a scale where anything over 10 is considered positive. I was told to continue eating gluten and come back for a biopsy. After the procedure, the doctor noted that she saw areas of nodularity as well as flattening in the lining of the duodenum which she said could indicate celiac. Here is the report from pathology, indicating that the villi are intact but that intraepithelial lymphocytosis was found:

 

 

 

FINAL DIAGNOSIS:
 
A) Duodenal biopsy:
- Duodenal mucosa including Brunner glands showing focally increased
intraepithelial
lymphocytosis not associated with villous atrophy, see NOTE.
- No granulomas, ova or parasites, atrophy, chronic or active
inflammatory infiltrates in
lamina propria, or neoplasm identified.
 
 
NOTE: The finding of increased increased intraepithelial
lymphocytosis on H&E and CD3 stains on blocks A1 and A2 is not
specific. The lymphocytosis can be seen in association with
gastritis and can also be seen with celiac disease which has been
treated or may represent a less than fully developed expression of
celiac disease in an area of minimal involvement. Clinical
correlation is suggested and correlation is serologic testing if
this is available.

 

So, my doctor is thinking it's 'early celiac' and has told me to switch to a gluten free diet (which I have) and see how I feel after a few months. I'm just worried because I thought that TTG would not be positive unless there's a fair amount of damage, so I'm concerned that the damage is elsewhere or not due to celiac. Is it possible that the changes that the pathologist found could cause the positive TTG, diarrhea and other issues I'm experiencing? I'm just concerned because it seems like my symptoms and blood test results are out of proportion with the pathologists findings. I've expressed this concern to my doctor and she stated that since celiac is so patchy, there is often less damage indicated in the biopsy than the blood test since they can miss more affected areas.

 

What do you all think? Would you pursue any additional testing at this point in addition to going gluten free? Thanks in advance for any advice or reflection you can offer. :)

 

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I don't know how many samples they took.  The damage is usually sort of patchy.  The whole small intestine doesn't have to be ruined to give you issues.  Its quite possible they missed the really bad spots. 

ragtag Rookie
ragtag
Posted
  • Author

I believe they took 8 samples...

kareng Grand Master
kareng
Posted

I believe they took 8 samples...

And the samples are less than a centimeter and you have 16-20 feet of small intestines. Not very small, are they? :)

IrishHeart Veteran
IrishHeart
Posted

It would be enough for me to think I have celiac.

Your doctor is correct (and this is not easy for me to say, given my track record with

doctors )

 

The term "early celiac" is explained in several celiac articles and: 

 

(1)You have a positive TTG  

 

(2) and your biopsy result is  "suggestive if correlation is in serological testing"

 

 

Welcome to the family.. :)  what can we do to help?

 

 

my TTG levels were 17 on a scale where anything over 10 is considered positive\

 

 

 

and this  "can also be seen with celiac disease which has been
treated or may represent a less than fully developed expression of
celiac disease in an area of minimal involvement. Clinical
correlation is suggested and correlation is serologic testing if
this is available".
ragtag Rookie
ragtag
Posted
  • Author

Yes, I just checked the report and the samples were 0.1-0.3 cm in size, and with several yards of small intestine that is indeed a tiny portion represented. At this point I guess I just have to proceed as celiac is the only problem and reevaluate if my symptoms persist. I'm not looking for a reason to deny celiac, rather I'm relieved to know that I've figured out what has been wrong for so long and now have the opportunity to heal. I'm just very scared that something else is amiss, but I suspect that once I start to feel better and my symptoms start to fade, I won't need much convincing.

Thanks so much, everyone! I'm so happy to have this forum and all its knowledge and support behind me as I start this healing process. :)

  • 3 months later...
ragtag Rookie
ragtag
Posted
  • Author

Thanks so much to those of you who responded a few months ago!  :)

 

I just figured I'd provide an update. I've been gluten free since my biopsy and many of my symptoms have resolved, especially the digestive issues I was having. I'm still working on bringing up vitamin levels, but I got some great news a few days ago. A follow up test on my TTG levels showed results in the negative range! I've been super vigilant about following the diet and avoiding cross-contamination, and it's great to know that all that work is helping with my healing. 

 

Thanks again, it's so great to be able to look to this resource and get help and advice from those in the same boat!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Congratulations!!!! :)

mommy2krj Explorer
mommy2krj
Posted

That is wonderful! I'm glad you are starting to feel better and are on the road to recovery. :)

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. Flash1970
      - Flash1970 commented on Scott Adams's article in Additional Concerns
      1

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

      He should have gotten millions. How much is your life worth?
    2. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      @cristiana, I react the same way. Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies. This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies. We have opioid receptors throughout our...
    3. knitty kitty
      0

      About Celiac Remission

    4. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated. So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. I came off dairy completely next and it worked like a charm...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748
    Maggie1349
    Newest Member
    Maggie1349
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • 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.