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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.