Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

"borderline" Celiac
0

16 posts in this topic

I was finally diagnosed with Celiac on Monday after having several tests come back "borderline" positive. My symptoms haven't really been digestive (though somewhat they have been), for the most part my symptoms were neurological (twitches, numbness, ect).

My endoscopy results were fuzzy, with an unusual concentration of lymphocytes but barely any blunting of the villi.

My tTG antibody test was a 10, whereas the cutoff is 8. (In other words, it's barely positive)

The DNA Test came back heterozygous for DQ2 (if I remember correctly... I don't have the sheet in front of me, but the doctor said it have me a moderate risk of Celiac (1:35))

With all 3 of those tests coming back "borderline" positive, he went ahead and told me I was most likely positive for Celiac.

What do you guys think of the results? Is the doctor right? I personally believe he is right, but the tests are so... fuzzy. I've been on the gluten-free diet only since Monday now, so I can't tell a difference yet. Hopefully in the next few weeks or months I'll know for sure if gluten was the culprit behind my annoying neurological symptoms.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the board. IMHO the doctor was right and hopefully you will be feeling much better very soon. Do read as much as you can here and ask any questions you need to.

1

Share this post


Link to post
Share on other sites

Welcome to the board. IMHO the doctor was right and hopefully you will be feeling much better very soon. Do read as much as you can here and ask any questions you need to.

Thanks for the fast response ravenwoodglass!

I think the doctor is right as well. Hopefully the gluten-free diet will do the trick. And, hopefully I can follow it closely enough so as not to let any gluten sneak through... that's the hard part, making sure that everything I digest is free of gluten. I've never had to read the nutritional facts and ingredient list before now. It's quite a challenge, but "you gotta do what you gotta do".

0

Share this post


Link to post
Share on other sites

Go with as much whole unprocessed food as you can as that will speed healing. If you live near a Wegmans they mark all their gluten-free stuff with a circle G if not Unilever and Kraft are two mainstream companies that will clearly label gluten and there are others. Do be sure to get a new toaster for just gluten free bread, a new strainer for gluten-free pastas, new cutting boards and replace any scratched non-stick pans.

You may find some sublingual B12 to be helpful in speeding healing. Hope your feeling better soon but we do sometimes have ups and downs at first. Also since you have been diagnosed all first degree family members should also be tested, if they will.

0

Share this post


Link to post
Share on other sites

If you are just under the positive range the doctors have no problem in calling it negative. If you arejust over the positive mark they call you 'borderline' :blink: My 'borderline' hubs subsequently broke out in dermatitis herpetiformis. :rolleyes:

0

Share this post


Link to post
Share on other sites




If you are just under the positive range the doctors have no problem in calling it negative. If you arejust over the positive mark they call you 'borderline' :blink: My 'borderline' hubs subsequently broke out in dermatitis herpetiformis. :rolleyes:

This is so true. I see this all the time at work. They are fine calling something negative, but very hesitant to call it positive. Ranges are guidlines, but not everyone is going to fall exactly in those ranges. How can a test tell you for sure what is "normal" for you? Like I said it is good to have guidelines, but it is important to recognize that there is a lot of varriation between people.

Good for your doctor in being proactive. I do believe he he correct in your diagnosis. My youngest son was negative on all the celiac tests except his IgA tTG. Cut off for normal was 15 and he was 16. His allergist said that it's positive and it doesn't matter "how" positive. He was diagnosed with celiac based on his symptoms, his positive blood test, recovery on the gluten free diet and return of symptoms when exposed to gluten and my diagnosis.

Welcome to the forum!!

0

Share this post


Link to post
Share on other sites

If you are just under the positive range the doctors have no problem in calling it negative. If you arejust over the positive mark they call you 'borderline' :blink: My 'borderline' hubs subsequently broke out in dermatitis herpetiformis. :rolleyes:

Oh my gosh yes! Isn't it ridiculous?

I bet you feel much better off gluten ctenny. Give it a few months, as healing your nervous system takes time.

0

Share this post


Link to post
Share on other sites

Thanks everybody! I appreciate the feedback, and y'all are right... no two Celiac's are the same. I mean honestly, the initial symptoms that sent me to the doctor weren't GI related. Though I've seen studies that say Celiac has a larger body of symptoms found outside of the GI field than previously thought.

0

Share this post


Link to post
Share on other sites

Thanks everybody! I appreciate the feedback, and y'all are right... no two Celiac's are the same. I mean honestly, the initial symptoms that sent me to the doctor weren't GI related. Though I've seen studies that say Celiac has a larger body of symptoms found outside of the GI field than previously thought.

My tests came back as a low positive. I had ordered the tests through my allergy DR after I found out that one of my sons had Celiac. Then, we were all tested and me and one other son had it! The allergy doc said I could see a GI or just try going gluten free, but I wanted to know for sure so I saw the GI.

What kills me is that when we were going through the whole diagnosis process for myself and one other son is that both me and my husband both had people who told us that they had a kid who "did have celiac but now the doctor says they have outgrown it."

I wish I knew what planet these doctors are from. My kids' pediatric GI doctor and everything I read says that you cannot outgrow this thing. And, even if you are "low" positive, reading about all of the things that you could get, from stomach cancer to lymphoma to liver disease, isn't it worth being proactive and protecting your health by going gluten free, even if there's just a chance? We had dinner with another doctor the other night, and he was asking about if we've planned our cheat days. I was like "what?" I wanted to "tear" into him, but he was a client of my husband's, so I couldn't really go off. Gee, what are they teaching these days?

Good luck!!!!

1

Share this post


Link to post
Share on other sites

I am glad that your doctor didn't wait for a "high positive" which means extensive damage is going on. That would have been silly and it happens all too much as seen on this forum. Welcome to the Boards and to a healthier you!

0

Share this post


Link to post
Share on other sites

Better to catch this now than to go for decades thinking you might have or be developing MS because the doctors screwed up. <_<

0

Share this post


Link to post
Share on other sites

My endoscopy results were fuzzy, with an unusual concentration of lymphocytes but barely any blunting of the villi.

My tTG antibody test was a 10, whereas the cutoff is 8. (In other words, it's barely positive)

The DNA Test came back heterozygous for DQ2 (if I remember correctly... I don't have the sheet in front of me, but the doctor said it have me a moderate risk of Celiac (1:35))

I had similar biopsy results...it's Marsh 1 on the Marsh scale, with the four Marsh stages as follows:

Marsh stage 0- normal mucosa

Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes

Marsh stage 2: proliferation of the crypts of Lieberkuhn

Marsh stage 3: partial or complete villous atrophy

Marsh stage 4: hypoplasia of the small bowel architecture (from Wikipedia http://en.wikipedia.org/wiki/Coeliac_disease)

If someone is Marsh 1, why wait until they are Stage 3 or Stage 4 and it takes 4-5 years to recover? Perhaps medical science will come up with another explanation in the future, but I got a celiac diagnosis with Marsh 1, negative blood work and tremendous response to the diet (plus positive genes). With the health problmes I had at Marsh 1 (resolved now) I would have hated to wait to get to stage 3 or 4. However, my son's GI says that some GI's don't consider Marsh 1 to be celiac. Boo Hiss.

Ctenny, I'm glad that you accept that you are celiac and I wish you good health.

1

Share this post


Link to post
Share on other sites

I had similar biopsy results...it's Marsh 1 on the Marsh scale, with the four Marsh stages as follows:

Marsh stage 0- normal mucosa

Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes

Marsh stage 2: proliferation of the crypts of Lieberkuhn

Marsh stage 3: partial or complete villous atrophy

Marsh stage 4: hypoplasia of the small bowel architecture (from Wikipedia http://en.wikipedia.org/wiki/Coeliac_disease)

If someone is Marsh 1, why wait until they are Stage 3 or Stage 4 and it takes 4-5 years to recover? Perhaps medical science will come up with another explanation in the future, but I got a celiac diagnosis with Marsh 1, negative blood work and tremendous response to the diet (plus positive genes). With the health problmes I had at Marsh 1 (resolved now) I would have hated to wait to get to stage 3 or 4. However, my son's GI says that some GI's don't consider Marsh 1 to be celiac. Boo Hiss.

Ctenny, I'm glad that you accept that you are celiac and I wish you good health.

Thanks, for the response. I remember reading somewhere about the Marsh levels. Thanks to everyone who's posted so far. It's been great hearing your advice. My roommate made pizza last night... boy, that was tempting. But I didn't touch it!

0

Share this post


Link to post
Share on other sites

Thanks, for the response. I remember reading somewhere about the Marsh levels. Thanks to everyone who's posted so far. It's been great hearing your advice. My roommate made pizza last night... boy, that was tempting. But I didn't touch it!

ctenny,

the case of my boy, 6yo, is "better"than yours:

6yo - so young

short stature

few gastrointestinal symptoms

almost no diarrhea

anemia

hypothiroidism (no congenital, appeared last year, concomitant with short stature)

decreased growth velocity - dropped in growth chart percentiles

just TG antibody slithly positive

no antiendomisio / no antigliadin / NO DQ2 - DQ8 GENES!!!!! (WITH this LAST BLOOD TEST - every doctor says:

0

Share this post


Link to post
Share on other sites

Welcome to the board!

One year ago my results came back "borderline" and I was told to "try the diet if you want to". My symptoms were more neurological like yours. Well, I gave the diet a try and started feeling better within days. It has been quite remarkable. Everybody's recovery time is different. Stick with it though; the rewards will surprise you.

0

Share this post


Link to post
Share on other sites

Maramelia,

I'm sorry your young son has Celiac. I'm 20 and was just diagnosed (does that mean I have just developed the disease or have I been gluten intolerant all my life and had no clue?). I hope he's doing well with the diet. And awesome! I'm 6ft and my mom, after learning that I had Celiac, and reflecting upon the great height of my great grandfather, said that maybe if I hadn't eaten gluten all along I could be ~7ft. Who knows... the sky is the limit - literally. It seems the gluten-free diet is working great for your son and that's the point. Thank God this disease is very manageable - it can be difficult but at least there's not amandatory medication. I'm in the same boat too... I really never noticed my GI symptoms. I never really considered them until I saw the list of Celiac symptoms. For me it was neurological so I was scared of having something worse (my genepool is littered with autoimmune diseases).

anna34,

I definitely plan on sticking with it. I miss certain foods, but that's life. It's not the end of the world that I can no longer eat x. The doctor says I have it and I trust his judgment. Hopefully, come this summer, after several months have passed, I will have noticed a considerable difference. The differences right now are so blurry that it's hard to acknowledge any change.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,608
    • Total Posts
      918,336
  • Topics

  • Posts

    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined