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

"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
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined