"borderline" Celiac

[ctenny]

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.

[ravenwoodglass]

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.

[ctenny]

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".

[ravenwoodglass]

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.

[mushroom]

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' My 'borderline' hubs subsequently broke out in dermatitis herpetiformis.

[Roda]

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' My 'borderline' hubs subsequently broke out in dermatitis herpetiformis.

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!!

[Skylark]

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' My 'borderline' hubs subsequently broke out in dermatitis herpetiformis.

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.

[ctenny]

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.

[chi1968]

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!!!!

[researchmomma]

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!

[Takala]

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

[cyberprof]

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 Open Original Shared Link)

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.

[ctenny]

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 Open Original Shared Link)

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!

[maramelia]

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:

[anna34]

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.

[ctenny]

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.