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"borderline" Celiac


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#1 ctenny

 
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Posted 09 February 2012 - 01:08 PM

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.
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#2 ravenwoodglass

 
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Posted 09 February 2012 - 01:14 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 ctenny

 
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Posted 09 February 2012 - 01:20 PM

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".
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#4 ravenwoodglass

 
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Posted 09 February 2012 - 02:23 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 mushroom

 
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Posted 09 February 2012 - 03:03 PM

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:
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Neroli


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Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#6 Roda

 
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Posted 09 February 2012 - 06:11 PM

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!!
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#7 Skylark

 
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Posted 09 February 2012 - 06:26 PM

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.
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#8 ctenny

 
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Posted 09 February 2012 - 06:55 PM

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.
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#9 chi1968

 
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Posted 10 February 2012 - 08:55 PM

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!!!!
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Blood test 12/14/11; tTG IGA weak positive at 24.03; DGP IgA positive at 29.9

Confirmed diagnosis via endoscopy on 1/16/12; gluten-free since 1/16/12

#10 researchmomma

 
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Posted 14 February 2012 - 08:43 AM

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!
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#11 Takala

 
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Posted 14 February 2012 - 08:55 AM

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

 
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Posted 14 February 2012 - 07:35 PM

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....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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#13 ctenny

 
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Posted 15 February 2012 - 10:08 AM

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....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!
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#14 maramelia

 
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Posted 22 February 2012 - 01:00 PM

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: īt is NOT CELIAC DISEASE!!!")

and... after 2,5 months on gluten free diet >>>

1 - his growth is this: 1cm in the first month (to compare, at his age, the normal velocity is 4-6/year >>> it is the double); 0,5cm in the second month. LAST YEAR, BEFORE THIS DIET, HE GAINED JUST 4CM IN THE WHOLE YEAR...

2 - no gastro symptoms at all (no urgent evacuations, no abdominal pain, the "malnutritional belly"had gone...), now he asks for food (he says: im hungry, and he naver said such a thing!!!)...

-----

so, what should i do? treat the exams or the patient (my son)?!!!

our gastropediatrician is prescribing the gluten free diet to see what comes in the future...
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36yo husband with probable celiac disease
== EMA and TTG: negative / no biopsy
== good response since GFD (nov/18/11)
6yo boy with probable celiac disease - since nov/18/11 on GFD
== negative EMA / positive TTG / positive Marsh I biopsy and negative HLA DQ2 and DQ8
my younger son = no symptoms at all
Myself = no symptoms at all

#15 anna34

 
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Posted 22 February 2012 - 03:44 PM

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.
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blood test "borderline" (February 2011)
no further testing
gluten-free (March 2011)
positive response




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