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I Don't Understand How My Son Tested - Three Times


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18 replies to this topic

#1 megsybeth

 
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Posted 09 October 2012 - 12:37 PM

My son has been tested three times since he was one and a half, blood tests only, because of short stature, failure to thrive. I have to admit I was very cynical and didn't really pay attention to the first two rounds of testing, just heard he was negative. But now he's textbook celiac, gi problems in addition to growth issues. And I got myself tested and my numbers seem to be off the charts positive.

I was set to have him get an endoscopy on Thursday but canceled because I want to have the best GI possible do it. Current GI told me, "I've never seen a child with negative blood work test positive for celiac on the biopsy but apparently it does happen". I have heard it happens too but how common is it?

Is it really possible he could have celiac and benefit from the gluten-free diet even if he has no extra antibodies? I will put him on gluten-free diet no matter what and stay if it helps, but I don't want to miss something else.
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#2 ravenwoodglass

 
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Posted 09 October 2012 - 02:07 PM

Yes it is possible to have celiac and have tests come back negative, even with adults but it is even more common with children. Since you are celiac it is even more likely he is also since celiac is strongly genetic. Your plan to have him go gluten free no matter what the tests results are is a good plan. Even if the tests are negative the doctor may give him a diagnosis based on the resolution of his symptoms once he is gluten free for a while.
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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 Roda

 
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Posted 09 October 2012 - 03:45 PM

Sounds like my oldest son. He has been blood tested annually since my diagnosis 4 years ago. Every time blood work VERY negative. It wasn't until 6 months after my youngest son tested positive for celiac that I began rethinking the whole thing with my oldest. Last year I did take him to a GI and she did a scope/biopsy. It was completely normal also. The GI knew regardless of the results, that I was at least going to trial him gluten free for 3 months to see if he had any improvements in his symptoms. All I have to say was it made a world of difference. I did let him eat gluten after three months to "test" it out and after a reaction, he decided he felt better gluten free. He has been gluten free for a year now.

He is not diagnosed with celiac, but is non celiac gluten intolerant. He goes for his one year check up(a little late LOL) next month.
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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.


#4 megsybeth

 
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Posted 09 October 2012 - 04:12 PM

Thanks! I have to say I'm actually happy to get the diagnosis if it will help my son. In addition to GI issues recently, very slow growth, he also has terrible attention problems, gets so fatigued, has a lot of motor issues. I know not to expect the world from going gluten-free but if there is something that will help him get the nutrition he needs to be his best and be as happy as he can be, I'm so happy if we've found it. And at least the gluten-free stuff can be written off on taxes for my diagnosis and insurance should cover a nutritionist for me, who can help with my boys.

It's all so new, just found out today. Taking it all in still.
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#5 GFinDC

 
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Posted 09 October 2012 - 05:32 PM

The usual recommendation is to have a person eat gluten for 6 weeks to 3 months before the endoscopy. Antibodies may or may not build up in the blood stream before the damage is visible in the gut. Most of the antibodies are in the gut, not floating around the blood stream aimlessly. They go where the problem is and that is the gut. Some people never test positive on blood tests, but have damaged guts from celiac.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 ravenwoodglass

 
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Posted 10 October 2012 - 04:10 AM

And at least the gluten-free stuff can be written off on taxes


Do talk to your tax professional about this. The process is very complicated and requires you to note the cost difference between your gluten free items and the same item with gluten as you can only deduct the difference. It is also a medical expense so you can only take advantage of it if your medical expenses are over a certain percentage of your income. It may also flag you for a audit.
Do go with as much naturally gluten free food as you can at least at first to help speed healing.
I hope you are all feeling better soon.
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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)

#7 Darn210

 
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Posted 10 October 2012 - 04:40 AM

Just wanted to say that my son tested negative also but the GI was so concerned with his small stature that we did a 6 month gluten free trial (daughter is Celiac and had already been gluten free for 6 months at that point so it was not a big deal for me to take another kid gluten free). If my son had started growing, I know that this particular GI would have given him a Celiac diagnosis. However, there was no growth spurt and he went back to gluten.

Just sayin' . . . sometimes, especially in kids, you just have to try the diet. You do want to push for an official diagnosis, though, as you may need it for accommodations in school. When you talk to the GI, tell him you plan on a trial diet after the testing/endoscopy. My son's GI was monitoring weight and height during his trial and your GI may want to do that as well . . . all evidence to go towards an official diagnosis.
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Janet

Experience is what you get when you didn't get what you wanted.


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#8 Cara in Boston

 
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Posted 11 October 2012 - 07:21 AM

Do you know which blood tests were done? My son tested negative on most of the tests, and positive on only the IgG tests. His first doctor said he couldn't have it because the most common test (TTG IgA) was negative and he had no "classic" symptoms. By this time, I had tested positive too, so I knew to keep looking. We found a celiac specialist who did an endoscopy and found extensive damage. Weird thing, my endoscopy was negative. Regardless of our results, we both went gluten free and are feeling much, much better.

Cara
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#9 megsybeth

 
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Posted 12 October 2012 - 06:26 AM

Hi Cara,

I had her fax me the results this time. I was a little confused because she only told me two results on the phone but I thought the panel was four tests. I'll write it down here. She said when she was ordering blood work that she was doing a "full panel" because the prior one was not complete.

Transglutaminase lgG Autoantibodies <3.0
Transglutaminase lgA Autoantibodies <3
Endomysial lgG Autoantibodies <1:2.5
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#10 frieze

 
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Posted 13 October 2012 - 10:00 AM

Hi Cara,

I had her fax me the results this time. I was a little confused because she only told me two results on the phone but I thought the panel was four tests. I'll write it down here. She said when she was ordering blood work that she was doing a "full panel" because the prior one was not complete.

Transglutaminase lgG Autoantibodies <3.0
Transglutaminase lgA Autoantibodies <3
Endomysial lgG Autoantibodies <1:2.5

Where is the total IgA? without it, the IgA results are meaningless.
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#11 mushroom

 
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Posted 13 October 2012 - 10:03 AM

Hi Cara,

I had her fax me the results this time. I was a little confused because she only told me two results on the phone but I thought the panel was four tests. I'll write it down here. She said when she was ordering blood work that she was doing a "full panel" because the prior one was not complete.

Transglutaminase lgG Autoantibodies <3.0
Transglutaminase lgA Autoantibodies <3
Endomysial lgG Autoantibodies <1:2.5


And she didn't do the DGP either, IgA or IGG :unsure:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
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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#12 Cara in Boston

 
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Posted 13 October 2012 - 01:00 PM

Yeah, looks like he didn't get the full panel or the most current tests. Even if he had, and they were still negative, I would ask for an endoscopy. Another "test" of course, is the gluten free diet. If you go that route, be sure your doctor is open to giving him a diagnosis based on a positive response to the diet - not all will. I felt much better after getting the "official" diagnosis since we will need it in order to make sure schools, camps, college dorms, etc. comply with our wishes and keep him safe.

Trust your instincts. Mom's just know.

Cara
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#13 megsybeth

 
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Posted 14 October 2012 - 04:07 AM

Thanks, Cara and Neroli. I do think that the best thing for my son is to have a good endoscopy done BUT I don't think it's feasible now. I was already annoyed with this GI for a number of things but then she called me back with the results of these tests. She wanted to go forward with a colonoscopy and endoscopy which I had pushed for but she said, "Apparently people test negative on the blood work and then get a positive biopsy but I've never seen this". I knew then I didn't want her doing the scope. I'd decided to take DS off gluten no matter what but to put him under only to have someone who's not really up on celiac do the biopsy seemed crazy to me. I mean if she can't even order the right number of tests do you think she knows where and how to look for damage to the villi?

So when I got my positive test the next day I called and canceled thinking I would take my son to a celiac specialist. I do have him scheduled for an initial appointment with someone but it's in a month. Then it would be another month probably to get an endoscopy, get through with more blood work. I just can't do it. I might be wrong from a scientific stand point. But if my son grows, feels better, can concentrate more, starts to actually eat food, stops with the diarrhea/constipation lottery, that's really all that matters. And I do think I can find someone who can diagnose him on that.
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#14 megsybeth

 
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Posted 31 October 2012 - 06:56 PM

Hi Everyone, My son's endoscopy is tomorrow. Also doing a colonoscopy so it's been a fun Halloween of liquid diet! I have an appointment with a celiac specialist at the end of November but decided to put my son back on gluten after a week off (he's been back on three weeks and suffering a lot) and have old GI do scope and I'll have all biopsy images, along with blood work sent to specialist.

I've read Peter Green's book and I have to say the tests still confuse me. I discovered there was a total LGA on his test, but it was above "celiac" section. It was 257 with normal range 40-350. But I guess it wasn't the same exact sample or lab, if that makes any difference. Because the celiac tests were send out and I think that one was in house. Also he had low ferratin (20, with normal range 22-322) which is a classic celiac deficiency I know. Also he had low glucose (not sure if that has to do with time of day or what he's eaten, but I'm always sure to have him drink and eat well before blood is drawn), low MCV, high platelets, low neutrophils, high eosinophils, low creatinine and a high BUN/Creatinine ratio.

I believe my son has celiac but if not, he does not seem like a healthy boy. I of course googled all the labs and the main theme seems to be these are levels you see when someone is dealing with infection, malnutrition or inflammation. GI doesn't seem concerned.

Wish us luck!
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#15 GottaSki

 
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Posted 31 October 2012 - 07:28 PM

Hang in there Mom!

Good LUCK :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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