7 replies to this topic

[carecare]

I found out already today that his celiac blood test was positive. Well, the nurse called and said "weak positive". I'm going to pick up a copy of the results tomorrow and see what you guys think. His ped wants to refer us to a ped. GI doctor. Since a positive is a positive...I shouldn't have to think it's not right? Also, I know the next step would be a biopsy...but why do they biopsy if you actually get a positive blood test. Really, why wouldn't they just say you are celiac with just the a positive blood test??

Before we got the results my son said to me today "mom, I guess I'm kind of glad that I got the blood test done because if it is positive then I'll be able to make changes and I'll be able to feel good again." So, why should I wait and make him suffer any longer....because who knows when I'd get in to see a GI doctor and then to schedule a biopsy....the whole while making my son eat something that's making him feel bad.

[come dance with me]

I chose not to have the biopsy for my LO who was 7 at the time. A positive is a positive. After 6 months off it the reaction to cross contamination affect on her was unbelieveable! I'm happy with my choice but it's up to you really.

[Roda]

My now 6 1/2 year old had a weak positive on his ttg last November. I opted out of doing the biopsy on him at that time. My husband regretted that decision but I wasn't willing to put him back on it for three months to "maybe" get a positive biopsy. He was gluten free for 4 1/2 months when we decided to do a gluten challenge. Lets just say that it didn't go well and my husband is now 100% convinced that the blood test was accurate, that gluten is a problem for him and he has celiac.

My 10 1/2 year old son is a different story. He has repeated blood tests that are negative. I have struggled with trialing him gluten free for about a year now. We changed allergists last July and after him and younger brother was retested for celiac (when his brother showed positive), he is pretty certain that the oldest son is either a sero negative celiac or has non celiac gluten intolerence. He wants him gluten free because of some of his history, his brother being positive on blood work and me being diagnosed via blood and biopsy. After some soul searching and talking with my husband we decided to consult with a pediatric GI. We went last month and discussed his medical history, current symptoms, brother and mine diagnosis and his allergist's recommendation. He goes August 17th for a scope and biopsy. His daddy wanted to exhaust all testing before I put him gluten free. I'm not waiting on the results to put him gluten free. He will at a minimum do a three month trial or if positive results be gluten free for good.

Even though I made different choices with both my boys, I feel for each of them the decision was the right one.

[come dance with me]

I was told it's like a pregnancy test in that if you test positive it's extremely unlikely that it's a false positive but if you test negative you can still be positive so further testing may be required.

[pain*in*my*gut]

From what I understand (I am new to this, so it's not much ) if you are "just" gluten intolerant vs. full blown Celiac disease, you don't have an increased risk of developing cancers and all of the serious intestinal damage that comes with Celiac disease. So, for me, having the DX of either gluten-intolerant with or without Celiac is important info to have. In other words, I need to know if it's true Celiac disease so that I can be monitored for things that Celiacs are more prone to get like cancers and diabetes. Also, if I can tell my family "I have been tested by a doctor and without a doubt I have Celiac disease, you might have it too", they will be more likely to get tested and get treated.

Regardless of my biopsy results next month, I am still going gluten free for the rest of my life because of my positive blood tests. I am tired of feeling like crap!! I will have my 6 year old tested (blood work, including genetics), and cross the "to biopsy or not" bridge if we get to it. It's a hard choice to make when you are talking about little ones!

[carecare]

But being gluten intolerant wouldn't give you a positive blood test...only Celiac would. If that deamidated gliadin test is 98% specific...which I gather means 98% of individuals testing positive on that test are celiac. That plus having symptoms that go away when implementing a gluten free diet is enough for me to believe and actually feel confident telling people he has celiac disease. Also, with the possibility of false negatives on the biopsy end...I'm just content with just the blood test at this point. It's day 3 of gluten free and the sores in his mouth are almost completely gone and don't hurt. I'm hoping the muscles pain will be next! I can't see waiting 2 months for a biopsy and continue to put him through pain and being uncomfortable for the next couple months....when the cure is so easy and can start today.

Good luck with your testing!

[sue1234]

Pain in gut, I am also positive on my deaminated anti-gliadin at 45(0-10). My last biopsy two years ago was negative, so was told I'm not celiac. I am having a repeat biopsy soon with another doctor, and then am going gluten-free. May I ask what your level was on your test? Have you had symptoms your whole life? I am 50, but my stomach symptoms of horrendous bloating began 11 years ago.

[pain*in*my*gut]

Pain in gut, I am also positive on my deaminated anti-gliadin at 45(0-10). My last biopsy two years ago was negative, so was told I'm not celiac. I am having a repeat biopsy soon with another doctor, and then am going gluten-free. May I ask what your level was on your test? Have you had symptoms your whole life? I am 50, but my stomach symptoms of horrendous bloating began 11 years ago.

My DGP was 59 (0-10) . Yes I have had symptoms for the last 4 years, which began with a bowel resection for endometriosis (I think this was the trigger for me). I recently put together a timeline of events (I am geek like that) for my GI doc. Here is how it all began for me:

2007
•Bowel resection 4/2007 (endometrial mass on rectosigmoid colon)
•Bowel stricture (scar tissue causing 4mm bowel obstruction) repair 7/2007
•Developed GI yeast infection subsequent to stricture repair treated with 3 weeks anti-fungal meds
•Severe pain/inflammation @ anastamosis site (sigmoidoscopy 8/2007 revealed inflamation)
•Treated with rectal lidocane/hydrocortisone
•Celiac panel was negative at this time (high end of normal)

2008
•Developed 2nd stricture @ anastamosis site w/ repair 1/1008
•Sricture issues calmed down, but fatigue, brain fog, joint pain, back pain increased for the remainder of 2008

2009
•2/2009 dx with Fibromyalgia by rheumy, all autoimmune tests neg EXCEPT ASCA (marker for Crohns disease)
•GI issues at this time were constipation, bloating, gas attributed to pain meds
•DX with low vit D, TSH high normal range

2010
•Fibromyalgia struggle continues (multiple flares a month)
•Miscarriage Jan
•Miscarriage April
•Experienced several months of severe bloating and loose stools, alternating with constipation
•Increased pelvic pain/adhesions, surgery 9/2010
•Ovarian Failure 12/2010
•Vit. D still low

2011
•Hospitalized for 2 days in 3/2011 for severe back pain and constipation (with rectal pain @ anastamosis site)
•Begain having bouts of ULQ pain, severe bloating after certain meals
•6/2011 severe attack of ULQ pain, given Bentyl (no relief)
•7/2011 ULQ attacks continue, + Celiac ABS, elevated CRP

Sorry this is so long, but that is how I got here. I am actually relieved to have a dx that I can fix!