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Positive Bloodwork But Negative Biopsy In My 7Yo Need Advice!


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10 replies to this topic

#1 M817

 
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Posted 25 September 2012 - 11:47 AM

Hi everyone! I have a 7 yr old daughter who tested positive with the blood works for celiac but after having the upper endoscopy done the doctor said there are no signs of celiac nor any allergies ( they took samples from small intestine, stomach and the esophagus) The only symptoms she has are that she has always had very foul odored bowel movements sort of on the looser side, and she dropped on the growth chart drastically!! In 3 yrs she went from 50th percentile in height to only 7th percentile. Other than that she seems healthy, she is active. Oh and also recently when I took her to her physical her eye sight had gotten really weak, I mean she is close to a negative 4!!!( I don't know if that can considered one of the symptoms of celiac)! When going under biopsy the GI said she notices that her stomach lining was bruised, and she asked me if my daughter had been taking medications like Tylenol or Advil (because apparently those meds can bruise the stomach) which my daughter hadn't . So after reading many different posts on this site I decided to register and see if anyone had any suggestions to me. I have started her on gluten-free for 5 days now, and because she has never really had immediate "symptoms" I don't even know if I will notice any difference by following gluten-free diet. I am so confused, if anyone else has ever experienced anything similar please advise me on what to do next.
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#2 GottaSki

 
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Posted 25 September 2012 - 01:43 PM

You are doing the best next thing. Remove ALL gluten and wait for improvement. Although she does not have obvious reactions to gluten this may change in the coming months - this is very common. Given time she will likely grow, have improved bowel movements and other improvements to minor symptoms that you may not have noticed until gluten is removed.

Have her blood re-tested at either 3 or 6 months gluten-free to compare results.

If you don't have written or electronic copies of her blood tests or endoscopic report - ask for them. It is important to know which blood tests were done, which were positive and having the language used in the endoscopic report can often help understand what the doctor saw and exactly where the biopsies were obtained.

Celiac Disease is genetic - you, your husband along with any other children in the family should have full celiac blood panels run as well.

Welcome - keep asking questions - it helps speed the transition to gluten-free living.
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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 :)


#3 nvsmom

 
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Posted 25 September 2012 - 05:48 PM

I am so glad you've started her on a gluten-free diet. A positive blood test means she is celiac, so many doctors seem to forget that!

I don.t have advice on a bruised looking stomach except to guess that is how it is presenting in her. I really don't know. Hopefully it will disappear over time with th gluten-free diet.

You might want to recheck her blood tests in 6 months or so to ensure she has been gluten-free. By then her numbers should at, or close to, normal.

Best wishes to you and your daughter.
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#4 Roda

 
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Posted 25 September 2012 - 10:55 PM

My now 7 yr old had positive blood work at age 5. Since I was diagnosed celiac and with his positive test I put him gluten free. I feared he would get a "negative" biopsy and told he didn't have celiac. Several months later we regretted not doing it and after 4.5 months of being gluten free we decided to do a gluten challange. It didn't go well and we had to stop the challenge three days later.

So even though I regretted not getting it done in the first place, if he would have had it done and it came back negative, the result would have been the same..putting him on a gluten free diet. He clearly has a gluten issue and given the family history and his positive blood work, I have no doubt he has celiac.

My oldest son is 11 and has been negative on his blood work every year for the past 4 years. He was having issues and has had issues since he was little so last year we decided to see a GI. He did have and endoscopy/biopsy and it was negative also. We decided anyway to trial him gluten free to see if we noticed any improvements. He gained 6 pounds in 1.5 months, his color improved, his bowel movements became regular(battled constipation since birth), no more nausea/gas/abdominal bloating/stomach aches and has slowly started growing. If he gets glutened he is miserable.

So I think the best thing you could do is put your daughter gluten free since you have done the blood testing and the scope.
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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.


#5 Mom-of-Two

 
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Posted 01 October 2012 - 05:55 AM

My 8 year old also had positive labs (including endomysial antibody), and I myself have celiac- she was only tested because of my own diagnosis. Her biopsy was normal, they took plenty of samples and her cell counts and everything were normal, first GI told me no celiac, no damage, keep her on regular diet and retest in 6 months. I was stunned by this advice since she had positive labs AND family history- in regard to symptoms, she had complained of random joint pain off and on for at least a year prior but her pediatrician stated it was just part of being active. But she would crack her ankles and wrists/knuckles all the time (she was tested for JRA and normal there). Otherwise, no GI symptoms. I felt strongly that her growth slowed down, all I can say is she always had a gymnast body type, muscular strong legs, but smack at 50% on growth curve, basically since birth. At her 7 year visit, she had only gained one pound and one inch in length- her pediatrician assured me this is normal at her age........

Went to another GI who specializes in celiac in kids, for another opinion. Said the same darn thing. BUT, he did a few things- he ran another panel that included EMA (first screening was tTG test only), he ran iron, vitamin D and CBC. She was deficient in vitamin D despite vitamins and a D supplement that we all take in cold/flu season, she also gets plenty of sun daily. She tested pos on the endomysial antibody and even WITH that, the GI could not formerly diagnose her. He was very understanding however and believed himself that she likely does have active celiac, just not developed significant damage, OR it was patchy on biopsy which IS common in children. He left it up to us, keep gluten free and retest or stay on regular diet and retest.

We already had a gluten free household so we just made the switch pretty easily. It has been 2 months and she has gained THREE pounds, not had a single complaint of joint pain, and also stopped having random issues of "spicy" in her throat which we assumed was just indigestion. Nothing since. She is looking healthier and very active.

You have your answer. It took me time to accept that myself, I was searching for a definitive YES with my own child but realize all the info was there, I just didn't want it to be true! I think having celiac ourselves, we just want to believe our children won't have to adjust to such a thing. However, my kiddo has done amazing and it has been a non issue! :)

Staying gluten free and seeing if her numbers normalize will give you a clear answer. Children heal quickly. I had my 6 month labs myself, and was normal- and I had very high numbers.

Good luck to you!
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#6 Cara in Boston

 
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Posted 02 October 2012 - 05:07 AM

After my son had a positive biopsy, I got tested too. My blood test was positive and my biopsy negative. The doctor couldn't "officially" diagnose me with celiac disease since the biopsy was negative but diagnosed me with "gluten intolerance" instead. Whatever. I most certainly have celiac disease. All my classic symptoms went away when I started eating gluten free.

My son's doctor thinks it is all very silly - why wait for damage to be found when it is clear you should not be eating gluten. There are LOTS of reasons why a biopsy might be negative, but not so many of why a blood test would be positive.

Your doctor is basically telling you to continue giving your daughter "poison", until it damages her system enough that he can find it and measure it. Why would anyone do that? That is like telling someone who is pre-diabetic to just continue what they are doing until they get really, really sick and need significant medical intervention.

Your instinct is correct - try the diet for several months and see if you don't see lots of positive changes.

My son grew 3 inches within months of starting the diet.
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#7 shadowicewolf

 
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Posted 02 October 2012 - 09:55 AM

^ same, positve blood, negative bio (4 weeks after gluten free). Positive reaction to diet. Positive genetic test. Was labled intolerent.

Talked to two other doctors, they agreed it was celiac based off of my blood and genetic tests. Thats all i needed.
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#8 AGH2010

 
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Posted 02 October 2012 - 03:14 PM

Wanted to share what we learned from our 2nd opinion with a pediatric celiac expert. My 2.5 yo tested positive on EMA and ttg igg but biopsy was negative. Our original dr thought it meant no celiac and celebrated. The celiac expert said the official term for her was "potential celiac". Gave me a few studies that show that 1/3 of potential celiacs will go on to develop celiac if kept on gluten. The studies also show however that not all potential celiacs will develop but there's still no way of knowing who can tolerate having the antibodies without ever developing the intestinal damage. Our dr said that in kids the number of antibodies can actually go up and down on its own, even while on a gluten containing diet.

Nonetheless her recommendation was that we go gluten-free and we whole-heartedly agreed. Have been gluten-free for 2 mos. Her only symptom was constipation and she's been taking Milk of Magnesia since May so it's hard to tell a difference. The dr said constipation takes the longest to improve from her experience.

I feel better knowing that we're minimizing her chances of developing all the other issues that go with celiac by eliminating gluten, even though it's not an easy diet to keep outside the house.
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#9 icm

 
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Posted 02 October 2012 - 11:58 PM

Have you asked for the FULL and complete celiac panel? When I say FULL I mean this:

AGA (anti-gliadin antibodies)

TTG (anti-tissue transglutaminase antibodies)
EMA (anti-endomysial antibodies)
DGP (anti-deamidated gliadin peptide antibodies)

I would recommend you do all of these blood tests (especially the DGP which is highly specific and sensitive, even though most American labs don't screen for this) before committing your 7yo to a gluten free diet.
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#10 M817

 
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Posted 11 October 2012 - 12:48 PM

Have you asked for the FULL and complete celiac panel? When I say FULL I mean this:

AGA (anti-gliadin antibodies)

TTG (anti-tissue transglutaminase antibodies)
EMA (anti-endomysial antibodies)
DGP (anti-deamidated gliadin peptide antibodies)

I would recommend you do all of these blood tests (especially the DGP which is highly specific and sensitive, even though most American labs don't screen for this) before committing your 7yo to a gluten free diet.


Thank you all for all your responses, im new to this forum/site, so I hope by replyig to this post, you will all be able to see it.
Well the Ped GI said, my 7 year old was indeed tested for the full panel celiac. According to the results everything was normal with the exception of DGP (Deamidated one) which was at 41, I guess normal would be somewhere around low 20s. Other than that she said everything else was normal. I had them check her blood zinc level, vitamin D, calcium, as well as allergy to wheat. So the second blood work showed "slight" allergy to wheat. I am trying my best to follow a gluten free diet for her, but no one else in the family is celiac (at least we dont think anybody else is)so it has been quite a challenge. I have been buying all gluten free products, snacks for school, and frozen foods for quick meals. Even though I am being very cautious I still feel paranoid. I forget to check juice lables, or pasta sauce lables, I gave her shredded mozzerella cheese from Costco, until I realised it could contain gluten in order to keep the cheese from sticking to one another, so it really has been a challenge, but I am hoping as time goes on I will become more comfortable and hopefully I will see visible results in her growth to keep me motivated.
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#11 frieze

 
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Posted 12 October 2012 - 02:26 AM

Thank you all for all your responses, im new to this forum/site, so I hope by replyig to this post, you will all be able to see it.
Well the Ped GI said, my 7 year old was indeed tested for the full panel celiac. According to the results everything was normal with the exception of DGP (Deamidated one) which was at 41, I guess normal would be somewhere around low 20s. Other than that she said everything else was normal. I had them check her blood zinc level, vitamin D, calcium, as well as allergy to wheat. So the second blood work showed "slight" allergy to wheat. I am trying my best to follow a gluten free diet for her, but no one else in the family is celiac (at least we dont think anybody else is)so it has been quite a challenge. I have been buying all gluten free products, snacks for school, and frozen foods for quick meals. Even though I am being very cautious I still feel paranoid. I forget to check juice lables, or pasta sauce lables, I gave her shredded mozzerella cheese from Costco, until I realised it could contain gluten in order to keep the cheese from sticking to one another, so it really has been a challenge, but I am hoping as time goes on I will become more comfortable and hopefully I will see visible results in her growth to keep me motivated.

She is positive on the newest most specific test, and they won't diagnose? geesh. take care, anc good luck
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