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Really Torn About The Testing Process For Son - Please Weigh In!


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9 replies to this topic

#1 slee11211

 
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Posted 25 January 2013 - 05:27 PM

Hi all, I'm hoping some other parents who have dealt with this can shed some light for me. I was diagnosed at 46, but only through blood work (new doc, naturopath, he's celiac, he didn't feel I needed to go through another biopsy). Had a full work up 2 yrs prior (diff doc) because of crippling GERD and the blood work was negative, biopsies were negative, and they only found a small ulcer - no help at all. Since I've shown some of the more sideline issues since childhood (low immunity, sinus issues, heartburn, milk issues, depression/anxiety - none of the really obvious symptoms) and no doc has ever caught this, I'm just not feeling very confident in the process for testing my healthy child. I know the "gold standard" is the blood work and a biopsy, but I feel like I am constantly hearing about false negatives, and had that experience myself. (My biopsy and blood test came up negative 2 yrs prior to diagnosis, when I was had full on IBS for 9 straight months, was 105lbs and had GERD so bad it was like a heart attack! If they couldn't catch it then..).

Ok, so there's the set up - cut to 1.5 yrs later (doing much better, but finally went full on Paleo to get there) and both my Dr. and I felt like it was time to test my 7 yr old for Celiac. He's deathly afraid of needles and his ped practice is not so good at shots, so my doc said there was no incredible hurry if he's doing well. My son was showing signs of an allergy to milk, is super skinny (but that runs on both sides of fam), and eats a very gluten heavy diet (picky eater), occasional hives. All these things could be everything or nothing. So while my Dr told me he would test son for Celiac, the paperwork I received in mail was an allergy panel for the main 10 food allergies! While he showed a slight sensitivity to wheat and barley (not rye), there is nothing mentioning Celiac there. My doc tells me that he cannot "legally discuss the results" with me because my child is not technically his patient. This is all raising red flags for me, and now I'm at a loss for how to proceed.

So do I take this test to my child's pediatrician, who is famous (or infamous) for being very very "low intervention" (Dr. Cohen in NYC - has the book out that everyone had a few yrs back)? They already questioned my desire to test him after my diagnosis because he didn't "show any symptoms" (they clearly do not relate constipation/milk allergy/hives to Celiac or wheat sensitivity). Or do I go find a doc that specializes in Celiac, even though my child isn't showing any outward symptoms? It's a tough spot to be in: while I do not suspect that my child is a "raging" Celiac at this time, he could very easily have the gene and be starting up with a wheat sensitivity - and that would be horrible parenting to not rule it out. But to put him through a ton of tests with no "obvious" symptoms also seems strange to me, when there is such a seemingly high likelihood of a false negative (given my experiences, and he's related to me).

This is where some other parents might be able to help:

1. Is there any sense in just skipping to a genetic test (cheek swab test, I will just buy one myself) to see if the gene for Celiac is present? I feel like that test, combined with the allergy test showing wheat sensitivity would give me a clear path to take and we could avoid a potential false negative that blood test and biopsy might deliver. Or is this a false sense of security that the genetic test will be conclusive in determining that Celiac could be an issue down the line? If genetic test came back neg, I would probably do gluten free when able, but not be militant about it. And if genetic test was positive, I would do a full gluten free diet.

2. Since we are in NYC, should I just take him straight to one of the more well-known doctors who deal with Celiac? My fear is that they'll just skip right to blood test/biopsy...and given my experience with that, I'm not feeling confident it's necessary to take him there.

3. Or just stick with Tribeca Pediatrics (Dr Cohen) and hope that a well known Pediatrician will be able to track this and alert me at any critical point? They have referred me to an allergist...but again, as luck would have it, my personal experience with that was also horrible - I saw a well established NYC allergist about 9 months prior to diagnosis because I'd had chronic hives for 3 yrs running, and he sent me out of office saying that it was a "cat allergy" even though my test showed I was allergic to gluten and milk...oh, and I had non-existent levels of Vit D! At the time, that all meant nothing to me, but looking back, that seems almost like malpractice to mention all that as irrelevant to my health and simply curiosities.

So this is why I'm hazy on where to go from here...who to go to for help without going overboard for a kid that is happy and healthy. Do I put him through tests that might be unnecessary when there are genetic tests available and I have the funds to pursue that myself? Or am I placing a false sense of finality on a test like that? Where to start without feeling like I'm going overboard?

Anyone that would like to weigh in on this would be welcome...I know these are big questions. But I've been so focused on how to manage this for myself, I want to make sure I look at all angles for my son, regardless of my emotions surrounding the years of misdiagnosis I experienced.

Thank you all, hope to hear some interesting input....
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#2 GottaSki

 
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Posted 25 January 2013 - 07:41 PM

Welcome Slee!

IMO....get him tested. Now. Distract. Bribe. Do whatever necessary to get it done....blood tests are worth the effort.

Ok...a few other points -- I read through your post quickly.

1) Is he still eating gluten regularly? If not, the tests are not accurate.

2) Make sure you get EVERYTHING you need drawn at the same time:

Total Serum IgA
tTG - Both IgA and IgG
EMA
DGP - Both IgA and IgG

Nutrients:
All Bs, D, K, Iron, Ferritin, Copper, Zinc
CBC
CMP

Others may add a few.

It is worth the discomfort to gather the data -- again...my never to be humble opinion :)

PS...get the genetic test drawn at the same time!
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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 StephanieL

 
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Posted 25 January 2013 - 08:05 PM

Allergy testing like that (testing for a slew of things when there isn't any OBVIOUS allergy like immediate hives, breathing issues and that kind of thing) so I don't get why this famous Dr. would test like that which leads me to my conclusion of....

1) Find a new Dr. who WILL test. Any first degree relatives need to be tested every 3-5 years OR sooner if there are S&S.

Sorry they didn't d the testing you requested. I would be pretty upset about that too. I am not sure I would do the genetic testing (his got 1/2 yours so the likelihood of them being + are pretty good. Our GI Dr said not to bother testing my DS's sibs because of that line of thinking but who know).

Good luck. Hope you come to a conclusion you are happy with!
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#4 mamaupupup

 
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Posted 25 January 2013 - 08:55 PM

You are a great Mom!!! You are asking great, smart, thoughtful questions. I had to go around LOTS of doctors to get my kids tested and eventually got in to see Dr. Michelle Pietzak at Children's Hospital Los Angeles (a huge drive for us and so worth it). Ultimately, our twins were diagnosed with Celiac (as I had suspected) and Dr. Pietzak insisted my husband and I get tested (turns out I am a classic Celiac case--I had lost total sense of what was normal for me...).

My BIGGEST message: go immediately to the very best CELIAC specialist you can find. This is such a tricky disease and even the experts are very humble about what they know of the disease (in a very good, inquisitive way).

My next big message is this: part of our jobs as parents is to teach our children how to take care of themselves health-wise. We have to sometimes endure uncomfortable things (bloodwork) in order to make good, healthy decisions for our bodies. We have one daughter who was a screaming nightmare to draw blood from (it took me and four other adults to do her second blood draw a year ago). Now she just sits on my lap and is brave. I trust both of my six year old girls to make healthy decisions independently now, even when I'm not around--not that the last 12 months were easy by any stretch of the imagination.

A couple of points I echo:
- Make a thorough list of all bloodtests to be drawn and get it done at once
- Yes, do the blood genetic testing

A gigantic reason to intervene (test) is that if you catch Celiac when the kids are young, their likelihood of developing an additional auto-immune disease. This is from the Celiac Disease Foundation facebook post this week:

Early diagnosis is beneficial! "Children who are diagnosed
between the ages of 4 and 12 have a 17% risk [of developing an additional autoimmune disorder]; from 12-20 years of age the risk goes up to 27% and an individual diagnosed above the age of 20 has a 34% chance of developing another autoimmune disorder." - The University of Chicago Celiac Disease Center

You and I, diagnosed in our 40s have an even higher likelihood of developing other diseases (because our systems have been taxed for so long).

Go get 'em! You're a great Mom and it's going to take lots of energy and hard work--and you're doing the right thing!!!
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#5 Cara in Boston

 
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Posted 26 January 2013 - 07:28 AM

Find a good celiac doctor to test your son - and any other kids you have. All first degree relatives of someone with celiac should be tested regardless of symptoms (or lack of symptoms.) My doctor said every 2 years, sooner if symptoms develop. Allergy tests will not be helpful at all in determining if someone has celiac. The genetic test will only give you a "clue", and a very vague one at that. There are plenty of people without the common genes who DO have celiac and plenty with the genes who never get it.

My son had a very few symptoms (only a change in behavior) and was healthy in every other way. His blood test was positive (but unusual - only the IgG tests were positive, everything else was normal). His GI did the genetic test and found that he was NOT LIKELY to have it so he concluded that he didn't have it. By that time, I had tested positive, so we took him to a specialist. The biopsy was positive, so it was clear. If I had not continued looking, who knows how sick he would be now. In our case, the genetic test was not helpful at all, but actually misleading.

After all this, my biopsy came back negative, and my doctor said I DIDN'T have celiac. By that time, I was already gluten free and feeling GREAT. (I had all the classic symptoms for about 5 years). With a positive blood test, a positive response to the diet, and a child with celiac, how could he say I didn't have it?

The testing process is complicated and flawed and not entirely accurate. I would take your child to a specialist, have him tested, and when done, do a trial of the diet (strict) to see if you observe any positive changes. We thought our son had no other symptoms, but we saw gradual changes (sleep habits, dark circles under eyes gone, hair got thicker, he shot up 3 inches) that were probably related.

Trust your instincts.

Cara
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#6 slee11211

 
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Posted 26 January 2013 - 10:41 AM

Wow....thank you everyone for the wealth of information and incredible insights. Hearing concrete answers from others who have walked this road helps. Lisa, thanks for the list, I will copy it down and use it - he is still eating gluten regularly so at least there's that. And to everyone else, thanks for the encouragement.

I'm still not entirely sure why there is a discrepancy between docs/people who think the blood work and biopsies are an absolute necessity and those who say no. That's the only thing I'm still having trouble reconciling in my brain...I don't know which side to put all my faith in!! Even my mom, who is a nurse, is suggesting that I don't dare put my son through all that (bizarre - but then, she's in deep denial and refuses to think about how my diagnosis could affect either her or my father and didn't want me talking to my brothers about it at all). I find it very disconcerting that I can find doctors on both sides of this subject.

I'm beginning to develop my own, incredibly unscientific theory about all this: I'm beginning to wonder if it matters much at all if someone is positive or negative. Once someone in the family has come up positive...everyone else benefits from the new diet, period (and I'm talking about pulling the vast majority of grains out, gluten-free or not). Being Paleo has helped me to understand what grains do to our systems, all of them, Celiac or no. I envision a world not so far off where this becomes common knowledge and we look back on the strange time when the overload of grains was considered "normal" food and was making pretty much everyone sick. But even if my whacky theory were magically true (and trust me, I get that I might be in some early phase of understanding!), I would feel like a horrible mother if I don't follow common logic set up by the best doctors in the field. I thought mine was one of them, but I have to wonder now.

What would be a good resource for finding best doc for us in NYC? I feel lucky to be in such a big city, as I'm sure there are more than just Dr. Green here...(or should I just go there?).

Again, thanks to all for your packed responses. I needed the perspective!! :)
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#7 GottaSki

 
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Posted 26 January 2013 - 11:42 AM

I would contact the local celiac support group - there is one specifically for kids R.O.C.K. (I think) to obtain a good celiac savvy pediatric GI.
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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 :)


#8 clafran

 
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Posted 26 January 2013 - 12:36 PM

Hi Slee...

I am in your boat, to some extent -- my son is 6, skinny, frequent hives, "former" milk allergy, GI problems, sinus issues... I was just diagnosed (via blood test only) earlier this month, but I'm also the daughter of a full-on celiac with DH. My husband and I have been debating whether or not to test our son, and our 2.5 year old daughter, too. From the previous posts, I think I will. Our family practitioner is super outside-the-box thinker, so he will order any tests I think are beneficial.

Thanks for posting this -- you give me confidence!
Good luck.
Cathy
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#9 nvsmom

 
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Posted 27 January 2013 - 11:03 AM

If your son fears needles, perhaps using a distraction, like "Buzzy" could help. http://www.buzzy4sho...t-is-buzzy.html

I think its a good idea to get blood tests done. It's not overly invasive (not ideal I know) but it could give you an idea if he has an autoimmune disorder, and if so, then you can be on the look out for other autoimmune disorders since he has a 1/5 or 1/6 chance of acquiring another.

If he tests negative, try the gluten-free diet for a few months anyway. As you said, he could only benefit by following the diet (gluten-free or paleo). My three boys tested negative but I made them gluten-free anyhow. My oldest has had noticeable improvements in his health and mood; my youngest's bathroom habits have changed radically for the better; and all three of my boys have grown an inch or so since going gluten-free a couple of months ago... Could be a coincidence but I doubt it.

We eased into the gluten-free diet over a period of three months. I took it slow because I've got a real picky eater too. He would have lived on bread and crackers if I let him so it took some time to find some good alternatives; I'm glad we did though as he's eating better now than he used to.

Best wishes to you and your son.
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#10 slee11211

 
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Posted 28 January 2013 - 02:14 PM

Also thanks for the R.O.C.K idea! And the distraction method....good stuff.

And Cathy, good luck to you too. I've been stumbling along with this thinking that as long as he seemed healthy, it wasn't a huge issue yet. But I think after we get our own selves sorted (it was a lot of work for me, I was in bad shape!), we have to move on to the little ones. So this is all good info to be armed with. Hope you find your path free of too many obstacles.

Thanks to all.
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