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Member Since 04 Aug 2011
Offline Last Active Aug 11 2013 05:01 PM

Topics I've Started

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

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....

Can Anyone Offer Help For How To Find A Good Restaurant Where I'm Traveling?

05 November 2012 - 04:02 PM

It's a bit out of the way...Humboldt county. Will be there for a week at Thanksgiving, and given that it's such a health conscious place, I'm thinking they might have a number of restaurants that are either farm to table, or very Celiac friendly. Any help on how to go about researching? Any ideas would be helpful...not a ton of time to research, and my mom is very "fend for yourself" with the cooking....

Took Swig Of Edensoy With Wheat Barley Extract...

30 October 2012 - 07:30 PM

How scared should I be? I cannot BELIEVE that a soy milk had wheat and barley extract in it!!! Damn Storm (sandy), I grabbed only soymilk that was left on the shelf as an emergency measure. Opened it, had one mouthful and instinctively knew something was up...that was a taste I had not had for probably over 2 yrs....barley malt. Looked at the ingreds and sure enough. You learn something new every day, apparently. Had no idea that a soymilk could be glutened. Shoot. How bad will this be? I have not had a taste of gluten, not even a grain, in over a year. Was never one to get super sick (it ate away at me slowly), but still.

What Do You All Think About Idea That All Grains Must Go For Many To Heal?

13 June 2012 - 09:03 AM

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

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