Are Docs Skeptical Of Celiac Dx Without Biopsy?

[Irishgirl76]

Hi there,

My 7-year old daughter had an appointment with her pediatrician yesterday as I believe she has Asperger's Syndrome (which the doctor agreed on, and gave her the diagnosis). When she was examining her, she said "did I see in her file that she was being screened for Celiac?". I said yes, that she'd had the bloodwork done, and it came back positive. She said "yeah, I was gonna say... this girl needs a Celiac screening!" (based on her physique, I guess... size/weight/distended belly/thin arms). Kind of ticks me off that all these years of going to doctors with her various health concerns, and no one suggested Celiac... this doc notices right away, but after I had already insisted on Celiac testing... go figure! Anyway, on to the topic at hand...

I told her that her endoscopy was scheduled for Friday (tomorrow), and she said "Well, I see lots of kids with positive bloodwork but negative biopsies - she may not have it". So, even after noticing that she "looked" like a Celiac, thought she ought to be tested, found out that she had positive bloodwork, still doubted that she may have Celiac without that confirmational biopsy.

I told her that I had heard that biopsies can often result in false negatives... that damage can be patchy, they may not take enough samples, etc. She still seemed skeptical.

She is a fairly new pediatrician (young), so I was hoping she might be knowledgeable about false negative biopsies. When I mentioned it she seemed unconvinced...

Do most doctors still adhere to the biopsy as the gold standard? Her bloodwork was exceedingly positive (normal is <20, and hers were all >100 (they didn't even put the actual values, just >100... I'm guessing beyond that point it doesn't matter?)

So now I'm a bit concerned... are children more likely to have false negative biopsies, due to the fact that they haven't had as much time to damage their intestines? I am 100% certain she has Celiac, and I need the diagnosis in order to ensure her father takes it seriously (we are separated, and he lives at a distance, so visitation is 5x per year, 2 weeks at a time - I am completely at his mercy in making sure he follows the diet strictly).

She has all the signs - many years of loose stools, distended belly since infancy, colicky baby with reflux (more like projectile vomiting) that lasted over a year, stunted growth (she went from always being in the 50th percentile and above, to now being in only the 25th percentile), skin rashes, dark circles under her eyes, etc.

Anyway, I had accepted her very positive bloodwork as confirmation of her Celiac diagnosis, and now feel like I'm dependent on this biopsy to confirm the results.

Thoughts?

[StephanieL]

Many Docs will not DX with just the blood work. Dr. Fasano recently listed 5 criteria for dx Celiac. I believe he feels if you have 4 any 3 or 4 of the 5, you have Celiac. I can't find the article right now but I know a few of them are

blood work

biopsy

genetics (I think, not 100% sure on that one)

responding to the gluten-free diet

Again, maybe someone else here can help locate the article. (small baby demanding my attention)

[domesticactivist]

Here is the article with new criteria that i saw:

Open Original Shared Link

Regardless of what doc says, definitely do the diet after biopsy!

You might also look into GAPS diet, which was developed by a dr with an autistic son, and is based on the SCD which was also developed to help autism.

Our family has been on gaps for a year and seen major positive mental health changes with it as well as physical improvements. I recently did a gluten challenge and had a major crash with autism and ocd like symptoms after nearly two months of getting progressively worse.

[domesticactivist]

Ps my daughter's endocrinologist suggested retesting my dd for celiac because she is still small even though she was tested last year, has been strictly gluten free all year, does not have any of the genetics, and had completely negative blood work when eating gluten last year. It's good she knows to screen for celiac... Too bad she didn't understand there is no point in running those tests now.

[StephanieL]

Here is the info I was speaking of:

"One, you have to have symptoms we know are related to celiac disease

[mushroom]

Here is the info I was speaking of:

This is the entire article: Open Original Shared Link

Two quotes from this interview I really appreciated, coming from Dr. Fasano himself:

"Confining the diagnosis to a rigid set of rules, which, by the way, I contributed to wrongly, does not reflect the real gluten world out there". I appreciated that mea culpa since those rules contributed to the suffering of so many of us.

And this one:

":We can no longer call celiac disease a gluten sensitive enteropathy, which means the gold standard is the biopsy. To me it is not gold any more. I don't even know if it is silver or bronze. I believe it is copper".

Let's hope we don't have to listen to that particular phrase much longer

[StephanieL]

Sing it Mushroom

[beebs]

It depends where you are, here in Oz = you cannot be diagnosed at all, ever without a biopsy. Doesn't matter what your bloods say, or what the diet does, or how severe (even if they are life threatening) your symptoms are. Drives me insane!

[samie]

Yeah me and my oldest daughter were diagnose with it but my younger daughter only had positive blood work and biopsy was negative doctor said she probably is in the beginning stage of celiac but won't diagnose her.without th biopsy. It is aggravating cause her dad won't do the diet without the diagnose and I don't want to damage her any worse.

[mushroom]

It depends where you are, here in Oz = you cannot be diagnosed at all, ever without a biopsy. Doesn't matter what your bloods say, or what the diet does, or how severe (even if they are life threatening) your symptoms are. Drives me insane!

I can't even join the stinking COeliac Society because I don't have a a diagnosis. If that's the way they are, I don't want to

[beebs]

I can't even join the stinking COeliac Society because I don't have a a diagnosis. If that's the way they are, I don't want to

I joined still shroomy- the Dr just wrote a cert for severe gluten intolerance.

[mushroom]

Sing it Mushroom

The problem is, Dr. Fasano knows it, and we know it, but our medical 'professionals' are going to take another 10-15 years to catch up.

[Benshell]

Best way to answer you is to tell our story.

My now 8yr old was diagnosed with Celiac at age 5 via blood work (symptoms - frequent BM, lack of growth, big belly). The pediatric gastro wanted to do a scope - saying it was the "gold standard" of diagnosing celiac and it was the "norm". When I heard they put kids out completely, not a twilight sleep like adults, I got worried. I asked the dr what the outcome would be if it was positive - his response was that 98% of time time, the scope comes back positive for celiac when the blood work is positive and the result is having to go gluten free, then they recheck the bloodwork in 6 months to see if the antibodies have gone down. We suggested to him that she just try the gluten free diet and if her #'s go down in 6 months at the bloodwork, would that suffice as proof. He completely agreed with us and didn't fight us at all not doing the scope - he said better #'s would be proof but if it didn't improve he would have to scope her.

6 months later following a STRICT gluten free diet - no slip ups, no sneaking food, no contamination, her #'s were PERFECT. He said he has never seen anything like that - that there are always slip ups the first few months...he didn't realize he was dealing with an overly controlling OCD type of parent and child

We've followed the gluten-free diet with no problems. My daughter loves eating gluten-free, doesn't miss any food and realizes she's eating healthier than other kids. She's very smart, so her level of understanding is much better than other kids her age that try and sneak food. SHe has had a couple of "glutening" incidents due to contamination of potato chips at a party (other people were eating from it too) and at a restaurant. Otherwise, she's great and our family has gluten-free dinners every night (just easier to make). Otherwise we have a mixed household (gluten-free & not gluten-free) and just are very careful not to contaminate things - butter and condiments are labeled gluten-free or not, etc..

Good luck

[Irishgirl76]

Just a quick update... I got my daughter's biopsy results this morning and they were, indeed, positive. She said the villous atrophy was "moderate to marked". Is it weird that I am happy about an "official" diagnosis? lol. 10 more days until my own endoscopy, and until I can get rid of the gluten and start my recovery. Yaay!!

[GFSAHmom]

My son was >139 and the GI dr said he didnt even need to do the biopsy to confirm. He said, once it breaks the threshold of 100 it's absolutely positive. If the diet works and u get good results from your daughter gaining weight/feeling better/improving, that's the most important!!

[Irishgirl76]

My son was >139 and the GI dr said he didnt even need to do the biopsy to confirm. He said, once it breaks the threshold of 100 it's absolutely positive. If the diet works and u get good results from your daughter gaining weight/feeling better/improving, that's the most important!!

That's good to know... thanks. Although now that the biopsy is done (traumatic as it was), I'm glad we have the results and no one can refute them.

[NHyogagirl]

My daughter just had 14" of her intestines removed and I swear it is Celiac. Her surgeon says "no such thing". But another doc in hospital that is Integrative that trained under Andrew Weil said there are SO MANY FALSE negatives and people keep going on eating gluten and continuing to damage their intestines.

I can't get my daughter diagnosed since we have to go on gluten for 2 months and she absolutely can't do that. Just yesterday she had a reaction to seasoning on shrimp in a restaurant and was home sick all day with D and nausea.

Anyway, just wanted to post my thoughts about "false negatives" - my daughter will never get a diagnosis but we know for sure she can never eat gluten again.