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To Be Or Not To Be. . .

ptkds

By ptkds
in Coping with Celiac Disease

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ptkds Community Regular
ptkds
Posted

I was diagnosed w/ celiac through blood work a few months ago. I had decided not to get a biopsy done and I started the gluten-free diet. But now I have realized that may have been a mistake. My dd saw an allergist yesterday and he kept asking if my other dd and I had gotten a biopsy. Then he even questioned if it were really celiac since it wasn't "confirmed" w/ a biopsy.

So my question is, should I start eating gluten again and get the biopsy? I already know that I have celiac because I have a horrible, miserable reaction when I have gluten. But from a medical standpoint it seems like I need to have it confirmed so the dr's will be more accepting of mine and my dd's diagnoses.

What do you guys think?

ptkds

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RIMom Newbie
RIMom
Posted

My 4 1/2 year old was just diagnosed in December by blood test. We also got a lot of pressure from family and others saying it wasn't celiac until you did a biopsy. Finally met with the pedi gastro this week, and he said I have to tell you that this is the only true way to confirm it. He also said that having a positive blood test and having a positive response to gluten-free diet (which my daughter has had) is the other way to confirm it. He said we don't have to do the biopsy to have the diagnosis. He said there is no risk in adopting the gluten-free diet other than additional cost of food. Especially if she has responded positively to the dietary change. He said she may want to be biopsied in the future, maybe as a teen, in order to confirm that she has to continue with the diet.

I'm also considering the enterolab test rather than the biopsy. It's so much less invasive with no risk at all.

We also have an extensive extended family history of Celiac so the chances she has it are high anyway (she has three cousins, two aunts and probably her dad who have it.... dad hasn't been tested yet, but does much better when he is gluten free too, although doesn't respond dramatically to gluten in terms of getting sick etc).

I have just stopped telling people that we haven't done the biopsy and just say she has it. Everyone (school, friends parents, extended family) have been supportive, especially when I mention how much better she looks and feels (even though she was never really sick..... just low grade tummy aches often). Her coloring is better, she is happier, and her bowels have changed (are more formed). She has been very accepting of the diet as long as I can make adequate substitutions, which I have worked hard to do for her.

I would be happy to discuss my experience with the gastro more if you want to.

gfp Enthusiast
gfp
Posted
I was diagnosed w/ celiac through blood work a few months ago. I had decided not to get a biopsy done and I started the gluten-free diet. But now I have realized that may have been a mistake. My dd saw an allergist yesterday and he kept asking if my other dd and I had gotten a biopsy. Then he even questioned if it were really celiac since it wasn't "confirmed" w/ a biopsy.

So my question is, should I start eating gluten again and get the biopsy? I already know that I have celiac because I have a horrible, miserable reaction when I have gluten. But from a medical standpoint it seems like I need to have it confirmed so the dr's will be more accepting of mine and my dd's diagnoses.

What do you guys think?

ptkds

IMHO the time to have a biopsy is before going gluten-free.... the longer you leave it the less attractive it is.

Then he even questioned if it were really celiac since it wasn't "confirmed" w/ a biopsy.

Find yourself another allergist or take this one the literature and see if you can reason with them.

Start here and print out what is useful... Open Original Shared Link . if the allergist is not willing to make concessions then forget them and find another...

If the allergist hasn't read the articles on pro-s and cons of biopsy you have to ask if they are qualified to be treating you anyway.

You need someone on top of the disease, not someone you need to continually educate.

If your stuck for one then hopefully someone here will have a good well educated one close to you...

jayhawkmom Enthusiast
jayhawkmom
Posted

Is the allergist your doctor also? If not... he has no business asking you about any of your medical history or diagnosis. I do understand that family history must be taken into account. However, what if you were someone who chose a gluten free diet purely from a standpoint of health, rather than disease? Would he argue with you and tell you that a gluten free diet is unhealthy? Someone used this analogy with me yesterday... and it really helped. If I were a vegetarian and raised my children in that manner, I don't have to have a medical reason for it. So, if I chose to raise my children gluten free - with or without a diagnosis of anything, that should be my choice as their parent.

My blood tests were "iffy" - biopsy showed no villi damage. Did I catch it in time? Hopefully. Am I gluten free? You betcha.

I fully admit, I started to question the who issue myself, after being gluten free for a while. Then one day in December I ate some gluteny goodies at a baby shower, and I was sicker than a dog for days afterward. That was all the confirmation I needed.

Good luck with your decision. There are going to be strong opinions for either or. I don't have a strong opinion.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
My 4 1/2 year old was just diagnosed in December by blood test. We also got a lot of pressure from family and others saying it wasn't celiac until you did a biopsy. Finally met with the pedi gastro this week, and he said I have to tell you that this is the only true way to confirm it.

I've said this in other threads, so forgive me for being repetitive.

THis is like telling someone with a peanut allergy that the only true way to confirm the peanut allergy is to feed him peanuts until he has has an anaphylactic response. Then, and only then, will it be confirmed?

Come on, this is baloney. A biopsy confirms villi damage, yes--if the affected villi are biopsied. Remember, villi damage is often patchy. A lot depends on the doctor being able to choose an affected area to biopsy, and, if damage is often only visible under the microscope, the odds aren't great. Is villi damage the only problem celiacs face, or even the worst problem? Heck, no.

Take someone who does not have villi damage, but reacts badly to gluten ("gluten intolerant"). Feed him gluten long enough, and eventually, yes, there WILL be villi damage.

Why do doctors insist on their obviously gluten-intolerant patients poisoning themselves in order to CAUSE damage so the doctors can see for themselves? As gentleheart said so eloquently in another thread, whatever happened to "first do no harm?"

AAARRRGGGHHH!!

Okay. Rant over. :)

Carriefaith Enthusiast
Carriefaith
Posted

Going back on gluten may be difficult and unpleasant now that you've start the gluten-free diet... I would suggest getting a gene test done to see if you have a celiac gene.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Going back on gluten may be difficult and unpleasant now that you've start the gluten-free diet... I would suggest getting a gene test done to see if you have a celiac gene.

Given the number of people on this board who do NOT have celiac genes, yet still biopsied positive for celiac, I am not convinced that there is much value to the gene test. (Otherwise, I would agree that that would be a logical choice!)

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jayhawkmom Enthusiast
jayhawkmom
Posted
THis is like telling someone with a peanut allergy that the only true way to confirm the peanut allergy is to feed him peanuts until he has has an anaphylactic response. Then, and only then, will it be confirmed?

And, that's an even better analogy, one that I can identify with. I have a child with an anaphylactic peanut allergy. And, if someone suggested I give her a peanut just to "see" what would happen, I would laugh in their face and then tell them to get the h*ll away from me and my family.

Why do we allow doctors to make us feel as if we have NO idea what we are talking about when we say we can't tolerate a certain food, or groups of food?

Let's stop the madness! :o

kbtoyssni Contributor
kbtoyssni
Posted

A positive blood test means you have it. And I'm assuming from your reluctance to go back on gluten you've had a positive dietary response, too. You certainly don't need a biopsy to tell you what you already know. By the time a biopsy comes out positive, you've got so much damage to your intestines. I don't know why you'd want to do that to yourself. This doc needs to read some current literature on diagnosing the disease.

Some doctors only see the biopsy as the way to diagnose, but there are many out there who will accept blood tests or dietary response. If you have a doctor who is questioning your celiac, maybe a new doctor is in order. I wouldn't be able to see a doctor that questions me because I know they're going to be doing things by the textbook and be inflexible when it comes to alternate treatments. If there's one thing I've learned from my diagnosis, it's that this disease is anything but textbook!

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