Any benefits for an "official" celiac diagnosis?

[Mother of Sons]

Without it in most cases you don't have a celiac diagnosis and you don't have anything to measure against. Depending on her personality it may be hard for her as a teen or young adult to see the benefit of staying gluten free which can be very dangerous physically. Also in the future if she or you did decide to get a full diagnosis she will have to undergo a period of heavy gluten exposure which is frequently pretty awful. The intestines can heal on a strict gluten free diet so I can't imagine wasting time on a biopsy without gluten. If she were to ever need accommodations at school you would have a harder time without a diagnosis. Not everyone has physical symptoms of celiac but can have lots of damage. There is no way to know that without a biopsy. So there are reasons. Whether they apply to your kid or not

My symptomless niece had a biopsy, so did my daughter.

[rjy9343]

Echoing MOS about having a diagnosis can be very helpful in the future. Not having an official diagnosis makes it harder with relatives who decide it is all in your head and feed her the wrong food. (I nearly started world war three over this with my in laws). It also makes schools and daycares are lot more aware of what your daughter eats since they can now be sued. It also allows her to have food that is safe.
If those don't apply to you, then I wouldn't worry about it. Even as a teen or young adult it's possible that she would have to be retested because the test used would be considered unreliable or the diagnosis would be out of date.

[WanderingJuniper]

We were just talking about this in our family yesterday because our 11yo was accidentally glutened over the weekend. It was my fault and it was such a little amount but she is getting more and more sensitive the older she gets. So far we have not been convinced a biopsy would be more beneficial than traumatic.

We can and have had a plan in place with the school without a official Dx. The older she gets the more of a non issue it is at school because less and less revolves around food.

[greendelight]

Well, I was one that had a positive genetic marker and antibodies test and was scoped, and it turns out I don't have it.

I think it could be helpful afa knowing just how strict you have to be...especially when eating out (cross-contamination worries, etc.). And knowing the extent of damage.

It's a risks/benefits thing for sure.

[milkmommy]

lots to consider. For now I feel okay in not doing more testing. She is home schooled so at least for now that's not a big issue. We are no where near extended family so that exposure is limited and we have support thankfully in that area.

Oddly enough this conversation came after discovering a former college classmate and "friend" of mine faked having cancer and convinced her family and many others that her youngest child had a terminal form of Cystic Fibrous, she was poisoning her child tampering with medical tests and its even believed she poisoned a co worker. She was found guilty of tampering with her daughter medical tests and took a plea deal and is now serving a 10 year prison sentence.

So yea... it brought up how much do we allow.

[LilacPhoenix]

Munchausen and Munchausen by Proxy Syndromes

[milkmommy]

Originally Posted by LilacPhoenix

Munchausen and Munchausen by Proxy Syndromes

yes. So sad

[knitlove]

Oh that is a crazy story.


For dh he has had no testing for gluten sensitivity or celiac. I got him to try gf almost 4 years ago. He is not willing to do any test that will require him to eat gluten first. I am going to try to find some one who can do blood test for some things for wiggle worm.

[milkmommy]

Originally Posted by greendelight

Well, I was one that had a positive genetic marker and antibodies test and was scoped, and it turns out I don't have it.

I think it could be helpful afa knowing just how strict you have to be...especially when eating out (cross-contamination worries, etc.). And knowing the extent of damage.

It's a risks/benefits thing for sure.

So far we haven't had major or obvious situations with cross contamination. So like I can feel her at most resturants as long as we just omit the obvious stuff. I don't need to use separate cook ware at home etc.. She hasn't had gluten exposure reaction after like using play dough or other handling basic gluten products.
She had minor accidental gluten exposure ingested and not reacted. Like last weekend she had some icecream at a birthday party. The hostess for genera health reasons tends to keep her family gluten free and knows my DD is and respects it so I didn't think twice. We both were thinking it was Chocolate chip but opps it was chocolate chip cookie dough.. She had about 2-3 bites when we noticed... Thankfully she never seemed to react from that though.

[Mother of Sons]

If she does have celiac, the lack of outward symptoms doesn't mean her intestines aren't being damaged.

[greendelight]

Originally Posted by Mother of Sons

If she does have celiac, the lack of outward symptoms doesn't mean her intestines aren't being damaged.

This.

This was the deciding factor for me to be tested. If she does have it, it's so much more than avoiding obvious gluten.

[ArmsOfLove]

Originally Posted by cbmk4

In Europe, I understand that a positive antibody test (anti tissue transglutamins or endomysial antibody) in the face of symptoms of gluten sensitivity is enough for celiac diagnosis. My jaded self wonders if the only reason American GI docs are holding to the necessity of a biopsy to establish the diagnosis is that they can get paid extra for it. Of course, there may be other reasons that endoscopy might be helpful in individual circumstances.

This is my understanding of what the current protocol is here with some specialists. You have a positive blood test you have a diagnosis. I would give it as a current dx and when asked tell them you had a positive blood test and the change you saw in her when you removed gluten.

Originally Posted by bananacake

If you have a diagnosis, GF food is tax deductible.

Of the difference in cost between the gluten and gluten free foods in stores in your area. and you have to track the costs of both for the whole year to show the difference. At least that's what I was told by an accountant when I looked into doing it. SOOOOO not worth it.

My allergy doctor mentioned wanting to reconsider going back on gluten to get a current read of how my body is reacting and I told him I was afraid I'd die if I went back on it for the amount of time I was told I needed to (6 months was the last number I heard). I also heard 2 weeks to give the body time to have a reaction but I have reactions within hours and in an interesting twist of irony I was exposed to gluten at a restaurant the other night and when I went in for lab tests the next day, unbeknownst to me my GI doctor had ordered the celiac blood test. Who knows, maybe they will get the info they want without me doing more. I hope so!

Anyway, I would talk with some specialists now and see if they will take that blood test from before as official and work with that.

---------- Post added at 09:33 AM ---------- Previous post was at 09:31 AM ----------

Originally Posted by Mother of Sons

If she does have celiac, the lack of outward symptoms doesn't mean her intestines aren't being damaged.

right - one of the horrifying and amazing things about gluten intolerance is that damage can be done to intestines, organs or glands over time until something happens and suddenly you're thinking you're having a heart attack or dealing with hypothyroid, etc.

Also, they tend to measure gluten intolerance on a scale now and "celiac" means "it's so bad that you have identifiable damage" but "gluten intolerance" means you just don't have it yet.

[DahliaRW]

They take a very small sample when they do the biopsy. If they happen to get a spot that's not damaged yet, you could get a false negative. Studies have shown that the villi can repair and grow healthy again without exposure to gluten.

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[Mother of Sons]

The Drs here take close to ten samples, not just one.

[marigold]

Originally Posted by DahliaRW

They take a very small sample when they do the biopsy. If they happen to get a spot that's not damaged yet, you could get a false negative. Studies have shown that the villi can repair and grow healthy again without exposure to gluten.

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This is one reason why I've never tested my children but having no diagnosis is really hard because even Drs phoo-phoo you. The other reason I've never tested my kids is that my dh got the blood test (his Mom and 2 sisters are diagnosed celiac) and it came back negative. We carried on as usual and 5 years later we started cutting grains for other reasons and what do you know he reacts horribly when he gets exposed to it. Once he was having a really horrible day - like useless, can't think straight, sitting on the toilet but doing nothing - and I kept asking what's the matter with you? He didn't know. Finally after supper he starts picking up and a while later say "I think it is because I had communion bread yesterday" Anyways, my point is if the tests are that unreliable (and even the experts claim they are) why should we subject ourselves (or our children) to them.