gluten-free Diet Before Biopsy

[my3kids]

My daughter was diagnosed approximately three weeks ago through ttg and IGA gliadin blood work which were indicative of celiac disease. I am now offically confused as my pediatrician said do the gluten-free diet and "let's see how she does". Now everything I've read says that the only way to definitively diagnose celiac disease is through biopsy and we should not go gluten-free until biopsy. She has an appointment with a pediatric GI doc in a few weeks. Do I go gluten-free or wait until the GI appointment? We have been gluten-free since the blood work (I have it too).

Also, just read a book by Dr. Peter Green, director of the Celiac Disease Center at Columbia University that states you don't need to use gluten-free lotions and shampoos as gluten in only damaging when ingested. What's the deal with this? Please advise.

[happygirl]

You may want to call the ped GI and tell his nurse your concerns. You do not want to go gluten free before the biopsy. See if they can push your appointment up.

It mainly depends on if you want to proceed with the biopsy (which can look for things other than Celiac).

[my3kids]

I am confused. My daughter was diagnosed approximately three weeks ago through bloodwork (ttg and IGA gliadin were positive for celiac disease). We have started a gluten-free diet but am now finding that we should not go gluten-free until diagnosed through biopsy. She will see a pediatric GI doc in a few weeks. Should I wait to see him before we go gluten-free or continue to be gluten-free and see what he says?

Also, I recently read in Dr. Peter Green's book Celiac Disease, A Hidden Epidemic, that gluten in only harmful when ingested and that it is not necessary to switch to gluten-free lotions and shampoos. Please advise if this is true. Thanks everyone for your continued guidance. I'd be lost without this website.

[PaulaHayden]

Hi,

Quite frankly, the biopsy is overrated and sometimes inconclusive if not wrong. Personally, I would be happy with the blood work and get on with life. The only other things that a biopsy would pick up on are h-pylori or other irritations such as gastritis etc. Chances are all of what it might pick up on will be corrected with the gluten free diet. And typically in a child this young there is no real damage yet.

I would ask yourself this question...Would having the results of the biopsy cause me to do anything differently? If you have Celiac and your childs blood work is positve...quacks like a duck.

Good Luck..Paula (mother of 3, grandmother of 1 Celiac)

[Lisa]

I am confused. My daughter was diagnosed approximately three weeks ago through bloodwork (ttg and IGA gliadin were positive for celiac disease). We have started a gluten-free diet but am now finding that we should not go gluten-free until diagnosed through biopsy. She will see a pediatric GI doc in a few weeks. Should I wait to see him before we go gluten-free or continue to be gluten-free and see what he says?

Also, I recently read in Dr. Peter Green's book Celiac Disease, A Hidden Epidemic, that gluten in only harmful when ingested and that it is not necessary to switch to gluten-free lotions and shampoos. Please advise if this is true. Thanks everyone for your continued guidance. I'd be lost without this website.

You already have a diagnosis for Celiac through your daughter blood work. The biopsy may or may not confirm celiac, but it can determine the level of damage done to the intestines. She does have Celiac and she should be on the diet. You are doing okay, so don't doubt yourself. Children are resilient and they heal quicker than adults.

Gluten must be ingested to be harmful. Children especially, tend to put their hands and hair in their mouth. You want to exclude all possible exposure to gluten through shampoos and lotins.

I have the utmost respect for mothers of celiac children. It's much harder than being an adult with Celiac. Quick heath to your daughter.

[my3kids]

Hi,

Quite frankly, the biopsy is overrated and sometimes inconclusive if not wrong. Personally, I would be happy with the blood work and get on with life. The only other things that a biopsy would pick up on are h-pylori or other irritations such as gastritis etc. Chances are all of what it might pick up on will be corrected with the gluten free diet. And typically in a child this young there is no real damage yet.

I would ask yourself this question...Would having the results of the biopsy cause me to do anything differently? If you have Celiac and your childs blood work is positve...quacks like a duck.

Good Luck..Paula (mother of 3, grandmother of 1 Celiac)

thanks for the info. I am an RN and feel that based on my history and her bloodwork, there may be no reason for the biopsy. Is there another disease that would cause a postive ttg? (her level was really borderline but she has basically stopped growing at 8 years old).

Also, what about the lotions and shampoos - any insight?

[happygirl]

(I merged the two threads together since they were identical)

There is a lot of differing opinions on the "personal care" products. If it is anything that you could ingest by chance, some feel its worth it to keep it gluten free. Some people only use gluten-free products. Others don't use gluten-free products. Its a personal decision, but for some, it makes a world of difference.

[Crishelle]

The only problem with not getting a biopsy is that it is harder to get a DR's note. If your Dr is willing to give you one without the biopsy, no problem. You need that Dr note though for both the insurance and school. I made the mistake of going on gluten-free diet before diagnosis, now the insurance won't cover the extra yearly tests and no GI Dr will take my daughter or I. I can't put us back on gluten because part of my many symptoms included seizures....

Anyway, I would check with both docs before deciding for sure!

[PaulaHayden]

thanks for the info. I am an RN and feel that based on my history and her bloodwork, there may be no reason for the biopsy. Is there another disease that would cause a postive ttg? (her level was really borderline but she has basically stopped growing at 8 years old).

Also, what about the lotions and shampoos - any insight?

One of the major problems with the blood tests and biopsies is that they are not 100% accurate.

Especially in children! Most test negative until the damage is severe. Unfortunately the labs are known for not being very accurate either.

My children were all tested traditionally-bloodwork/biopsy. My son was negative at 10 yrs old..much, much worse at 17 and hugely positive! When his son showed horrible symptoms at a year old the pediatrician did the blood work which was negative. Again, horrible symptoms...pediatrician said he believed that the child had it...he is now gluten free and great.

I went thru Enterolab for myself. I trust their results as well.

My eldest daughter cannot use certain skin care products. She has Celiac and what seems to be a soy intolerance. We believe that the skin issues have to do with the soy though. The rest of us do not have issues with skin care products.

Ironically, I too am an RN. I think that it makes it worse when dealing with our families. We know too much and when you mix that with emotion....

Best Wishes, Paula