First Time To Gi--conflicting Information

[JennyC]

My son's pediatrician ordered a full blood panel on my son and it turned out that he had very high tTG levels. He also has had all of the classic celiac symptoms: diarrhea 3+ times a day, abdominal bloating, failure to thrive, lack of appetite, ect. She told me that he has Celiac disease, remove gluten from his diet & to see a pediatric GI. After removing gluten all of his symptoms disappeared--I mean a complete turn around! (He's even gained 3 lbs in the last month!) Well yesterday was the big appointment. I expected him to push for a biopsy, but he spent the entire time trying to convince me to do it. Everything that the GI told contradicted what I have learned thus far.

In his opinion biopsy is the only way to diagnose Celiac disease. He said that high tTG levels could be caused by other diseases. (He couldn't name any & when I googled it all I came up with was Celiac disease.) He said that celiac disease is not a spotty disease--he always finds it in one spot. If he doesn't find it in that spot during the first and only biopsy performed, then one doesn't have celiac disease and the blood work was falsely positive. Then from that point a gluten-free diet is entirely elective.

It seems as though he was educated in the stone ages. I've read of people being diagnosed as Celiac without a biopsy, with a negative biopsy, and after multiple biopsies. My son had all the symptoms of celiac disease, he had the celiac-specific blood markers, and he couldn't be responding any better to his new gluten-free diet. I don't want to put him through hell for an entire month for a biopsy! I will be seeking a second opinion by another doctor at a different hospital!

Please share your insights. Any input will be greatly appreciated.

[Lisa]

Jenny:

Sounds like you did your homework. Good for you. As his blood work is positive, that is confirmation enough for celiac.

Keep him gluten free and watch him grow. I see no need to stick a tube down his troat to convince the doctor. Sounds like you are on the right track.

[wolfie]

I completely agree with Momma Goose. Since your son is already gluten-free and doing very well, skip the endoscopy & torture. He obviously has Celiac based on his blood work (ttg) and the positive response.

I think the only other thing that I have read about that can cause high ttg levels is liver damage or something like that. I also asked our Ped about this and he wasn't able to really give me an answer.

[mommida]

You have done the research. You have two valid positive results indicating Celiac. (blood work, and dietary response)

A gluten challenge at this point is risky. The damage being done, might not be enough for the biopsy to detect. The gluten free diet should have started after the diagnoses. Your child could end up severely dehydrated and need I.V. fluids (like my daughter in the same situation) Some say getting medical coverage and life insurance policies are complicated after their Celiac diagnoses.

The drawbacks of not getting the "gold standard official diagnoses", your child may not want to follow the diet if a nonsymptamatic phase happens.

Schools do not want your child having "D" or vomitting in school, they shouldn't give you any problems. Qualifying for lunch program to be gluten free would probably be the snag. (504)

Stick to what you know is right. You've done the research and you know your child.

L.

[ravenwoodglass]

All I can really add to the others is that I agree completely with them. This doc is an idiot IMHO. I don't think I would even look for a second opinion at this point. His blood work and dietary response are more than enough. People have also had very serious reactions from gluten challenges once they have been gluten-free for a bit that can be very painful, scary and potentially dangerous.

[kbtoyssni]

Good for you standing up to the doctor. It sounds like you've already more than convinced yourself that he's got celiac. I also didn't do the biopsy because by the time I'd done an elimination diet and figured it out I just wanted to get on with getting better.

[JennyC]

Thank you all so much for your support. I really hope that people with other diseases have a similar resource. Without you all I would probably be cross contaminating my son and feeding him malt-filled rice crispy treats!

I'm concerned about getting the official diagnosis only because I want him to be supervised by a specialist as a celiac patient, so that he will get the appropriate follow up care and be watched for symptoms of other diseases associated with celiac disease.

If when he's older he decides that he might not have celiac, then he can make the choice for himself to go back on gluten and get a biopsy.

I know there are doctors out there who will diagnose without a biopsy, and I intend to try to find one. If I'm not successful, then I will go through his pediatrician for follow up testing.

[Nancym]

Just remember that the longer he's gluten free the harder it will be to get a biopsy diagnosis. You may only have a window of a few weeks.

Also, what about asking for follow up testing of his ttg on the gluten free diet to confirm it goes down. Seems like that should contribute to the large, growing pool of evidence.

[mellajane]

I had been sick since I can remember...very very sick since 7. I am now 30. This celiac is still so new... I was told by a dr. not mine to stop eating wheat for a month I would notice a difference almost immedietly. I did. All of my test have come back negative.....Guess what this is the only thing that has worked in 4 years...I have given up on dr.s.This whole time my whole life I was allergic to wheat. It is a hard disease but the more you know and learn the better life will be.

[JennyC]

Just remember that the longer he's gluten free the harder it will be to get a biopsy diagnosis. You may only have a window of a few weeks.

Also, what about asking for follow up testing of his ttg on the gluten free diet to confirm it goes down. Seems like that should contribute to the large, growing pool of evidence.

Yes, I do want to get more blood work done. I expected that at his appointment, but all I got was a lecture. I will definitely request it at his next appointment.

Thank you for your advice.

[mommida]

I see your point about having your son treated as a Celiac patient. Have faith , there are some specialist that understand Celiac and know how difficult the diagnoses can be. Can you check with your local Celiac support group for an experinced specialist in your area?

L.

[JennyC]

I see your point about having your son treated as a Celiac patient. Have faith , there are some specialist that understand Celiac and know how difficult the diagnoses can be. Can you check with your local Celiac support group for an experinced specialist in your area?

L.

That is a great idea. I think that I'm going to look into that now. I'm sure there has to be one.

Thanks.

[ravenwoodglass]

One thing you should note is that most of the associated autoimmune and other health problems won't develop if he stays on the gluten free diet. The problems that most of us have are due to years of misdiagnosis and symptom relief only through drugs. Many celiacs gluten free are actually healthier than non-celiacs.

If your main reason for confirmation is because of that fear you may want to take that into consideration.

[JennyC]

Well, after reading another topic and calling the company I decided that I am going to get the enterolab testing done. I will not biopsy my son because I refuse to poison him for the sake of a test that produces false negatives. It is my sincere hope that I find a pediatric gastro that takes the full gene and stool panel along with previous symptoms and positive dietary response as "proof" of celiac disease. If not, then at least I know what is truly going on inside my son. I refuse to begin a repeated cycle of blood tests and biopsies. I know that this diet has helped my son.

I want all of those who have responded to my numerous posts to know that I am very grateful for the advice you have given. Thank you.