Advice Re: Biopsy, Please!

[ashmom2]

This is my first post here. My 2 1/2 year old is going for a consult this week with a peds GI for a small intestine biopsy to confirm celiac diagnosis. He is gluten-free now. I dread the process of putting him back on gluten for the biopsy, but you do what you do, right? Anway, it appears that we will also need to request same procedure for my 5 year old daughter. Her bloodwork has just come back with the same numbers as her brother's. Anyway, I'm wondering if anyone can give advice on the actual biospy procedure. Any prep recommendations? I'm new to the gluten-free world, but it appears it will be a lifelong journey for us *sigh*.

Thanks, ashley

[2Boys4Me]

Well, I can't help much because before my son's biopsy we were told by no less than three people NOT to change his diet. As far as prepping for the biopsy, he knew he'd go in with a nurse, they'd put a mask on his face, he'd have enough time to say "You don't know the power of the Dark Side" and then he'd fall asleep. We said that probably when he woke up they'd give him a popsicle and he might have a bit of a sore throat. He did get the popsicle and he did not have a sore throat. He was 5 1/2 at the time.

[VydorScope]

I am not a doctor, I am just a parent that has been there. If I could do it over....

1) I would not do the biospy. It will give NO new information over the blood test.

2) The gluten-free diet has already begon to heal them, almost garrenting a non-postive bisopy.

I would suggest you forget the biospy and get both kids on the diet, and yes its for life.

Talk to your doctor of course, but if it was me, I would not to the biospy knowing what I know now.

[KaitiUSA]

I completely back up Vincents post before mine.

He would have to get back on gluten for a long time and it's not worth it. Even if the biopsy came back negative he can still have celiac. You see biopsies can rule in celiac but they can't rule it out because there can be sporadic damage they miss or if celiac is in beginning stages or if you have been gluten free and allowed healing there could be no damage.

I got a diagnosis with just a blood test and gene test. My doctor saw the numbers and said the biopsy would pretty much be a waste of time because he said he thought I had it no matter how the biopsy turned out. Just my opinion

[Guest nini]

I agree with Katie and Vincent, and I think the biopsy is unnecessary and dangerous. The blood work is plenty sufficient to dx on it's own along with positive dietary response, in fact, how they respond to the diet is a more accurate diagnostic tool than either the blood tests or biopsy. Those tests are subjective to interpretation.

The biopsy can only confirm the diagnosis of Celiac, it cannot rule it out ever. If the Dr's try to tell you that it can rule it out, they are sadly mistaken and relying on outdated information.

You would have to put him back on gluten for far too long for a biopsy to even have half a chance of being accurate and what for? Don't do it. Keep both kids gluten free, get you and your spouse tested and get on with a new healthier life for you and the kids.

[ashmom2]

Wow ... thanks for all of your responses! Let me add some more info.

My son, Owen's, bloodwork was inconclusive. His IGg was high (58), but the IGa was inconclusive. According to the doc, he does not produce enough IGa for his body to react to the test. Does that make sense? By the way, he's also alleric to eggs, apples, strawberries and nuts. My daughter's test numbers were exactly like my son's. Her IGa numbers aren't in yet, but the others were just like his.

So, the doc says we should do the biopsy b/c the blood test was inconclusive. Does that change anyone's opinion? I have felt like we need to have an "official" diagnosis for school, taxes, etc.

The diet has absolutely helped. On gluten, he gets that flesh eating diaper rash, leaving his bottom bleeding. He is also much fussier on gluten. Off gluten, he's nicer (though he's 2, so that's all relative, right? ) and his bottom is totally healed. He also has no diarrhea off gluten.

We just got my daughter's numbers, so haven't gone totally gluten-free with her. We'll see what happens there.

Meanwhile, I am laid up having had diarrhea for one week with no explanation. I've been in the ER three times. Guess it's time for me to get tested, too, huh? Anyway, on Wed they're going to run the DNA tests, so we'll find out then, I guess.

Thanks for all the advice. I'm sure you all remember the head spinning that went on in early diagnosis. That's where I am!

ashley

[VydorScope]

I am not a dotor, just a parent thats been there, I just want to restate that.

I do not feel the biosopy is a good choice REGUARDLESS of the blood test. The biospy adds no new information. Think about it this way...

You do the bisopy, and it comes back POSTIVE, well okay that tells you that he has celiac disease, but you already knew that from the blood work which was confirmed by the diet.

You do the bisopy and it comes back NON-POSTIVE (doc may call it negative, but thats not the correct term), well then the doc will normaly say "try the diet and see what happens", well DUH, you already did that and it confirmed the blood work for you. Again blood work plus the diet in your case confirms celiac disease.

So then you tell me, what good was it to put your child through that with all the risk (though small, they exist) associted?

The biospy is required for some insurance polices to get coverage for other celiac disease related tests (nurtient deficincies, etc), but other then that theres no good reason to do the biospy for celiac disease. The only reson to do an endoscopy at all would be to look for ADDTIONAL complications (ulcers, etc) that could be there if there was good reason to suspect it.

Agian, I did it with my son, but that was before I knew anything about celiac disease and if I had to do it over, I likly would not have. The diet is the safest and most reliable test in those that show odvios symptons. IMO.

[Guest nini]

just from personal experience there is no good reason to have the biopsy. Yes borderline results confirmed by positive dietary response is enough. My daughter's blood test results were negative according to the ped. GI, but I also found out he did not do the complete celiac panel. On the other hand, her response to the diet was miraculous. She had the same horrible diaper rash, diarrhea, even constipation and horrible awful kicking screaming hitting fits, flat out violent and uncontrollable. On gluten she's a terror, off of it, she's the healthiest kid around and an absolute angel.

I was officially dx'ed with Celiac by my GI and subsequently was DENIED health insurance coverage because of a pre existing condition, which to me is totally stupid, because I was sicker before the dx, and healthier after while following the diet.

As far as school is concerned, I got my daughter's pediatrician's support on trying the diet after getting the run around from the GI, (he refused to do the biopsy on her) she agreed to a three week dietary trial, after 1 week I had a totally different child, so her pediatrician wrote a note for school that she has been dx'ed with gluten intolerance, which of course is treated exactly the same as Celiac... gluten free diet for life.

Do what you feel is necessary, but as a parent of a celiac child myself, I feel the biopsy is not worth it at all and does not answer all your questions. If there is no damage yet or not enough damage to be spotted with the biopsy, the Dr will not dx it, and will tell you to keep your child on gluten (ie: poison) until later on when there is sufficient damage for them to claim sprue. Dr.s for the most part won't acknowledge this disease in the early stages, which is what the blood work indicates, so you have to be your child's advocate and be willing to recognize that the medical community is (for the most part) behind the times. There are a few Celiac experts out there that are questioning the need for the biopsy in the face of dietary response, and most of us who have been there have either been lucky to find a brilliant Dr., were so sick that the damage was evident, or had to take the situation into our own hands and listen to what our bodies and our children's bodies were telling us.

You do not need a Dr.s permission for this diet, and yes, I understand the classic Medical standard for Dx is the biopsy, but that again is based on outdated information.

[Becky6]

Both my daughter and I tested neg for celiac. But because of our symptoms they wanted us to get a biopsy done. I had found this board and decided to try gluten-free for both of us instead. Well, we were feeling a lot better from being gluten-free. My daughter has gained 5 lbs in 5 months and is no longer lactose intolerant. They diagnosed her with celiac due to positive dietary response. They may not have celiac but they may be gluten intolerant and should still stay away from gluten. It is your choice but I could never do it because I knew what gluten did to her body and didn't think that eating it again for a biopsy was worth her pain. Good luck, it is a tough decision.

[ashmom2]

Thanks for all of your advice. My son is on a gluten-free diet with great response and his pediatrician is willing to write a "gluten intolerant" dx now. I will go meet with the peds GI folks at Walter Reed on Wednesday, but with your wonderful advice at the forefront of my mind when I do so! Thanks again so much for your advice. I appreciate it!

ashley

[VydorScope]

Thanks for all of your advice. My son is on a gluten-free diet with great response and his pediatrician is willing to write a "gluten intolerant" dx now. I will go meet with the peds GI folks at Walter Reed on Wednesday, but with your wonderful advice at the forefront of my mind when I do so! Thanks again so much for your advice. I appreciate it!

ashley

I would stick with the gluten intolerant dx and not worry beyond that. The treatment is identical, gluten-free for life.

Good luck with your GI apt!

[kabowman]

As to the schools - I have not had any problems with my youngest son - HOWEVER, he is only lactose intolerant but the cafeteria ladies and the nurse have been excellent with everything. Just about everything on the menu at his school has some type of milk in it so he has to be very careful. My other son's food intolerances are easier for him to deal with at school so we don't worry about him - he has tested negative.

I know others have kids in school with the gluten-free issue and I have seen some that are good and some that are not - I don't think you have to have the celiac disease dx for school if they are willing to work with you.

[AndreaB]

I'm new to all of this. I had allergy testing done to see what my infant son was allergic to as he broke out with eczema on his face. I'm allergic to soy;wheat & wheat gluten/gliadin;dairy as well as a few others. I was going to go in for more testing as well as having my family go through allergy testing until I read an article on celiac.com by Dr. Fine. He heads up EnteroLab and does IgA testing on stool which is more reliable than biopsies as it can catch a reaction to gluten long before serious damage has been done. They have a group of tests they run and you don't have to go back on gluten to go through this. Check it out at www.enterolab.com. I'm going to run my family through these tests instead of allergy tests.

[ashmom2]

I'm new to all of this. I had allergy testing done to see what my infant son was allergic to as he broke out with eczema on his face. I'm allergic to soy;wheat & wheat gluten/gliadin;dairy as well as a few others. I was going to go in for more testing as well as having my family go through allergy testing until I read an article on celiac.com by Dr. Fine. He heads up EnteroLab and does IgA testing on stool which is more reliable than biopsies as it can catch a reaction to gluten long before serious damage has been done. They have a group of tests they run and you don't have to go back on gluten to go through this. Check it out at www.enterolab.com. I'm going to run my family through these tests instead of allergy tests.

Andrea:

Thanks for the info! I'll go check it out!

~ashley

[TCA]

I'm just another parent in the no biopsy corner. My son went through 2 negative biopsies before I knew any better. Tests on kids under 5 are most often inconclusive or false negative. His blood work was also inconclusive, with very hight IGg and only slightly elevated IgA. The diet trial has worked miracles. If your son is responding to the diet, there is your confirmation. I'm not doctorphobic, and I don't think the biopsy is a big deal really, but if he's already been gluten-free it's probalby not going to help you any. Everyone has to make their own decisions, but I've been there and it wasn't worth it. After going gluten-free for breastfeeding my celiac daughter I saw a drastic improvement in my health too. You might find that's what your problem has been this week too. Good luck and welcome!

[2kids4me]

Go with the decision you feel best about. Each family is individual. We chose to do the biopsy because both children had other autoimmune conditions and especially with our son who is diabetic, we needed to know for sure that he was celiac because it impacts his diabetes mangement. The GI doc was very sympathetic about having to eat gluten up until the biopsy - he said the equivialent of one slice of bread was enough. The blood tests were weak positive yet our daughter had changes in the intestine found on biopsy that left no doubt about the diagnosis. Our son had minimal stomach complaints but his intestine had almost no villi left. Again we have multiple immune mediated disorders and they need to be sure the symptoms were indeed from celiac disease and not something else (another immune disorder) that was causing the neurologic symptoms we saw in both children. Both kids were older than 5 when the biopsy was done - and I agree (and the GI doc) with the other posts that say the biopsies are unreliable in young children.

We have a son (11 yr) diabetic/celiac - diabetes diagnosed Sept 2003, celiac confirmed by biopsy Aug 2004. A daughter (13yr) diagnosed hypothyroid age 4, Hypotonia at birth, Aspergers at age 7, Kawasaki June 2003, celiac May 2004, stinging insect allergy diagnosed by RAST test 2005 (after reaction to wasp sting prior). I have insulin dependent diabetes (25 at diagnosis), hypothyroidism, and pernicious anemia. We are refered to as a family with polyendocrine failure because 3 family members are affected with multiple immune mediated diseases.

The kids are doing very well since going gluten-free. Son had severe joint pains, slow growth and bedwetting prior to going gluten-free - all gone except minor flares of joint pain. Daughter had severe migraines, stomach aches and back aches. Only come back if accidental gluten ingestion. Daughter is most sensitive to trace amounts