To Biopsy Or Not?

[katiejhawk]

My 4-year-old son was diagnosed almost 2 weeks ago with type 1 diabetes. We knew they were going to do blood tests, so we wanted to make sure that they tested for celiac disease because I have it, as does one of my two diabetic brothers. His ttg came back Friday at 153 (with anything greater than 10 as positive). We had him tested almost 3 years ago at his 2-year checkup and the test came back within normal range.

He started life in the upper percentiles and has gradually come down to the middle of the pack. Most of his classmates are at least half a head taller.

So my husband and I wonder, given the accuracy of the ttg (better than 90%), the family history and his shorter stature do we really need to put him through the biopsy as the doctor recommends?

We appreciate any thoughts and advice. Thanks.

Katie

[MomandDadtoOGS]

Hi Katie-

I personally would do the biopsy if the ttg was that high and with the known relationship between JD and celiac disease. Our 3 year old just had the biopsy done on 10/27 and it wasn't that bad at all. The IV was the worst part. She was only in the procedure for about 7 minutes and was running around by the time we left recovery. We did ours through CHOP and had a great experience. I'm actually scheduling a GI appt. for myself after seeing her handle it so well.

[Jestgar]

If you're going to be gluten free anyway, does the biopsy really matter? What would change if you did it?

[ACottrell]

I opted not to do the biopsy and we don't even have the family history of it. I think it is a bit too invasive for kiddos and from what I hear from the ladies on this board, it can only rule it in, not out. Apparantly, false negatives aren't uncommon, so I don't see the point. I would just try the diet, like the pp said.

[key]

My son had already been through so much testing, I was quite tired of testing and they also wanted to do a colonoscopy too. I couldn't do it. The diet changed him so much , there is NO question that he has celiac disease to us. But it is up to you. If you are going to doubt that he has it and your doctor isn't going to be supportive, then maybe you should. I didn't need my doctors support, but he did diagnose him based on his positive turn around.

There are other people on here that their doctors didn't even want to biopsy them, because their blood tests were so positive.

I know you are just getting suggestions, but ultimately it is what you are comfortable with.

Monica

[jerseygrl]

My mom was celiac, and when my 6yo daughters blood test were positive, I debated the biopsy dilemna too.

We decided to go for it mainly because it gives you a reference point to go from (the amount of damage)

Honestly, thinking about the procedure before hand was MUCH worse than the actual event.

Our daughter sailed through the procedure, never knew it happened (although we told what would happen in terms she

could comprehend) The hardest part as a parent is going into the OR with her and watching her count

backwards and then fading into sleep. However, the procedure was over in 10 minutes and afterwards

we were so glad we did it.

For us, knowledge was power, and knowing she IS positive, not just a theory, made it very real and our

commitment to keep her gluten-free at all costs even stronger.

[skipper30]

We did the biopsy...only after 6months of no one knowing what was going on and 2 negative celiac blood tests. But we weren't looking for Celiac. Everyone was suprised by the diagnosis. We were tired of routine bloodwork that never showed anything other than anemia. And had we been more educated at the time...might have realized what we were dealing with.

Cooper was 3 at the time of the biopsy...they gave him a sedative(through the skin) before they did anything. He was already quite loopy by the time the IV was put in and didn't seem to notice. He came though fine. The worst was him coming out of the anesthesia(sp?)

To biopsy or not is a very personal decision. Go with your gut. We were grateful for the results that we got. At least we finally had an answer.

[jen2be2]

We just got the bio. done on our 18month old. She was so sick that I could not risk not having Celiac confirmed as the reason why she was so ill. (Her blood work came back at 165).

She had no problems with the bio. at all. It was wonderful to have the paperwork that confirmed that it is Celiac and now we know for sure what the problem is and we do not have to worry about it being something more severe.

Oh and on Thursday, we also found out that another one of our kids also has it as well. Her # was 216 and she has no symptoms.

[Charlotte's Mom]

I decided against a biopsy for my daughter. The blood tests were positive. The gastro dr just dismissed us when I told him no.

I figure if the biopsy cames back positive, the gastro dr will just say he was right, continue to follow a gluten-free diet.

If it comes back negative, the dr will explain why it could be negative when the blood work is positive. He will talk about sample error and stages of the disease. Then he will say he still thinks she has it despite the negative biopsy and suggest it be done again in 6 months, and continue to follow a gluten-free diet.

And because my daughter has other medical issues, we would need to consult with an anesthesiologist, and he would have to get an OK from her pediatrician and her nephrologist.

I just went over this with her pediatrician today. He agreed my thinking on it is right.

Then I asked him what does he think the gastro dr would say if we didn't have health insurance to cover a biopsy, and he looked surprised, laughed, and agreed with me.

So either way, we would be told to continue with a gluten-free diet. What would be the point of the test?

[ACottrell]

Then I asked him what does he think the gastro dr would say if we didn't have health insurance to cover a biopsy, and he looked surprised, laughed, and agreed with me.

Oh, that is priceless!

[Cam's Mom]

My 6 year old daughter was diagnosed last year with both JD and celiac disease. We got the diabetes diagnosis first and started her on multiple injection therapy and then she was unbelievably sick for the following 6 weeks. The brilliant pediatrician said "I am so sure that it is viral that I would stake my reputation on it and am going to write you a lab slip just in case you want to prove me right".

Well, that arrogant jerk did not even put the celiac panel on the darn lab slip. Long story short, when the JD was diagnosed the celiac disease panel was tested but the hospital never sent to the results to anyone - when I finally got savvy enough to ask specifically for all the results regarding celiac her ttg was 181.

We did have the biosy and as so many others have said, it was not so bad (for her). I think that it is important to have the biopsy particularly when you are dealing with other issues at the same time. It is very hard for us to know what is what with high blood sugar or low blood sugar there can be stomach aches, head aches, mood swings, etc. so it is almost impossible to know if there has been some hidden gluten or other things going on. Also, once going gluten free you are not going to want to go back to a gluten challenge to get the info later. Also, gluten free flour is significantly higher in carbs than wheat and makes managing blood sugar a real challenge - I really recommend having as much info in you arsenal as possible.

Also, an interesting note. My son who is my daughter's twin does not have diabetes or celiac and does not carry the gene for celiac - so, one never knows. Also, I have to say that celiac makes diabetes look like a walk in the park and the combo is pretty tough! Is he showing any symptoms other than short stature? Good luck!!

[chrissy]

i just had a scope done recently and i don't remember a thing. three of my kids have had them done and didn't remember a thing. the doc even let me stay in the room during one and watch the whole procedure. with JD and a Ttg that high---i'd say it is a safe bet that your child has celiac disease. me, personally, i would have the scope done, but i know alot of people feel differently about them.

[Lisa]

Not having children with celiac, I hesitated to post. I had the endoscopy exam and biopsy and it was a non issue for me other than the anxiety before hand.

I do want to add something. Insurance is an important factor here with an official diagnosis. If you have a laps in your insurance policies, perhaps from a job relocation or other, some insurance companies may consider Celiac a pre-existing condition and some may deny benefits.

I CURRENTLY have insurance, but the airlines have taken everything else away, I expect that to go as well. Getting new health insurance on me may be very difficult and very costly.

Just a little food for thought.

[katiejhawk]

A correction, and more information - We had P.J. tested 2 years ago, not 3. His ttg was 4, with anything greater than 15 being suspect. So less than 2 years later, he went from 4 to 153 (w/anything greater than 10 being suspect).

Cam's Mom - P.J. has complained lately of stomachaches, but it's tough to know whether it's a celiac thing or a high blood sugar thing. He's always had BMs that haven't seemed quite right to me.

Momma Goose - No one has denied me coverage since diagnosis. I was covered at my previous job during diagnosis and have since moved. I am now covered under my husband's work policy, and no one's said a thing. I've also gotten a great rate on term life insurance. Celiac didn't seem to be a consideration there. Maybe I've just been lucky, I don't know.

~~~

After a lot of deliberation, we decided to have the biopsy done. For me, the overriding concern was not wanting to do a gluten challenge down the road if, for whatever reason, he'd need to get the biopsy. I know how awful it is for me on the rare occasion that gluten finds it's way in. And my brother went through a 6-week challenge and was completely miserable by the 4th week. For my husband, it was to get a baseline for the damage.

So, still with some doubts, we're on for Tuesday.

[Lisa]

Good luck and I hope you get the news that you have been looking for.

[Dukie]

My 4-year-old son was diagnosed almost 2 weeks ago with type 1 diabetes. We knew they were going to do blood tests, so we wanted to make sure that they tested for celiac disease because I have it, as does one of my two diabetic brothers. His ttg came back Friday at 153 (with anything greater than 10 as positive). We had him tested almost 3 years ago at his 2-year checkup and the test came back within normal range.

He started life in the upper percentiles and has gradually come down to the middle of the pack. Most of his classmates are at least half a head taller.

So my husband and I wonder, given the accuracy of the ttg (better than 90%), the family history and his shorter stature do we really need to put him through the biopsy as the doctor recommends?

We appreciate any thoughts and advice. Thanks.

Katie

[Dukie]

Katie,

In my opinion, although we did not have the biopsy done on my daughter, there are some advantages.

Advantages:

1. It is my understanding that in the U.S. you can write off the increased expense of gluten-free food on your taxes as if it were medicine (but only with a medical diagnosis).

2. A definite diagnosis is less likely to be challenged by either you or your child in later years. Following a gluten-free diet is hard and many people want to believe that they can still eat gluten and therefore NEED a definite diagnosis.

3. A definite diagnosis is needed in the school documentation to hold them accountable to diet adherence.

However, with that being said, I personally don't feel a biopsy is necessary. One question which may help you determine this is if your doctor will write the diagnosis without the biopsy. Our doctor did, so I have a letter for the school, etc. Many doctors will diagnose on the positive IgA for TTG anyways. Lastly, if you feel confident that you can keep true to the diet than why else do you need it? In our case, we had already begun the diet for approx. 3 weeks before we saw the Celiac Specialist at Children's Hospital in Boston. In order to have the biopsy, they told us that my daughter would have to eat gluten for 4 to 6 weeks first. There was NO WAY we could do that. Even my daughter began crying. She did not want to eat any more gluten. So, not only is it invasive, but the time you must continue to subject your child to gluten while waiting for the test to be scheduled could be problematic (even if you don't recognize outward signs). Hope this was helpful!

[GFmum]

This may not be an issue in the USA as no one has mentioned it as yet (although insurance was raised) but to have membership to a coeliac society here in Australia you must have a confirmed biopsy diagnosis. I would look into the insurance aspects also if I were you.

When my son had his biopsy, the enterologist came out stating that usually the bowel looks normal and the pathology results confirm diagnosis however on this occasional he observed obvious damage with the naked eye and recomended an immediate gluten-free diet. This was a few months after diagnosis of his diabetes (we wanted to wait a little longer so we could adapt to the new lifestyle but symptoms made us confront it earlier). Whilst psychologically it's difficult as a parent to watch your child go through this procedure I believe it's best for him to have it done. It's over quickly and you have a baseline status to compare with should problems continue or reimerge later.

It's a personal decision but I recomend he have the biopsy so diagnosis is confirmed and any other nasty disease is thus ruled out. It's piece of mind that you checked and know for sure.