5 Year Old -- Does She Need A Biopsy?

[mamaupupup]

Hi Stacy,

Lots of great feedback here--and I agree with all of it. Not to startle you, but please also alert your pediatrician and the Ped GI you choose about the frequent urination. Frequent urination and lots of thirst can be two symptoms of Diabetes. There can be a link between Type 1 Diabetes and Celiac. Please make sure they do all the testing necessary to rule out the diabetes. (Note that Celiac is more common than Diabetes, interestingly).

You probably already know this is a hereditary disease. You may also want to have all other family members gluten load and test at the same time while you still have gluten in the house. I unfortunately staggered the testing for me and my husband...and it was difficult to eat gluten once it wasn't in the house!!! I was literally going to the Jack in the Box drivethru so I could get gluten rather than bring anything into our purified house!

[stacytr]

Hi Stacy,

Lots of great feedback here--and I agree with all of it. Not to startle you, but please also alert your pediatrician and the Ped GI you choose about the frequent urination. Frequent urination and lots of thirst can be two symptoms of Diabetes. There can be a link between Type 1 Diabetes and Celiac. Please make sure they do all the testing necessary to rule out the diabetes. (Note that Celiac is more common than Diabetes, interestingly).

You probably already know this is a hereditary disease. You may also want to have all other family members gluten load and test at the same time while you still have gluten in the house. I unfortunately staggered the testing for me and my husband...and it was difficult to eat gluten once it wasn't in the house!!! I was literally going to the Jack in the Box drivethru so I could get gluten rather than bring anything into our purified house!

Thanks -- Em's not actually very thirsty or really peeing a lot -- she just FEELS like she has to pee a lot (so a lot of urgent feelings without a lot of output). But when they tested her for UTI they also looked at sugar and said it was fine. I will definitely let them know though. I didn't know there was a connection between diabetes and celiac.

We will be getting my son tested as well very soon and are planning on getting blood tests for us too -- though my husband and I both feel fine with gluten.

Do we need to remove all gluten from the house? Are there ways to still have gluten stuff for the rest of us and non-gluten stuff for her? I can tell I'm going to need to read a lot more about contamination and cleaning and just household management.

[1974girl]

I just watched youtube video today from Dr. Peterson (some famous celiac doctor apparently who tours the conventions). She said that if the genes are there and a high Ttg, then you don't have to scope. I say that, but I still scoped my oldest even with all of that. It was postive. So I can see both ways now.

I would give your daughter toast every day for breakfast. I have to keep my dd #2 on gluten until next month for her retest. I have been giving her toastand whatever she wants for lunch. Dinner is always gluten free. I am NOT making 2 dinners! : ) I am hoping that is enough! You will want to pump her full of it so you are not wasting your money and putting her to sleep for no reason. You want to be confident in the results. It may be hard to watch her symptoms but you will have to do it if you choose to scope. The small intestines have a surface area of a tennis court and they will be taking a few tiny snippets. I have no idea why that is the gold standard but it is. They only found my dd's in the duadenal bulb. I have heard that is not uncommon. Make sure you ask specifically for that spot to be biospied.

[mamaupupup]

off to rush to make dinner for/with in-laws...so this is quick...

Totally agree with 1974 girl! And, I followed her path too--we had positive bloodwork and genetics and opted to scope (for both girls and me...).

In terms of household...whatever you decide is doable. I suggest making that decision once you know how many people in your family are affected. We all four carry the genes, two have developed Celiac (kids) and two not yet known but susceptible (I get my results next week, DH is dragging his feet for his workup...). We decided to have a fully gluten-free house and cars. It's easier on grandparents, babysitters, etc. Just grab and eat, no worries!

I could write short stories or a novel on what I did to clear out our house, etc. When you're ready, to hear the saga, let me know!

[Gluten Free Girls]

As much as I hate it, I would recommend going through with the scope. My two daughters and I were all diagnosed last summer. My youngest daughter, 6 at the time, was the first to have positive blood test results so she was the first to get scoped. My husband and I worried, researched and debated as to whether or not it was really necessary. We went ahead and did the scope. Our GI then said that it wasn't necessary for myself or our 12 year old daughter to be scoped because all of our blood tests were similar and the genetic link was obvious. We are now one year in to Celiac and a gluten free life but it's like we are starting over again. My girls immune systems are the biggest indicators that something isn't working. Our youngest daughters numbers are dropping but still no where near where they should be. Our GI recently threw his hands in the air and told us that he doesn't know what else to do. In desperation I emailed Dr. Peter Greens office at Columbia University and we are hoping to visit his office soon. Some of the preliminary questions that I was asked really surprised me. One thing was very obvious....Dr. Green feels strongly about scoping and my oldest daughter and I should have proceeded with a scope. I really had high hopes that the celiac diagnosis meant that we were heading in the right direction and the gluten free diet would be the answer but Celiac is so complex. I wish we had taken that step last summer. Best of luck to you. I know how hard it is. We have to be Warrior Moms! I highly recommend Dr. Peter Green's book. This disease often dictates that we as Moms have to read, research, and then ask all the right questions to the doctors that we are supposed to trust. Some day I hope diagnosis will be a cake walk!

[stacytr]

I just wanted to update -- this is my post from my doctor thread.

Ok we had our appointment with Dr Liu at the Arcadia extension of Childrens Hospital Los Angeles. First impressions: I REALLY liked him. He was kind, good presence, gentle with Em. He really listened and really answered our questions. I had printed off the stuff about the new guidelines -- he read them through and gave a thoughtful response. He talked about why he still wanted to do an endoscopy. He said that he wouldn't be surprised to see those standards become common practice in a few years -- but it's not there yet -- not all the celiac organizations have embraced and said yes this should be/will be our new standard of diagnosis. He also said that since one of the lab tests must be read by a tech, that it too can show false positives/negatives. He wasn't at all dismissive of them (like the first doctor I talked with on the phone). Endoscopy is one of his fields of expertise -- which was reassuring -- he's done a LOT. He said he would do at least 6 biopsies and do the duodenal bulb. He also referenced Dr Pietzak, and it was clear that he respected her. He also said she was a resource if a case wasn't clear. All of it really made me feel MUCH better. I fel like we are in good hands. I liked him, but more importantly I trusted him.

We will get the scope. I really thought about what different people here said -- and I was very persuaded by the idea that if we ever thought we might want an official diagnosis (scope) that NOW is the time to do it. It won't happen till mid July -- after our big trip to Canada. That does make things easier for us re traveling and being in a small town in Alberta Canada -- but we were prepared to travel gluten free with her. Thankfully she has not been miserable -- stools are much looser again and regular bouts of hives -- but she's still herself -- so I feel much better. I was kind of emotional after the doctor visit -- it's just a lot of energy expended thinking/worrying about it all. But I am so glad that I got a new referral to a different doctor.

Thank you again for all your hand holding. I've learned so much already. I will update again after her scope. And I'll of course be researching about scoping before the appointment. I'm assuming I would just do a search for scope or endoscopy on this sub-forum? I just want to make sure I'm prepared for it -- I think Em will be fine -- we said they use a little tube to go in her tummy and take little pictures of everything. We are trying to not make too big a deal out of it for her.

[mamaupupup]

A couple of things on the endoscopy:

- The CHLA team made us all feel very comfortable, they know kids and their parents' needs well!

- Both our girls came out of anesthesia upset and angry--I was unprepared for that! It wasn't really a big deal and it wore off fast, but I was caught off guard.

- I made a "gluten free gift basket" for each girl and they got to unwrap them and enjoy all the goodies. That made the day seem a lot better for them! After their biopsies I kept them 100% gluten-free.

Have a great trip!

[VydorScope]

- Both our girls came out of anesthesia upset and angry--I was unprepared for that! It wasn't really a big deal and it wore off fast, but I was caught off guard.

Our son did too. The doc's warned us ahead of time that it was normal and that it would pass, which it did.