zenmama

Andrea Biopsy Update

Andrea had her procedure today. Everything went well and there were no complications. Dr. Al-Tawil found Lymphonodular Hyperplasia in the descending colon, cecum, ascending colon, transverse colon, sigmoid colon and rectum. We will not have the biopsy results for 2 weeks. We have an appointment to discuss the results on 2-12.

We are now continuing the STRICT Gluten Free diet. Dr. Al-Tawil warned us that not doing so could lead to more significant health problems such as Lymphoma and Cancer.

We are home now and Andrea is eating well and resting.

We have an appointment with the nutritionist on Tuesday.

I would love any thoughts on this as my mind is spinning and we are sleep deprived from the bowel prep, long drive and early morning!

we are working on this as well. dd (15 mo) has Celiac and ds (3) only has seasonal allergys. While I dont mind gating gluten-free (I am also a vegetarian), Dh isnt a fan of it so we are woring out the kinks as we speak!

Do you think it's just gluten or do you feel there are other issues? I would take her off the peptamen and add those foods back in till your biopsy. Have them also biopsy for eosinophils in her esophagus and stomach and intestines etc. Might as well get it all done at the same time if she's having that many problems. We had this done w/ Evan, but he was already on Neocate then and I was off offending foods and even if he was having problems, it would've all been healed by then. Duh, someone should've told me that befor hand! I was no happy. All of my kids have been put under (Evan has been 3 times!) and it's always gone well, good luck.

We are going Gluten Light till the biopsy. She is still drinking some Peptamen too because she just needs the nutrition but I slip her some gluten daily just not mass amounts to make her miserable. I want this biopsy done and over with!

15 month old

Hi! My 15-month-old grandson, Logan, was just told by his Gastroenterologist that he is allergic to milk protein, soy and Gluten. He has had diarhea his entire life, looks like he's going to die of starvation any minute, has me worried to death, is very underweight at 19.5 pounds, and has lots of trouble sleeping due to tummy troubles. He desperately needs protein. Since he is my grandson, I don't have the ability to talk with his doctors. Only his mom does that, so I have no clue what info the doc has given his mom. She's only 21 and I don't know how much of what he says she truly absorbs. Anyway, it's been about a week now of a gluten free diet, we think, and he's still having terrible bouts of diarhea, large amounts, and usually has undigested foods in it. I'm scared for him.

Please help us!

If he has been on the gluten-free diet for a week it could take a few weeks for that to straighten out. I realize you are scared I am to as a mom with a child with this disease. Would the mom let you go to the appointments? I know my MIL is welcome to come with me anytime because I feel that the more people in my family that are educated about Celiac and my child the better it will be for her as we adapt to this new lifestyle.

Well tried introducing rice cereal to the four month ld last nght.. he got terible gas, cried and was up till 1 am... I was not happy.. I guess he is not ready for it is carnation good start gluten-free?

forgot to give the two year old his bread yesterday..he ate threee gluten-free muffins!

oh well 21 days to go till his test so pleenty of time to feed him stuff that might do him damage to see if it is doing him damage!

I cant comment on Formula because I breastfeed. However my 15 mo was put on Peptamen Jr to supplement her diet and it has done wonders for her weight. Introducing Rice Cereal at 4 mo isnt a have to, he may just not be ready yet

After 5 weeks of diarrha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.

after 5 weeks of diarehha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.

Children's Pediatric Gastroenterology, PC

Knoxville, Tn affiliated with East Tennessee Childrens Hospital

Our ARNP Teresa Renner in London , KY referred us and is very understanding and easy to work with about Celiac.

Ditto. There's someone that posts that they like it so maybe I'm doing something wrong. It always comes out gummy and sticks in my teeth. Tinkyada never gives me a problem.

i had that problem and i figured out the solution, after you boil it and drain it IMMEDIATELY rinse with cold water and that makes it all better!

we decided to go ahead with the biopsy. It is scheduled for jan 31st.

Thanks for the advice on getting it done now not later. They did tell me they thought there would still be enough damage to tell and to keep her off gluten so we shall see.

i guess my question is : What benefits from the biopsy other than conformation. If removing gluten makes her better isnt that the most important factor?

the only way to know for sure would be to get tested.

My dd had a positive ttg (over 75) and she is 15 mo. At our last appointment we decided to schedule the biopsy in April b/c I am very uncomfortable with it at this time.....

ANYWAYS

I thought that I was told to go Gluten free, but maybe i misunderstood. dd ate something woith gluten in it on accident the other day and has been ill for 4 days.

but if we go off gluten, the biopsy wont be accurate correct? Do i need to call her doctor and tell her about the rash/belly aches and bump the biopsy to sooner than later?

i am so confused!

Hi! Welcome! If you're going back in April for the biopsy, she can't be off gluten--the test results won't be accurate, epecially after that much time. Do you know why they want to wait that long? When our daughter was diagnosed (age 4) it was a whirlwind of appts, I didn't know which end was which, but she had the positive blood test results and then a rush referral to the GI from our pediatrition, the biopsy was within a week. Positive results and we were gluten-free that day. But I knew no different at that time, I guess we were really fortunate to have the dr we had. I know there are a lot of people here though that had a positive blood test, eliminated the gluten and had a great result--either decided against the biospy or was given misinformation by their dr and it has worked really well for them. If there's any help/info we can give, don't hesitate!

hmmm...i think i should call and ask then. I think i misunderstood them. I am not comfortable with them putting my daughter under. They wanted to do it on the 21st of dec and i declined. I guess it just scares the crap out of me b/c there is a history of allergies in our family to that stuff. I do know when she eats gluten she gets diarehha and BAD rashes and blisters. So I feel like taking it out is defiantely what is best for her....maybe a followup is in order...

Hi dandelionmom

Hi! My 15 mo daughter was recently diagnosed. She has constant diarehha and we saw a pediatric GI who did a RAST as well as blood and stool tests. We have removed Gluten, dairy, soy, eggs, wheat fish and nuts from her diet and she is drinking a nutritional supplement called Peptamen JR. She is also breastfed but my BM doesnt seem to irritate her only the direct consumption of the foods.

We are going back in April for a biopsy of her small intestine. I was told from her blood test that normal for her is under 25 and she was way over 75...but I dont know exactly what that means.

So I will be lurking for a while and posting questions as they arise. This sounds like a great place to start!