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Newly Diagnosed 15 Mo

zenmama

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zenmama Newbie
zenmama
Posted

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. :blink:

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

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celiac-mommy Collaborator
celiac-mommy
Posted
We are going back in April for a biopsy of her small intestine.

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!

dandelionmom Enthusiast
dandelionmom
Posted

Hi Zenmama! :)

zenmama Newbie
zenmama
Posted
  • Author
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 B) dandelionmom

celiac-mommy Collaborator
celiac-mommy
Posted
I am not comfortable with them putting my daughter under.

I understand how you feel. 2 of the places I work in the hospital is in surgery and the endoscopy lab. I see adults daily having this same procedure, so I thought I was prepared for watching my DD go thru it. I have to say, NOTHING could have prepared me for what I saw. They warned me once they started the meds "in about 10 seconds she's not going to look like your daughter" In 10 seconds, her head rolled backwards and the look in her eyes looked like she was possessed. She saw my husband upside down and she started laughing uncontrollably. I must have had a horrified look on my face because when her head rolled towards me, she started crying uncontrollably. This is the point where they showed us to the waiting room. It only took about 15-20 minutes, I cried the ENTIRE time. She woke up screaming, you could hear her all the way down the hall. She remembers NOTHING. The only thing she remembered was playing in the kids room, how nice the staff was and how much "fun" she had. I'm definately NOT telling you this to scare you, but to let you know it will be a lot harder on you than on her. Although our GI had to send the samples to the lab, he showed us the pictures he took and told us "This IS classic celiac disease" We went gluten-free that morning and have been doing GREAT since. For us it was an immediate change. No more complaining of horrible stomach aches, no more swollen belly. She gained 3# in her first month (hadn't gained a pound in an entire year). She had always been a big baby (9#14oz--ouch!), always in the 95th percent for height and weight and then all of a sudden she stopped growing. She was 39#, 39in for a year. We just thought she was finally slowing up on the growing. I didn't think anything of it until the stomachaches started. 2 weeks later they hadn't gotten any better, they seemed to be getting worse so that's when I took her to the dr. I blamed myself for a long time because she was 'fine' until I had her brother. I still believe that was her trigger, but I know things happen for a reason. I think we were very blessed to be diagnosed right away, to have a dr who didn't dismiss us. Unfortunatly most are not diagnosed that quick. It is something that she will grow up with, it is already 2nd nature to her. She is SO healthy now. She's 6 and the height of an 8yo. I can't afford to keep her in clothes! :D

Worriedtodeath Enthusiast
Worriedtodeath
Posted

HI!

We just had our 19 month undergo the biopsy. She must be on gluten. In fact, gluten at every meal and snack. And we still had (the biospy isn't back yet) only one spot that looked possibly maybe if dr tried hard and squinted one way and held his tongue just right looked like Celiac. For us, we didn't see anything of the biopsy. THey took us back to get her temp, put on id bands, and change her into a gown and talk with all the drs. THen when they said it's time, they picked her up, wrapped her in a blanket, said tell mommy and daddy bye-bye and give smoochies. Then they left with her. We didn't see her again until they had removed everything but the iv and she was screaming bloody murder. Perhaps 20 mns tops from the time they took her till we saw her. If that long.

If you do not care to have the biopsy performed and you are allready being told to remove gluten from her diet, then you could always just go gluten free and then in later years due a gluten challenge if you need the dx. We waited on our biopsy to hit the 3 month mark of heavy heavy gluten intake since it is so patchy and hit and miss with this disease. We have neg bloodwork even during her worst worst month of diaherra so the biospy was our only hope of finding out if this is what she has. But we didn't have drs reccommending no gluten(only her ped) due to her neg bloodwork.

We've been gluten free since then and it's been remarable. WE acutally had an almost real stool yesterday and it's only been a few days. And her skin isn't like sandpaper today.

Stacie

zenmama Newbie
zenmama
Posted
  • Author

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?

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celiac-mommy Collaborator
celiac-mommy
Posted
If removing gluten makes her better isnt that the most important factor?

I think so. Like I said, I knew nothing different. Everything happened so fast, I didn't know there were any other options. I just wanted her to get better and I felt we were getting fantastic care, so I went along with it and only researched Celiac Disease. Everything I read said the biospy was the only confirmation, that was how it was truly diagnosed. I didn't find this site until last year, I didn't know how much everything/everyone varies. It was right for us at that particular time. You have to do what's right for you and your daughter. Listen to what your 'mommy instinct' is telling you. :)

ShayBraMom Apprentice
ShayBraMom
Posted

Well, but if hse's removed from Gluten now, any Damage she might havein her small intestine could be gone by April, why the biopsy so late? If she's off of Gluten already you guys have to do the biopsy now! I remember we did the bloodtest with my daughter, by the time the results got back and I got to talk to the Gastro it had been 2.5 weeks since I removed her from Gluten. He said I had to put her back for two month on Gluten before he could do the biopsy. Talk to your Gastro and aks him if it even makes sense to wait this long. you don't want to get a false negative or have to put her back on gluten for two month, while it's not guaranteed that she will have already damagin frfom the gluten visible in the gut after only two month being back on! hoope all works out! good luck!

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. :blink:

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

zenmama Newbie
zenmama
Posted
  • Author

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.

thepeach80 Rookie
thepeach80
Posted
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. :blink:

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

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.

grammy Newbie
grammy
Posted
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. :blink:

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

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!

zenmama Newbie
zenmama
Posted
  • Author
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.

zenmama Newbie
zenmama
Posted
  • Author
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!

Crishelle Newbie
Crishelle
Posted

It is scary...Ask if you can go with her just to educate yourself on what to feed him and what-not when you have him and to be of support to his MOM. It could take longer for him to feel better just because he had so much going on with his system...Also, when we first started, I couldn't count how many things I thought would be safe because I did not know better and was just plain wrong...The diet takes some getting used to. Reading labels to screen for gluten is in and of itself a very intricate artform!

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