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Update...from Oh No Newbie

AnObstinateOne

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AnObstinateOne Newbie
AnObstinateOne
Posted

So, I am a terribly slacker and never properly thanked my previous repliers....thank you.

Well, the baby had her endoscopy last Tuesday. Doc said he took two biopsies and some fluid samples (for pancreatic enzyme testing?).

I couldn't get another appt for a results show until a MONTH LATER ::thwaps head::: but was told I could call for results in about a week or two.

So when I do call for results, what will they tell me? Is this something a doctor needs to interpret at an appt, or can I get some kind of answer over the phone by whatever the result is? This hurry-up-and-wait approach is maddening. Can the results be trusted in an 18 month old? Doc said he didn't see anything visibly wrong on the scope, but do they ever? Is it something that is visible? Is it easier to put a baby on a gluten-free diet?

On a side note, another kid o' mine has a food allergy, and this week had a severe allergic reaction to some other food she ate (we can't pinpoint what it was just yet. More testing on the way!) If the babe does have celiac disease, I wonder if there will be any food allowed in this house, between the two of them. :rolleyes:

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gfpaperdoll Rookie
gfpaperdoll
Posted

If your baby is finished with testing then you can start to feed her gluten free, even if the biobsy is negative you should do a dietary trial. & oh my only two samples, that does not sound like enough...

re your other child & a food allergy, I have found that when you become gluten free then your other food allergies either go away or are lessened. Not saying to not take an allergy seriously... This child probably also has a gluten problem. when you take one gluten free, I would just do both of them at the same time, well unless you want to get that child tested for celiac first.

I forgot, but did your baby have positive blood work? Is that the reason you had the scope?

wishing you the best in your journey to gluten-free

AnObstinateOne Newbie
AnObstinateOne
Posted
  • Author
If your baby is finished with testing then you can start to feed her gluten free, even if the biobsy is negative you should do a dietary trial. & oh my only two samples, that does not sound like enough...

re your other child & a food allergy, I have found that when you become gluten free then your other food allergies either go away or are lessened. Not saying to not take an allergy seriously... This child probably also has a gluten problem. when you take one gluten free, I would just do both of them at the same time, well unless you want to get that child tested for celiac first.

I forgot, but did your baby have positive blood work? Is that the reason you had the scope?

wishing you the best in your journey to gluten-free

Allergy Child has a peanut allergy, but we've never suspected celiac of any kind, b/c the child is a giant....always in the high percentages for height and weight, etc. No stomach aches or gastro issues. Now that you mention this, if any of the kids goes gluten free, I'll test her on that. Can't hurt, right?

The baby is being tested for a few reasons: although her blood test came back negative, doc said in young kids, it's not all that reliable (she's 18 months). She was tested because she had fallen off her growth curve, she's got steatorrhea (ack!) and we have a family member (my sister) with celiac (blood test and positive response to diet).

Now, yet another kid of mine did get a positive result on the ttg, (borderline...4.9) but his (different) GI doc said that although he had steatorrhea and this pos result, plus some other off numbers on blood work, he did not suspect Celiac :huh: .

Wow, I managed to turn this into a novel. I know, the more I write, the more it seems obvious that I should just do gluten-free for all of them (yes, there's more kids. But just one more.) However, since I'm the only one in their lives who seems to be picking up on any symptoms, I almost feel as though I need some validation that it's not just me....regardless if some of the medical tests are supporting my suspicions. I kind of feel as though I should see this all the way through before I do anything else.

Thanks for getting this far, and if anyone did, you all deserve a (gluten-free?) cookie. :)

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

lol...hi obstinant one!

Good luck on the test results. Waiting is maddening! The drs office should be able to give you test results over the phone to tell you if it is celiacs, inconclusive, or not at all a celiac. Did you have any gene testing done? That can help if the test results are inconclusive. I have five food allergies spread between three people in my house (peanuts, tree nuts, dairy, gluten, & shellfish) Grocery shopping is fun. :rolleyes: I found labeling everything with a black permanent marker as you unpack groceries is a huge help for those who can't read or wont read :P

My oldest has the nut allergy. Because of the nut allergy, I have a rule that no nuts of any kind are allowed in the house. EVER! The extended family has taken years to stop showing up with snicker bars...that is another story. This system has worked for us. She has never had another reaction. At least our house is safe :D

A good percentage of gluten-free food is made on shared equipment with nuts, these are allowed only if a safe alternative is not available. I try hard to keep the shared equipment foods to a minimum. My nut allergic child is trustable and good with the labels, so this system works for us.

My youngest dropped off the growth charts, tested inconclusive on the biopsy, has the gene for Celiacs. Her two yr old b day present was a biopsy! Poor thing! The drs still say she is just petite! ARGH!!! She went dairy free after the biopsy and that helped some, but she went completely gluten-free/CF in August. First time ever the stools looked normal, the rashes come back with accidents, etc. That is all the proof I need. But family needed to see something concrete (change in poop, growing again, no more rashes, etc.) in order to believe that she does have a problem with gluten.

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