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New Here And Overwhelmed

precious831

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precious831 Contributor
precious831
Posted

Hi. I'm new here. I'm so glad I found this forum. My DD is 27 months old and was diagnosed FTT months ago. Long story short she went gluten-free and in less month she gained over 2 lbs. She had other symptoms such as dark stools that are very large and very oily. We took her to see a specialist at Cincinatti Children's and the doc didn't do anything because he said she didn't look like she has anymore malabsorption and because she gained weight. Really, I wanted her tested for malabsorption. Fast forward to now, she's lost weight and complaining she's tired and sleepy. Her stools are still the same and she would go from constipated to diarrhea. It's so bizzare and she would have occasional mucus in the stools. We asked the GI to order genetic testing (Enterolab) but he said he didn't believe in it. So I don't mind,I'll order it myself, even if I have to pay for it.

I'm also having symptoms for some time now and also gluten-free. That's a whole another story.

My concern is I feel like my dd is getting gluten somewhere. I'm so worried it makes me sick. I'm going crazy researching and analyzing. I just found out the toddler toothpaste she used had gluten. I felt terrible about that. There were other little niggly things too. Anyway, currently she's on compounded Zantac flavored w. tutti frutti. I kept telling the pharmacist to make sure it's gluten-free. Anyway, does anyone know if the compounded zantac is gluten-free? Aren't the generics made by different companies? I'm so confused and I want to talk to that pharmacist again but they're closed.

Sorry this is short. Btw my DD has allergies to corn, dairy, tomato, egg. She's doing better and able to tolerate some in baked goods.

This was long, sorry! Thanks.

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MichelleW Rookie
MichelleW
Posted

HI I am sorry to hear what you are going thu I too have a 18 month old who has just been diagnosed and it is very overwhelming?? Does your DD go to daycare? Could there be contamination there? Also what toothpaste are you using? I did not realize it is in there too...

precious831 Contributor
precious831
Posted
  • Author
HI I am sorry to hear what you are going thu I too have a 18 month old who has just been diagnosed and it is very overwhelming?? Does your DD go to daycare? Could there be contamination there? Also what toothpaste are you using? I did not realize it is in there too...

Hi and thanks for your reply. I'm a SAHM so I stay w/ her. We have no gluten in the house that I know of, except some granola bars(oat) in the basement. My husband doesn't eat it in front of us. He's very supportive of this. The toothpaste is Earth's best toddler toothpaste. I was alternating between that and Orajel toddler toothpaste. I read that the sorbitol in there is possibly fr wheat. I guess it's either wheat or corn-derived. The Earth's best one has oats.

Is your LO FTT? Having trouble gaining weight?

Thanks again.

MichelleW Rookie
MichelleW
Posted
Hi and thanks for your reply. I'm a SAHM so I stay w/ her. We have no gluten in the house that I know of, except some granola bars(oat) in the basement. My husband doesn't eat it in front of us. He's very supportive of this. The toothpaste is Earth's best toddler toothpaste. I was alternating between that and Orajel toddler toothpaste. I read that the sorbitol in there is possibly fr wheat. I guess it's either wheat or corn-derived. The Earth's best one has oats.

Is your LO FTT? Having trouble gaining weight?

Thanks again.

Yes he is failure to thrive at his 15 month apt he was still only barely 20lbs. He was diagnosed then and the dr thought he might also have reflux so while we were waiting for all the testing and what not he was put on prilosec and he was much better and ate more. The gastro dr said it was b/c the prilosec was masking celiac pain and we went ahead and did he colonoscopy and endoscopy where he was diagnosed about 2 weeks ago. The dr said he was fine on his normal food diet until our next apt at the end of the month. We have been slowly introducing gluten free foods and taking away his regular snacks so as to not go cold turkey. I use the orajel toothpaste and I read somewhere on here it is gluten-free. How about lotions? I just realized Aiden's ecsema lotioan has oat in it. Hopefully it will clear up once the gluten is out of his diet. Right now Aiden is the only one gluten-free so it is going to be hard on all of us. What shocked me the most is that I did not see any symptoms of Celiac in Aiden. I am still trying to cope and it is hard. I am just hoping that my daycare who is super supportive is not to overwhelmed I dont even know where to start there, and how much is fair to ask of her....

precious831 Contributor
precious831
Posted
  • Author
Yes he is failure to thrive at his 15 month apt he was still only barely 20lbs. He was diagnosed then and the dr thought he might also have reflux so while we were waiting for all the testing and what not he was put on prilosec and he was much better and ate more. The gastro dr said it was b/c the prilosec was masking celiac pain and we went ahead and did he colonoscopy and endoscopy where he was diagnosed about 2 weeks ago. The dr said he was fine on his normal food diet until our next apt at the end of the month. We have been slowly introducing gluten free foods and taking away his regular snacks so as to not go cold turkey. I use the orajel toothpaste and I read somewhere on here it is gluten-free. How about lotions? I just realized Aiden's ecsema lotioan has oat in it. Hopefully it will clear up once the gluten is out of his diet. Right now Aiden is the only one gluten-free so it is going to be hard on all of us. What shocked me the most is that I did not see any symptoms of Celiac in Aiden. I am still trying to cope and it is hard. I am just hoping that my daycare who is super supportive is not to overwhelmed I dont even know where to start there, and how much is fair to ask of her....

Hi Michelle. My daughter was on Prevacid since age 4 months and I was able to wean her off 2 months ago into Zantac. She's weaning off Zantac now. Her GI doc wants her off it. She's doing really well thank God.

So did your son show positive on the stomach biopsy? Did he have a stomach biopsy? I heard most children will test negative for that as well. Is he gaining weight now? It's so weird because before we intro wheat, she was in the 90th percentile. She weight almost 20lbs at 5 months of age!!! Then for an entire year almost no weight gain. Bloated stomach, diarrhea/constipation, among other GI symptoms.

My DD is gluten-free since June of this year and I guess she wasn't as gluten-free as I thought she was. Tomorrow we're taking her to a new ped and will ask for more testing to see if she's having any malabsorption and maybe we'll get some answers to the weight issue. I'm so stressed too, been stressed about this for a whole year.

Goodluck w. your son and keep me posted. Our GI won't diagnose my kid as celiac bec she was neg on the blood test and she's not had a stomach biopsy which he insists and I don't. I am not willing to put my child back on gluten, considering how bad she was before. So we're opting for the genetic testing instead.

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