Fibrosis in the stomach lining.

[twinmomIM13]

Can anyone give me any insight on whether fibrosis found in stomach lining is DEFINITELY CF or not?

My daughter's GI did a scope and biopsy last Friday and received the results today. She said they found "fibrosis in the stomach lining" and she would have to do further research to find out what that meant. I, of course, could not stop myself from googling and over and over found my queries leading to CF. They also found reactive changes of the esophagus. She is 19 months old with IgG-deficiency, they were doing the scope to look for evidence of celiac's. She has been chronically constipated since we switched from breast milk to formula at 6 months. Similac Total Comfort (a partially broken down enzyme formula) helped us get her to a year old on formula. Since switching to cow's milk, and then milk alternatives, she has had constipation frequently going 2 weeks without a bowel movement.

 

[Aboveallislove]

Dear Mom,
I' so sorry. I have never heard of fibrosis of the stomach in discussions of CF, but I don't know if that's because CF is diagnosed earlier and treated and the condition doesn't occur then or further testing isn't done, or if it isn't related to CF. I'm sorry I can't answer your question. A few thoughts, though: You might want to call your newborn screening office and ask them to fax you the screen results and specifically the irt level and what the "normal" range is and if it is higher than the normal range, the specific CF mutations they tested for. There are about 2000 mutations but the states usually only test for common ones about 30 or so. I'm posting the link in the followup which has contact info for NJ (have to swtich to Ipad and I've typed and lost this note 2 times on the ipad). If it is a high irt level I'd make sure the GI knows that and ask for a referral to an accredited CF center for a sweat test and a full genetic screen to see if she has any mutations.
I am so sorry. You must be so worried and "cystic fibrosis" is a scary thing to hear. The thing to know, though, is that there are new meds that have changed what CF means and what you read on line is likely outdated. Please write back if this doesn't make sense or if there's anything more I can share that will help.
Hugs and prayers,
Love

heres the link.
https://tools.cff.org/Display/dsp_A...?idWT=NBS_NJ&idCT=3915&lstAIs=1&cdS=75&idAI=0

 

[Aboveallislove]

Hey Mom,
I've tried some googling and can't find fibrosis of the stomach lining anywhere. I'm wondering if you are hitting "cystic fibrosis" because there are lots of stomach issues related to cystic fibrosis and with the key word of fibrosis and stomach it will lead you there. Did you find one specifically that discussed fibrosis of the stomach lining as a symptom of CF? (GI issues are a big issue with CF, but absent something saying fibrosis of the stomach lining, it might mean something totally different and it is just the computer pulling the key words together). I'd still recommend discussing that possibility to get the doctor's thoughts, though.

 

[Ratatosk]

Could it have to do with possible reflux -- maybe they're referring to Esophageal Fibrosis and just put it in easy to understand terms....

 

[twinmomIM13]

Thanks for the quick replies. I do have copies of her newborn screening, I will pull them out and look. We were a military family when they were born so we have all of their medical records. I was wondering if the keyword issue is why CF keeps popping up. And since sharing what the doctor told me with family I have gotten such concerning looks about the word "fibrosis" being used at all. In reference to the reactive changes in the esophagus, she was put on reflux medication but the biopsy information pertaining to the fibrosis was a completely different topic with the doctor.

I called this afternoon and had the biopsy results forwarded to her pediatrician as well, so she can have a look and maybe give some insight.

Above, could you point me to where I could find the contact information for the State of Maryland, as that is where her NB Screening took place. TIA.

 

[Aboveallislove]

Here's Marylands: https://tools.cff.org/Display/dsp_A...?idWT=NBS_MD&idCT=3915&lstAIs=1&cdS=64&idAI=0

It looks like if she had a high IRT you'd know because they'd have you retested at a doctor's office.

I think fibrosis generically just means scaring...so while constipation and GI issues can be a sign of CF, I don't think the word "fibrosis" of the stomach by itself means it connects to cystic fibrosis (i.e. fibrosis of the liver from drinking).

Take care. Hugs and Prayers.
Love
PS Thank your family for its service and sacrifice.