New To Celiac Ds

[monahere]

Hello,

my 7 month old son K has celiac ds, even though his GI doesn't want to say it right now, she says K is at "risk" for celiac, but to me it is obvious.

Here is our story...K started out great, first 4 weeks were wonderful, then fifth week fussing with breast feeding, had some signs of silent reflux and dysphagia and kept getting worse with refusing to feed, by third month had developed complete feeding aversion.Breast fed exclusively for almost 6 months, where I could feed him only in his sleep as he refused to feed while awake.Between 4-6 months he gained some wt but not height.At 6 and half months had endoscopy, showed gastritis and mild duodenitis with patchy and "mild" villous blunting.we were admitted to hospital at 7 months age for NG tube placement and feeding because he won't take bottles and we wanted to try and hold the breast feeding and see how he does, we had tried for bottle for months and months with no success...anyways, so third day of being NG tube fed the hypoallergenic formula [elecare] he started demanding bottles like someone flipped a switch...he was hungry and wanted to drink his bottles...huge relief for us, we were sooo happy . during the hospitalization also found out that his IgA levels are undetectable and his serological tests including the IgG based one were negative....I was so sure that his symptoms were all from milk protein allergy and thought celiac was a long shot as no one in family has it....boy was I wrong, 1 week after our discharge from hospital found out his HLA typing shows presence of DQ2 and DQ8.

So combination of IgA deficiency, abnormal biopsy and positive HLA typing is a clear celiac ds to me but his GI doesn't want to diagnose him yet, just wants us to be gluten free and go from there.

What do you all think?this is celiac ds, right?

Also since then he has gone downhill some and is fussing again with bottles, I got rid of the prevacid solutabs since it has some milk protein or lactose or something in it and also got rid of gelmix that we were thickening the formula with [gelmix has maltodextrin] no change so far and he has a painful rash around his butt and groins which indicates that he is not tolerating something....I thought elecare is the answer for now...but is he not tolerating that?

Any babies with celiac here?I am just having a hard time with this, feel like I am drowning the more I read about this...

sorry so long, if you read so far, thank you so much and looking forward to some input from the experienced parents here.

Mona

[MitziG]

Celiac is likely, but casein (milk protein) allergy will also cause villous atrophy. From my experience, the two often go hand in hand anyway.

Can you try nursing yet, or has your milk dried up? I would be curious to see how he did nursing if YOU were gluten and casein free.

[monahere]

Hi Mitzi

Thank you for your reply. I was on TED while breast feeding or so I thought, we are Asian Indians and I was consuming spices and flours ( sorghum, millet) from Indian store which there is a high chance they are gluten contaminated. I am pumping to keep my supply and want to breast feed after being completely gluten free which will be 4-6 more weeks since I did consume all allergens on September 26 th.

[MitziG]

What is TED? Hopefully your allergy-free diet will allow you to nurse him! I wish I had more suggestions for you.

[monahere]

TED is total elimination diet, at one point I was only on rice, squash, zucchini, olive oil, black pepper but it lasted only 4 days as I was losing my milk supply.....gosh this is hard and just wanted to get some perspective how moms of babies this young cope with this stuff.....