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New To Celiac Ds
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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

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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.

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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.

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

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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.....

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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