Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New To Celiac Ds
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.....

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,110
    • Total Posts
      919,433
  • Topics

  • Posts

    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,147
    • Most Online
      1,763

    Newest Member
    Otto'sMom
    Joined