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
      104,689
    • Total Posts
      921,759
  • Topics

  • Posts

    • Yes like a protein powder. I visit a local store there is so many brands and on every brand have write gluten free.that's way I confused which one is best any suggestions ! 
    • Do you mean something like a protein powder you could mix up?  A lot of them in the US seem to be gluten free.  Maybe just go to your local store and read all the labels?
    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • GLUTEN-FREE CERTIFICATION · FOOD SERVICES ... Celiac disease is an inherited condition, meaning that genetics do play a role. The chances ... View the full article
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,692
    • Most Online
      3,093

    Newest Member
    EllianaEthan
    Joined