Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help-retruning Poster...loosing It!


kimber

Recommended Posts

kimber Enthusiast

Hi everyone

I could use any advice/support as I feel like my world is crumbling...

My ds will be 3 in October...he was diagnosed with reflux at 2 weeks and has been on reflux meds since then (now PPI-prevacid)

He's also on 3 different allergy meds and mirilax (tried him OFF mirilax a few weeks ago and he didn't go for 4 days)

2 skin tests and a recent RAST were all negative

Recently I kept a diary and Zach reacted to corn, popped corn, and grapes

He can be the sweetest child one day, then a TERROR the next

His episode consists of major major tantrums, constant crying, gas...pale skin, DARK circles....agrressive/angry behavior

He had b/w ordered by his GI and stool test and all were negative

I feel like I'm loosing it...I just want a normal life and to figure out what's wrong...

I can deal with whatever special diet he needs...but I don't know what that is?

I tried him on a gluten-free diet and he did really well...more energy etc, then he started having episodes again...

He is already dairy/soy free, and I'm starting to wonder what he can eat?

It has been a while since he has been gluten-free free (only gets a small amount of regular pasta on occasion..no cookies/snacks)

yesterday I made Whole wheat pasta and today he is VERY VERY lethargic, sad, pale, etc...it breaks my heart!

I really don't know what to do anymore??

We see a new GI in 1 mnth and I don't want to put him through unecessary testing and won't result in any answers

Kim


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mommida Enthusiast

BUMP

If you want to start a gluten free diet and need information, PM nini for her newbie pack of information.

Any gluten gestation is not acceptable.

Check some of the posts from those who have problems with grapes.

We have people here who also are corn free.

L.

AndreaB Contributor

Definately get him totally gluten free with no cheating and be very careful about cross contamination. Check his meds to see if they have any gluten ingredients in them, as well as if they have any soy or dairy ingredients. Also check personal care products. If you can get all the gluten, soy and dairy removed then you can better tell what you are dealing with. It sounds like gluten is causing problems from what you wrote. Also, if he is allergic to soy you may want to watch out for peanut butter. Those two are from the same family. You could always switch to almond butter which will give you a little calcium too. Corn causes some people problems and from things I've read are best left alone or in small quantities if you can handle it. How does he do with rice or millet?

Please keep us updated on how he is doing and feel free to come here as often as you need to to talk.

evie Rookie

Kim

kimber Enthusiast

Thanks everyone for your support

Zach's gluten.dairy/soy free cereals are corn based

It's so hard to think about getting him gluten, corn, dairy and soy free

I'm sifting through recipes and different options

Thanks again, Kim

Kim

It sounds like you have your hands full Kim. Feel free to come on here and vent, ask for help or whatever helps you!! :) We are all here for help. Many here ha e been thru amny years of finding help but from my reading it seems children get diagnosed faster than mnay adults have. I understand the average for adults is 11 years, mine was more like 25 so I am glad I finally found the right Dr's a few months ago or I would have been down the drain I was losing weight so fast!! :angry: there has been alot of resaerch lately, I read recently that now autistic children are often found to be celiac and going on gluten free diet helps them a lot.

It seemed for myself it took nearly 3 months to start feeling even a bit better, could it be that your son was not on the gluten free diet long enough to be helped much or he ate some gluten food you were not aware of?

Sometimes grammas and etc feel sorry for a child & think they are deprived. B) hope I have been a bit of help. Prayers for you to help with the problems.. evie :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,199
    • Most Online (within 30 mins)
      7,748

    Stacy M
    Newest Member
    Stacy M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...