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

Becoming A Reality


mommy2joseph&david

Recommended Posts

mommy2joseph&david Newbie

I think up until this morning I really was just able to talk about this and think nothing of it...but since we are giong to Joseph's consult here in about an hour and then have his pre-op appt set up for 1 it is all real. My mom called me this morning and I just started crying :( .

I do not want my son to be ill in anyway, but I want all the problems he is having to end as well. I know the worst ogf the biopsy is the having him put under (we went through this when he had tubes put in), but I am just scared to know the truth. Glad to know diet change will fix the aliments, versus meds, but I just cannot imagine.

I also have a 3 month old baby and I am worried sick that hecould have celiac as well. Though looking at the way he is growing now, no way. We will probably never know as once Joseph's celiac is confirmed, we are all going gluten free. How do you all do it...how do you make that change and make everyone understand this is not fluke thing. It is real and it hurts out kids when they have gluten.

Tina


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



Celiac.com Sponsor (A8-M):



jjrobin Newbie

Hi, I have really no advice. My son has not been Dx with Celiac's, we are in the beginign stages, but I am 110% positive that is what he has.

My Mom just does not get it. A friend does, b/c she too has the disease. And personally I think I do to, in some form. LOL!! But, my Miom thinks I am being way over protective. Wish she could have been there with me last nite while my baby was puking his guts up b/c he had gluten yesterday. :(

One day, hopefully the word will get out that this i sjust as bad as any other allergy, you might not be able to see it, but the suffer's sure feel it.

Jenn

FreyaUSA Contributor

Me and my three kids were all confronted with celiac disease over this last summer (I've been gluten-free since March, kids since June...July? :blink: ) It has been hard, but when you see little things you had no idea that were related to their reactions to gluten disappearing, you'll be more and more convinced how necessary and important this is.

How to do it? As quickly and as thoroughly as possible. I know, not real helpful, huh? Fortunately, with peanut allergies on the rise, people are more aware of allergies in general and, if you're faced with people who just don't get it, I've gone the "allergic to wheat" route. My 15 yr old son puts it like this, "It's not an allergy. I won't drop dead if I eat it. What will happen is that I'll get so sick that for the next week I'll wish I were dead and for the next couple weeks after that I'll feel like crap." We also use the poison analogy. Eating gluten for us is like eating arsenic. A little today may not kill us, but over time, it will. (Since my father died two years ago from horrible complications associated with undiagnosed celiac disease, this holds a lot of meaning for me and my kids.)

Also, you say your baby isn't showing any signs of celiac disease. As you probably know, 3 months is a little young to actually show signs at all, but, here again, my three kids all have celiac disease. They were all in the 95th percentile in height and in the 25-50th percentile in weight (tall skinny family so it looked right.) Anyway, slow growth is only one possible symptom of celiac disease. My three kids all have different symptoms (one with no obvious symptoms, too.)

Good luck and I think you're planning the right thing, all going gluten free. My DH, who has NOT been tested, is doing it with us (I attribute it toward a strong survival instinct on his part, lol!) He's also incredibly supportive and has never bemoaned not eating something gluten filled (at least in the presence of the rest of us.) It will make it so much easier on you and your son to have the family support.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    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

    • 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…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
×
×
  • Create New...