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

Son Gets Tested Monday


Celtic Queen

Recommended Posts

Celtic Queen Explorer

I was just diagnosed as Celiac in August and I've seriously been thinking about getting my son tested since then. He doesn't have bad gi problems, but there are some things I notice that make me suspect gluten intolerance. He has really bad allergies, occasionally complains of stomach pains, is kind of uncoordinated, has problems paying attention, and bruises easily. And he complains about growing pains. I read the thread on here about growing pains.

I guess I've sort of been putting it off because I was afraid he will test positive. And I'm worried about dealing with his diet at school, on top of dealing with mine. I think I was putting my head in the sand to hope it will all go away.

Well today I got a call from the school nurse. They were doing health screenings at school and he tested borderline anemic (just like I am). So I decided to pull my head out of the sand, call his doctor and get him tested.

I don't really have a questions. I'm just putting this out there for some support from the other parents who are dealing with this with their children. My husband is a really great guy but he's still dealing with the fact that I have this disease. It's not that he's doesn't want my son to be tested, but I get the impression he thinks that the testing will all be for nothing and that I'm seeing symptoms where there aren't any.

He still doesn't take me 100% seriously, although he he's beginning to realize how committed I am to this the longer I do it. I think he thinks this is kind of a fad for me. And I can understand where he's coming from because I did try a lot of different diets trying to make myself feel better before I discovered the problem was gluten. But if my son is positive, he'll have to not only take this seriously, but I will likely make him go gluten-free too. And that's probably overwhelming for him too.

Anyone else having these kinds of issues? Sorry for the long and rambling post.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I'm taking my son in for testing this week... I wonder about behavior issues and a few stomach issues also.

My husband is fine with gluten-free so far - But it's not HIM, it's me. If our son's genetic screen comes back more positive than mine it will get interesting.

Evidently I have come down with a bug so I'm going to be brief...more later.

salexander421 Enthusiast

We have no official diagnosis but to be frank gluten makes me and my two girls sick. My husband has had a really hard time with it and not having an official diagnosis makes it even harder for him. It has taken about a year now but he is finally coming around. Our house was mostly gluten free but he was still eating regular bread in the house. Our youngest daughter was still having issues with diarrhea and tummy pains so I talked to him and suggested we try making the house completely gluten free to see what happens. Within a week her moods and sleep improved and she went from having diarrhea 3-6 times a day to having completely formed bowel movements 1-2 times a day. That was what it took to get him to see how sensitive she is and how important this gluten free lifestyle is. He is now eating gluten free bread I make for him in a bread machine and trying to be as supportive as he can.

I don't know what it will take to get your husband on board but just be patient, he'll get there. I try to reassure my husband that I'm not trying to tell him how he has to eat (he hates that) I'm just trying to keep our daughter's safe. He can eat whatever he wants when he's away from the house and us. Being sensitive to him too really helps.

You are doing the right thing by getting your son tested. If he does have celiac disease catching it while he's young is the best thing you can do for him. I know it's hard to think about both of you following this gluten free diet but honestly it's a lot easier when you don't have to cook separate things for everyone. If all of you are gluten free it makes life much easier!

I don't have any suggestions as far as dealing with schools but I'm sure others will chime in on this!

Celtic Queen Explorer

Thanks everyone for your responses. You made me feel much better. Pricklypear, I saw your post on the other thread about your bug. I hope you feel better soon.

I think I've been gradually trying to work my husband into the whole gluten free thing. But If my son tests positive, the house will go totally gluten free immediately, which will be a shock for him.

I do all the grocery shopping and cooking and while that used to bother me, now I'm grateful because I can control the food coming into the house. I've been keeping glutened bread and cereal in the house for them to use for breakfast and lunch. They eat what I cook for dinner, which is always gluten free. I guess the big change I worry about, other than getting my husband on-board is dealing with school, birthday parties, etc.

My other issue is what I'll do if he tests negative. I still think he would benefit from being gluten-free, but I'll need to get the hubby on board. Maybe I'll suggest to hubby that we try to feed him gluten-free for a month or two to see if his symptoms improve.

I guess I'm putting the cart before the horse here and should wait until we have the results from the testing. I'm just the type who is always worrying and planning.

Ned Up North Newbie

When my son was diagnosed the dr. said that syptoms can be a wide variety of things...not jsut gi issues. The weird thing is my son has always been a bed wetter, but since being on a gluten free diet, he has been dry every night since. The doctor, even though he has never seen bed wetting as a symptom, thinks that it certainly is in our case! So, basically, it can manifest itself in any way!!!

Roda Rising Star

I have a diagnosis for my youngest son(symptoms, postitive tTG, improvement gluten free, and return of symptoms upon gluten challenge), so there was no problem there. The only issue my husband had with it was that we didn't do the scope. I didn't see the need, but hubby regretted going along with my decision. After he was gluten free 4.5 months we decided to do a gluten challenge for scope. My husband saw the horrible changes/symptoms that resurfaced when he was reintroduced to the gluten. Hubby called it quits after three days, and said there was no way he, or my son could tolerate three months of it. That was all the more proof he needed. As for oldest son, I've thought he would have been positive. Nope, he has had 4 negative celiac pannels(not borderline but really negative on the low end of range) over the last three years. I toyed with the idea of putting him gluten free but with all the negative tests I couldn't bring myself to do it. Over this summer, he started complaing more of stomach/gas pain. He always has had issues with constipation, since an infant. He hadn't grown a shoe size in over a year and his growth was stalling. I took him for a GI consult and he had a scope done. It came back negative also. He and I decided to just bite the bullet and see how he did gluten free. I have seen changes and improvements. He no longer complains of stomach/gas pains, he has gained 5 pounds since August, his feet have grown and his is slowly growing in height. He now goes to the bathroom every day to every other day as opposed to every 3-4 days. Hubby wants to be sure he needs to do this, so for hubby's sake we will be reintroducing him to gluten in Dec. I already know he will probably remain gluten free, but hubby needs to see it for himself. However, I don't believe my oldest son is near as sensitive as myself and his brother. I even think he might tolerate gluten free oats and gluten free oat CC where youngest son and I don't.

Celtic Queen Explorer

Luckily we don't have the bed wetting issue, but it still truly amazes me how many totally different symptoms are related to the gluten. I find more and more each day.

Roda, sounds like we're in the same boat with trying to convince our husbands about the gluten stuff. Hopefully after your gluten challenge next month he'll be convinced.


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



Celiac.com Sponsor (A8-M):



*charliesmum* Apprentice

I am also worried about children's parties, school, eating out etc but think its probably best to just cross that bridge when we come to it. With my son only being 2 at least he wont know any different and cant 'miss' anything (hopefully).

Takala Enthusiast

Don't tell your hub he has to go gluten free. But you might suggest that meals at home be gluten free if you're the one cooking them. My husband volunteered to do this after seeing me wiped out once too often, and he got tired of the pantry being an accidental minefield. In return, I bake as much (gluten free) stuff as he wants ( I had to slow down on that, I am a little too good at it, even allowing for the high protein low carb ingredients, and we don't NEED muffins every day) and he can eat anything he wants when he's not eating here. He also tends to cook the meats, so it's actually more of a "guy" type diet, meat/veg/potatoes. It wasn't that hard, it just meant he eats a different brand of breakfast cereal otherwise, and then rice cakes, rice crackers, or corn tortillas for manufactured type snacks, and we switched to rice pastas.

A lot of parents just make up batches of frosted cupcakes to freeze and then have on hand for to take along to various celebrations, and I know some also will do this with their own personal serving size pizzas so they can blend in.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,200
    • Most Online (within 30 mins)
      7,748

    Elisa Stutsman
    Newest Member
    Elisa Stutsman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • 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...