Jump to content

  • 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
Celtic Queen
Posted

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
pricklypear1971
Posted

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
salexander421
Posted

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
Celtic Queen
Posted
  • Author

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
Ned Up North
Posted

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
Roda
Posted

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
Celtic Queen
Posted
  • Author

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
*charliesmum*
Posted

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
Takala
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,907
    • Most Online (within 30 mins)
      7,748
    Lori4050
    Newest Member
    Lori4050
    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

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.