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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.