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

Glutening My Son Before Test But He Is So Miserable.

Calmom

Recommended Posts

Calmom Apprentice
Calmom
Posted

My son is getting tested on Wednesday, so his dad and I have been feeding him a high gluten diet. Actually, I am having all three of my kids tested, but he is the only one who displays symptoms. He is not handling it well at all. I picked him up from his dads today only to learn he spent the morning vomiting up bile. Now my son mentioned he thought there was blood mixed in it, but his dad didn't see that. For most of the day he was in agony with heartburn, cramping from diarrhea and he has deep dark circles under his eyes. Since the time I picked him up I fed him a gluten free diet because I couldn't stand to see him suffer.

I am just wondering if he can continue to go gluten free until one or two days before the test. I know it has to be in his system for the test but I can't stand to see him suffer like this. So how long should he be on gluten before the test?

Also should I ask for the full panel for my two non symptomatic children or can we get away with just the gene test?

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

Celiac.com Sponsor (A8-M):


Mummyto3 Contributor
Mummyto3
Posted

Is he normally taking in gluten in his diet? If so, I wouldn't have thought you needed to completely gluten him up. My daughter was on her normal diet which incl. gluten when she went for her test and her levels were very high. I wouldn't suggest making him gluten free before any tests but I also don't feel it necessary to gluten him up. Just let him eat his usual diet (if that incl gluten etc.)

I feel for you guys. We're new to this too x

SweetDsMom Newbie
SweetDsMom
Posted

Did your doctor say to do "high" gluten? I ask only because a coworkers doctor told her that even just one sandwhich a day would be enough to get good results.

Also, what test are you doing? The biopsy? And who is pushing for this? I ask only because DH and I don't want to have the biopsy done and thank God DS's doctor agrees. We KNOW he has celiac and I just can't imagine making him sick for days in order to "prove" it.

Maybe when DS is older and he can better understand what's going on, etc, and has a say if he wants it or not. but until then... we don't care about the biopsy.

Good luck. Call your doctor, though, and tell him how your DS is reacting, etc.

Mizzo Enthusiast
Mizzo
Posted

We also were told a whole grain sandwich a day was ample. Our DD was eating about twice that a day when the blood work came back positive. So we were able to reduce it somewhat before the biopsy per GI . I begged for something and she said this was fine.

Calmom Apprentice
Calmom
Posted
  • Author

The Dr.s never told me what to have him eat. I called and requested the test after I was diagnosed.It seems they have looked at everything except celiacs for him. No one ever told me how much eat myself so I just guessed and loaded up. He splits his time between his dads house and my own, but has been eating gluten free at my house. I never had the biopsy done my self, just the blood test and so that was all I was asking for him. The blood test seemed good enough for my Dr.

Mummyto3 Contributor
Mummyto3
Posted

I think the blood test should be enough. But they seem to want a biopsy 'just to be sure'.

dilettantesteph Collaborator
dilettantesteph
Posted

He can always be diagnosed with gluten sensitivity by response to diet. Why does he need the celiac label? Is it worth it?

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Call your dr ASAP and tell him about your son's reaction. He may diagnose based on dieatary response or he may agree to get him in earlier for testing. The only reason to do a gluten challenge is if he has been gluten-free for a good amount of time. If he has just been eating a regualr diet up until now there is no need to gluten him up. But if he was gluten-free for several months prior to this glutening he would need to have that gluten in him for 2-3 months prior to testing. Ether way I do think you should just get him tested right away and go gluten free regardless of the results. Don't even wait for the resutls. If you know keeping him gluten-free makes him better you have your answer. The only obstacles you will have withotu a formal diagnosis will be getting his dad to agree and feed him gluten-free and also gettign the school system to cooperate.

Calmom Apprentice
Calmom
Posted
  • Author

As soon as his test is over Wednesday he is definitely going gluten free. While I have no doubts in my mind that he has celiacs, I am afraid its going to take a positive test to convince his dad and step mom to be as careful as the need to be. This already is a huge worry for me.

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. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    2. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    3. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    4. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    5. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      3

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748
    ColbyBowlin
    Newest Member
    ColbyBowlin
    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

    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
×
×
  • 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.