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

Testing My Son?

applegirl03

Recommended Posts

applegirl03 Rookie
applegirl03
Posted

I'm wondering if there are any other parents out there with this problem. I have Celiac, and in the last month or so I have noticed my son is complaining of stomach pain and diarrhea, bad gas, and general discomfort. I notice it gets worse after eating things like bread, pancakes, pizza...things with wheat in them. I mentioned this to his Pediatrician and he says that he is too little to have it and he doesn't want to test him. He also has some behavioral problems, not that I'm trying to pass blame or responsibility, but I would hate to be punishing him for something he isn't able to control....should I take him to another doctor? I just want the blood test for the anti-bodies, not asking for a scope or anything. Did anyone else's children have this problem....I dont want to be a worried Mom running her kid to the doctor every time the have the sniffles, but I really think something is going on here....any advice or suggestions are appreciated!

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

Celiac.com Sponsor (A8-M):


Cara in Boston Enthusiast
Cara in Boston
Posted

I am fairly new to this but it is my understanding that ALL first degree relatives of someone diagnosed with celiac disease need to be screened for it (even with no symptoms at all). You need a new doctor.

Ours was the opposite. My son tested positive with very few symptoms (a week of complaining of stomach aches and a noticible change in behavior) and the rest of us then got tested. I was found to be positive too. Looking back, I have/had way more symptoms than my son, I just didn't know they were related.

Get a new doctor, then get him tested. Good luck.

Cara

tarnalberry Community Regular
tarnalberry
Posted

I would fire your doctor - he's an idiot.

If you want a "real" diagnosis, yes, find another doctor.

You can try the diet and see if it helps if you don't care about a "real" diagnosis.

Dixiebell Contributor
Dixiebell
Posted

I have had issues with Dr.s not wanting to test for things I ask for. I just firmly say that I want them done. It looks as if your son needs to be tested. I would try calling the Dr. and telling them that you want the test to be run, if he refused again then I would make an apt. with another Dr.

You Dr. must not be up on celiac info. because even some 18 mo olds have been diagnosed with blood and biopsy. If you have private ins., you are paying for it and should be able to get whatever tests you want.

My son's testing was negative but has had only positive results eating gluten-free and very limited dairy. My son did have behavioral issues and had to sit by the teacher everyday in second grade. He always had bad marks on his behavior sheet. This year he has had two marks for talking and that is it. :) I have noticed it too especially at gatherings where there are other boys his age. The other boys seem to not be able to be quite, sit still and control their impulses. It was quite embarrasing a few weeks ago when all the boys in his group went to a planetarium and very few could sit still and be quiet and the leaders had to keep loudly telling them to stop. :(

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

I'm wondering if there are any other parents out there with this problem. I have Celiac, and in the last month or so I have noticed my son is complaining of stomach pain and diarrhea, bad gas, and general discomfort. I notice it gets worse after eating things like bread, pancakes, pizza...things with wheat in them. I mentioned this to his Pediatrician and he says that he is too little to have it and he doesn't want to test him. He also has some behavioral problems, not that I'm trying to pass blame or responsibility, but I would hate to be punishing him for something he isn't able to control....should I take him to another doctor? I just want the blood test for the anti-bodies, not asking for a scope or anything. Did anyone else's children have this problem....I dont want to be a worried Mom running her kid to the doctor every time the have the sniffles, but I really think something is going on here....any advice or suggestions are appreciated!

You have to have him tested. If it comes back negative then fine, it will rule it out and you can look for another reason for it. My son is six years old and I insisted he be tested, my doctor said the rash was just echema and highly unlikely to be celiac due to the fact that he didn't show signs of gastral issues. If my brother didnt have it I would probably went with her advice and treated it as echema.

I had to pay for the test but it came back positive with very high levels. He then had a scope to comfirm yes he has it and damage was already being done. At five your son is not too young to have it.

We are waiting results to come back from Sick Kids Hospital in Toronto where we didn't have to pay for the test. We took five kids down who could potentially have it with minimal signs of it and celiac could be doing damage internally that we are unaware of. This is a genetic disorder and needs to be taken more seriously by more doctors.

Good luck and I hope you resolve your poor sons issuses sooner than later. If you have any other children I strongly suggest they at least have the blood work done at some point as well. I will let you know how it went with my other children and my nieces and nephews.

zimmer Rookie
zimmer
Posted

I'm wondering if there are any other parents out there with this problem. I have Celiac, and in the last month or so I have noticed my son is complaining of stomach pain and diarrhea, bad gas, and general discomfort. I notice it gets worse after eating things like bread, pancakes, pizza...things with wheat in them. I mentioned this to his Pediatrician and he says that he is too little to have it and he doesn't want to test him. He also has some behavioral problems, not that I'm trying to pass blame or responsibility, but I would hate to be punishing him for something he isn't able to control....should I take him to another doctor? I just want the blood test for the anti-bodies, not asking for a scope or anything. Did anyone else's children have this problem....I dont want to be a worried Mom running her kid to the doctor every time the have the sniffles, but I really think something is going on here....any advice or suggestions are appreciated!

I recently tested positive, so all 4 of my girls have been tested (1 was positive). The pediatrician did not hesitate to test, and actually admitted she needed to maybe learn a little more since she was aware of new research & other developments. I told her some of what I've learned, and she listened. She talked to me about each one, and made notes of their "symptoms" even though I had them tested based not on their symptoms but on my test results.

The 3 she tested were negative, but one of them (age 17) is going gluten free which has helped already to resolve long-standing issues with stomachaches. The other 2 (ages 6 & 4) have complained of stomach aches and headaches after eating pizza, and other small things that make me suspect they are intolerant despite the negative blood work.

I agree with those who say find another doctor. You need to have trust in your pediatrician, and to have a relationship that you can talk to him or her. After such an incident, I would no longer have that trust. I think a good doctor listens to parents because no one knows your child better. He doesn't seem to have that.

Good luck with it, and stand by your baby! :) I let mine hurt for years at school with vague "stomach aches" and was never able to figure it out. :(

Roda Rising Star
Roda
Posted

I had the same problem with our ped after my diagnosis. He REFUSED to test my boys. I was furious. Luckily they were seeing an allergist/immunologist at the time and he ordered testing over the phone with no questions asked! My oldest has been tested a total of three times and all three negative (he is the one who seemed to have symptoms)but his current allergist feels that even though his latest test is negative he is gluten intolerent. He is still on a regular diet right now so that we can go through the proper additional testing. My youngest son was tested twice. This last time his ttg was mildly positive. I put him gluten free without going to the next steps. In one aspect I regret not doing the rest of the testing (GI consult and scope) but the other side feels like it probably would have been a false negative. I'll never know unless I do a good 3 month challenge and redo things. I do have the backing of our allergist though so it has not been a problem at school. Recently they made his whole classroom gluten free for snack. I think it was too much to deal with with 19 other kids eating gluten and 1 who wasn't and the clean up involved. They did not want to take away from instructional time. So far it is going good.

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

Celiac.com Sponsor (A8-M):


applegirl03 Rookie
applegirl03
Posted
  • Author

Thanks everyone! I really think something is going on with him and I do want to get him tested. Sometimes as a parent you dont want to be too overbearing or be a worry wart that something is wrong when it may not be, but even today when I picked him up from school his teacher told me he had severe diarrhea after lunch (which was macaroni and cheese). I'm going to try to take him to a new doctor and hopefully we can figure this all out soon and he can back to his normal self!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks everyone! I really think something is going on with him and I do want to get him tested. Sometimes as a parent you dont want to be too overbearing or be a worry wart that something is wrong when it may not be, but even today when I picked him up from school his teacher told me he had severe diarrhea after lunch (which was macaroni and cheese). I'm going to try to take him to a new doctor and hopefully we can figure this all out soon and he can back to his normal self!

Just be aware that false negatives can be even more common in children than in adults and in adults the false negative rate is about 20%. After all testing is done do give him a strict trial of the diet no matter what the results are but don't take him off gluten until you are done with testing. And do get another ped.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    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 (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.