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

5-Yr-Old ... Need Help


LittleTee

Recommended Posts

LittleTee Rookie

Hi there,

I am self-diagnosed with a gluten sensitivity, possibly celiac but not sure. My family is trying to move to a gluten-free diet, as my 5 year old son seems to respond well to it, but they do eat gluten products regularly.

At my son's last check-up I asked my doctor about my son's stools (sorry if TMI), which are yellow-beige coloured, loose and bulky, and that his stomach distends after some meals (usually with gluten, IMO). She said that since he's not complaining of stomach pain or failing to grow (he's about 45 lbs, tall), it's probably just his system adjusting, and not to worry about it, he can eat either way.

Well, now he is complaining about stomach pain. Last week the school called and he was crying due to stomach pain -- this was about 2 hours after having a bagel at breakfast. I notice as well that his behaviour is terrible after eating something with gluten.

I want to take him back to the doctor, but I am worried I'm going to get the same answer I got before, and I've read on this forum about some of the unresponsive doctors you all have encountered. I'm also worried they will want him to go back on gluten per "normal" -- and I cannot stand to see him crying due to stomach pain on a regular basis! (we live in Canada outside an urban centre, so the wait for testing I am sure will be long.)

Part of me wants the diagnosis, but I don't want to see him in pain. And part of me also is afraid of this. It's one thing to deal with myself. But a childhood (life) of constant dietary vigilance seems like a hardship, to be honest.

Would love some advice on what to do, how to cope, etc. Thanks for your time.


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



Celiac.com Sponsor (A8-M):



sb2178 Enthusiast

"his system adjusting"?! Really, fat malabsorption is abnormal.

A PCP should be able to order the blood tests, so it's probably feasible to feed some extra gluten for a few weeks then get the blood tests. If they're positive, you could consider it a diagnosis. If they're negative, you would have to decide whether to wait for a GI appointment or just do a strict diet trial (and maybe a challenge). Technically, a full challenge should have at least 6 weeks to 3 months of full gluten, but if he's still eating some, you could probably get away with less...?

I'm somewhat in favor of testing, just because the medical system tends to have greater respect and better follow-ups for those who at least do some structured testing, and because it could be something else. It's always a great idea to rule out other potential problems.

Poppi Enthusiast

My 6 year old is very healthy but eats 100% gluten free because we have a family history of celiac/gluten intolerance and he can't control his temper when he's had gluten.

It's pretty drastic. About 24 hours after he has gluten he simply can't control himself. He gets really angry about everything, screams at people and holds onto grudges over the tiniest perceived insults. That lasts for a couple of days and then he starts to calm down again. Last year in kindergarten I was called on 3 separate occasions and asked to remove him from the school grounds. SO far this year has been really calm.

divamomma Enthusiast

I am also in Canada. Your family dr can order the blood test, it is on a regular requistion. I would absolutely push for the blood test. A diagnosis will make it easier for your child to stick to the diet and will help others (including school staff) take you seriously. I know it is so tough waiting. Be strong!

LittleTee Rookie

I never thought of the school staff -- good point, thanks! I think I will get my doctor to do the test. If I push, she may give in. Hopefully.

Why are doctors so hesitant to suspect celiac, anyway?

divamomma Enthusiast

Mine wasn't hesitant at all! I brought my daughter in with my concerns about ongoing issues(behavior, tirednedness, constipation, lethargy, dark circles, constant hunger etc) None of her symptoms were "typical" celiac symptoms. My dr suggested running some blood work, I agreed not knowing exactly what was checked off on the requisition. Two days later she called with the results. Both the dr and myself were truly shocked. So it all depends on your dr. Many are now realizing just how varied the symptoms are. Many are now utilizing the simple blood test. However many still are not. Good luck.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    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
      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
      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
      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
      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
      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.