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

New And Confused

Michl

Recommended Posts

Michl Newbie
Michl
Posted

My name is Michelle, we have a 3 yr old son who has suffered with constant diahrea for 5-6 months. Last week he started passing clear foamy fluid from his bowels. We tested for parasites, blood etc and everything came back ok. We were now told to do a gluten, wheat, egg, milk(he was already lactose intolerant but did take well to cheese and yogurt before) free diet. If they dont see a change at the end of the month he will have to have testing and x-rays done on his bowels. I almost now hope its an allergy so I know there isnt anything 'physically' wrong with him. He is a completely happy boy, no problems with weight at all. He has some minor behavior issues which we jsut chalked up to being a boy, but when reading I see this can be a symptom also.

He is doing really well on the diet, there has only been a couple things he doesnt like. I have yet to find a local store with a large selection of products for him, but its only been a week.

I have been reading posts and it seems like my Dr is having us do things backwards. Should he have had some test wheile still Gluten, or is my Dr smart in just taking his reaction as diagnoses? Would love some feedback, this is very new to us. We also have an 8yr old daughter with no allergies or intolerances to anything.

~Michelle

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted

Believe it or not, I agree with your dr, because that is the same approach my dr took with me lo, these many years ago. I prefer the noninvasive type medicine myself, and your little boy I'm sure wouldn't mind if he understood. What you might do is the enterolab to see what's going on and to do the gene test. It's something I hope to do in the future. The diet challenge is a valid dx tool, and because of your son's age, the tests have a notoriously high false negative rate. And celiac is genetic, but for some reason the disease seems to have been "turned on" in you son, while your daughter, so far, is in the clear, although she may have the exact same celiac genes. I have celiac, my brother doesn't. I'm sure it's from my mother's side, but none of my cousins seem to have it. It's another one of those things that medicine can't explain.

Hope your son has a good response to the diet. Keep us posted!

Annette

lovegrov Collaborator
lovegrov
Posted

Standard advice from celiac doctors would be to at least do the blood tests while your son is eating gluten. Blood tests are no more invasive than having blood drawn and will not be accurate after your son is gluten-free unless he starts eating gluten again. The tests are not perfect but from everything I've read they're considered effective in most people by age 2.

richard

Guest nini
Guest nini
Posted

actually I think dietary response is the most valid diagnostic tool. blood testing in children is completely unreliable. In adults it's not that reliable either, too many false negatives.

I belong to the alternative way of looking at this, which is, a gluten-free diet is healthy, there is no reason to NOT be on it, if it helps your son you have saved yourself a lot of money and aggravation with going round and round with Dr.s trying to get them to do the tests you want and then leaving you on your own to figure out the diet. You do not need a Dr.s permission to go on the diet, regardless if it's Celiac or Gluten Intolerance or an allergy, the treatment is the same, avoid gluten... for life.

Archived

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

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


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    klmgarland
    Newest Member
    klmgarland
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • 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.
×
×
  • 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.