Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Should we try gluten free?


Ned

Recommended Posts

Ned Newbie

Hi everyone. 

I have just joined as I'm concerned about my 10 year old son. He isn't diagnosed as coeliac - he had 2 blood tests once as a toddler and once aged about 5, both negative (though I don't have actual results). Ever since he was weaned get has had urgency and his stools are generally of "porridge like" consistency. I don't ever recall him doing a "sausage" poo. His nappies we're pretty mucous too, as I recall. It took him til well over 8 to get full control of his bowels and he often gets episodes of diarrhea. Doctors thought it might be overflow constipation but the treatment didn't really help (and he's never had a hard stool!) 

My sister, my cousin, and two of another cousin's children (same side of the family) are coeliac diagnosed, and my dad is undiagnosed but gluten free. Another sister and my dad are hypothyroid.

My son recently got diagnosed with an autoimmune condition called Itp (immune thrombocytopenic purpura) where the spleen attacks platelets and it causes easy bruising, fatigue etc. This is quite rare in his age group (more common in toddlers and adults) and it is more common in coeliac people (though most people with itp are not coeliac). However, as he has been tested and it was negative the doctor dismissed this link.

My son is tall and well built but tires easily and is pale with dark circles under his eyes. He is average weight for his height. I assume he isn't significantly anaemic as they never mentioned this when he was hospitalised with ITP a couple of months ago.

If it were you, would you give gluten free a go? And if so, how long would he need to avoid gluten before we might see a change in his bowel habits?

 

Thanks so much everyone

Ned x


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
1 hour ago, Ned said:

Hi everyone. 

I have just joined as I'm concerned about my 10 year old son. He isn't diagnosed as coeliac - he had 2 blood tests once as a toddler and once aged about 5, both negative (though I don't have actual results). Ever since he was weaned get has had urgency and his stools are generally of "porridge like" consistency. I don't ever recall him doing a "sausage" poo. His nappies we're pretty mucous too, as I recall. It took him til well over 8 to get full control of his bowels and he often gets episodes of diarrhea. Doctors thought it might be overflow constipation but the treatment didn't really help (and he's never had a hard stool!) 

My sister, my cousin, and two of another cousin's children (same side of the family) are coeliac diagnosed, and my dad is undiagnosed but gluten free. Another sister and my dad are hypothyroid.

My son recently got diagnosed with an autoimmune condition called Itp (immune thrombocytopenic purpura) where the spleen attacks platelets and it causes easy bruising, fatigue etc. This is quite rare in his age group (more common in toddlers and adults) and it is more common in coeliac people (though most people with itp are not coeliac). However, as he has been tested and it was negative the doctor dismissed this link.

My son is tall and well built but tires easily and is pale with dark circles under his eyes. He is average weight for his height. I assume he isn't significantly anaemic as they never mentioned this when he was hospitalised with ITP a couple of months ago.

If it were you, would you give gluten free a go? And if so, how long would he need to avoid gluten before we might see a change in his bowel habits?

 

Thanks so much everyone

Ned x

While you can trial the diet, I would suggest getting copies of his previous celiac testing.  For a while, the screening TTG was most commonly used, but they realized that it does not catch all celiacs (like me and small children).  I found this out when some of my family members were tested and they were negative.  They told me that only the TTG was ordered (one test that catches most and saves money!).  Some 10% of celiac are seronegative (get another opinion from another doctor!)

Celiac experts recommend screening family members every two to three years or sooner if symptoms warrant.  My kid, who does not have celiac, has tested negative.  She will continue to get tested for the rest of her life.  Of course, she could get a genetic test and that could help her to avoid future antibodies testing.  But, we live in the US and are ruled by insurance.   Even though 35% of the population carries he genes that COULD develop into celiac disease, insurance might refuse to insure her (I have personally rejected for health insurance because I had Hashimoto’s Thyroiditis).  

A firm diagnosis can help him later in life or at school, but as a parent, improving my child’s health could trump everything.   

Oh, it can take months or a year for symptoms to improve on the gluten free diet as the learning curve for the diet is steep and there often is collateral damage (e.g. other AI issues, osteoporosis, etc.).  Hard to say as everyone is different.  

ravenwoodglass Mentor

Before you give the diet a good strict try you should get another full celiac panel done. Just because it was negative 5 years ago doesn't mean it will be now.  That said after all celiac related testing is done a strict trial may be a good idea.

Jmg Mentor
2 hours ago, Ned said:

If it were you, would you give gluten free a go?

I'm one of those people that tested negative but still have a significant reaction to gluten. So follow the good advice above, but if and when testing is finished do go ahead and trial the gluten-free diet even if the celiac diagnosis is negative. You could find gluten is a problem for your son.

 

2 hours ago, Ned said:

And if so, how long would he need to avoid gluten before we might see a change in his bowel habits?

Your Transatlantic cousins have a Open Original Shared Link for this kind of question...    In truth its impossible to say. I know I noticed a massive difference within 3 days of changing my diet, but there were changes still going on months after I began. You would be well advised to keep a food journal when making any changes to his diet, but don't cut gluten before you're sure there's no more testing taking place. 

Best of luck to you both :)

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. - Ann13 replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    2. - trents replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    3. - Ann13 replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    4. - trents replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    5. - trents replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,817
    • Most Online (within 30 mins)
      7,748

    Charisse25
    Newest Member
    Charisse25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ann13
      Not everyone will be allergic to whatever they're using in food. There is another forum re people who are posting they have vocal cord & throat issues after they eat breads & pastas which stopped after they removed those foods from their diets. Same as me...gluten doesn't react as gastrointestinal it reacts orally. Which is why I'm saying ensure all your food isn't what you're having a reaction to.  ...& I used Cornflakes as an example because some gluten free people would assume it's gluten free but if they're allergic to barley they will have a reaction...nothing to do with their inhaler.  You're missing my points a lot & frustrating so I'm done commenting. You really need to ensure your food isn't what's causing the issue. I am checking with symbicort manufacturer to check their ingredients.  Good bye... I'm done with this. 
    • trents
      I certainly agree with all that. However, you also mentioned cornflakes with barley malt but that would obviously not be gluten free since barley is a gluten-containing grain. And the chemicals they spray on grains would affect everyone, not just those with gluten disorders. I'm just trying to figure out what this thread has to do with the main subject this online community is focused on. Is the point of this thread that having a gluten disorder makes someone more susceptible to reacting adversely to inhalers? That could be but it may have nothing to do with the inhaler having gluten. It could have to do with, say, having higher systemic yeast counts because the celiac community generally suffers from gut dysbiosis. So it would be easier for celiacs using inhalers to develop thrush.
    • Ann13
      Re food,  I said the gluten free thing isn't necessarily about gluten itself, but chemical sprays they use on GRAINS which cause allergic throat & vocal cord issues regardless of the inhaler you're using.  Your issue may not be the inhaler but eating gluten free food that still will bother you because they have been sprayed with certain chemicals. Barley & oats cause vocal and throat issues with me as well as gluten free flours. We didn't have gluten issues in the world yrs ago...the food changed somehow or they're using sprays that cause reactions in some people.  Re inhaler: Symbicort is registered as gluten free but companies can change their ingredients at any time so you may want to check with the company who makes it and get an ingredient list.  I don't believe I'm reacting to the inhaler...I believe it's a gluten free pasta I've been eating so I'm taking it out of my diet. I've used the inhaler for over 1 year and no problems up until now so I suspect it's the pasta. 
    • trents
      There could be other reasons you are reacting to the inhalers. There is no concrete evidence to believe they contain gluten. Anecdotal experiences can be misleading do not establish fact.
    • trents
      Are you saying you believe there is gluten in the inhaler products? I mean you talk a lot about reacting to foods that are supposed to be gluten free but this thread is about inhalers. 
×
×
  • Create New...