7 year old, 5 years gluten-free, still having issues

[Liz21]

my son is 7 and has been on a strict gluten free diet since he was 2.  He still has issues with gas and bloating.  He complains he has a fat tummy.  He also now has really dry skin - it's only during the winter and is on his hands, inside of elbows and back of his knees.  CC is not likely but possible.  He is lactose intolerant but we do let him have gluten-free pizza, and he drinks soy milk.

Has anyone had similar symptoms?  Suggestions???

[StephanieL]

Have you had his thyroid checked?

[Posterboy]

You may not be gluten free as you think.  See my profile.  Try some Niacinamide.  A healthy child burps!  A sign of complete digestion.  It (niacinamide) can be used topically (rubbed into creams) for the skin dryness. Most dermatologist know about this.

INgest orally 1 large 300 count bottle  should cause burping to occur and digestion to improve.  Once burping begins his stool will sink to the bottom indicating healthy digestion.

Look up Open Original Shared Link

He may refractory celiac disease.  almost half of people on gluten-free diet's have gluten peptides in their urine according to this study.

Posterboy,

[cyclinglady]

Just to rule out cross contamination or hidden gluten, I would ask the doctor for a celiac antibodies test.  When was he last tested?   Be sure to include both the TTG and the DGP tests.   

Besides being related to celiac disease, the really dry skin could be thyroid related or it could be eczema.  There are many triggers, including food.    Perhaps, he has an new intolerance to milk or soy protein.    In the meantime, Dove soap is great and so is Cerave Cream (recommended by the National Eczema Foundation and it's gluten free).  

Open Original Shared Link

[cyclinglady]

54 minutes ago, Posterboy said:

You may not be gluten free as you think.  See my profile.  Try some Niacin amide.  A healthy child burps!  A sign of complete digestion.  It (niacinamide) can be used topically (rubbed into creams) for the skin dryness. Most dermatologist know about this.

INgest orally 1 large 300 count bottle  should cause burping to occur and digestion to improve.  Once burping begins his stool will sink to the bottom indicating healthy digestion.

Look up Open Original Shared Link

He may refractory celiac disease.  almost half of people on gluten-free diet's have gluten peptides in their urine according to this study.

Posterboy,

Refractory celiac disease is VERY rare.  Typically, most patients thought to have refractory celiac disease are just getting gluten into their diet either intentionally or through cross contamination.  A whole foods diet is recommended for a few months and later a normal gluten-free diet.   Let's not scare Mom into thinking the worst!  Besides the urine test that you linked is not even available yet.    It could be years before this test is on the market.    Best bet probably is to have an antibodies test and rule out gluten/celiac disease response.  

The OP Mom should not give a child a supplement, in my opinion, without consulting a doctor as there are some serious side effects from Niacin.

 

[Celiac Nutritionist]

Is your son on any current supplementation?   (vitamins / probiotics/nutriceuticals/ pharmaceuticals?)  - And do you know of any other already diagnosed health issues? 

Dry skin  (especially with Celiac Disease) can often be indicative of still not absorbing enough Essential Fatty Acids (or not getting enough in the diet to absorb), and or Thyroid imbalances.   

When  I was growing up, that is exactly how I described my tummy (before diagnoses).  Try starting a food diary, and record what your son eats, when he notices the bloating and the flatulence and see if you notice any "triggers".  (Ie: if he is Lactose intolerant, is he eating gluten free pizza with cheese - does he notice these symptoms within hours or within 24 hours of consumption? )      

 

[Posterboy]

cyclinglady and Celiac Nutritionist

You are right I was mainly referring to the fact that many more gluten-free people are not truly as gluten free as the sometimes think they are.

Jefferson Adams wrote about  this new research on celiac.com https://www.celiac.com/articles/24200/1/How-Are-Gluten-Immunogenic-Peptides-Like-Santa-Claus/Page1.html

I also reacted to the search results when I found this article  7 years old, 5 years gluten free still having problems on bing search but only listed as two years on google for the same search results (maybe not long enough to be refractory) but I went and looked back at liz21 description and she said 5 years gluten free long enough to begin considering if it possibly is refractory in nature.

Timeline is important I agree with "Celiac Nutritionist" how often is this glutening occuring?  Once a month or once a week etc.  There seems to be some unknown gluten source but liz21 said she had her son on a strict gluten free diet so I thought after 5 years it might worth mentioning more celiac's have background gluten than they often are aware of often.

I agree with the "Celiac Nutritionist" check your supplements. It is not uncommon to be taking medicine's with gluten in them and often we don't stop to consider that these things would be contaminated with gluten.

Scott Adams has a great summary on this topic.  The info is a little old but probably is still true according to him almost 1 in 5 (18%) can be refractory.  This assumes a 2 year burn in period or as he terms it "Non-Responsive Celiac Disease".

https://www.celiac.com/articles/741/1/Causes-of-Non-responsive-Celiac-Disease---More-than-50-Continue-to-Ingest-Gluten-Unknowingly/Page1.html

I will offer this timeline for you liz21 (and anyone who has been accidently glutened) it was always 18 to 20 hours after the waiter took the croutons of my salad thank's O'Ch*****'s that I had that glutened feeling of a four star day of staying near a bathroom.

Liz21, for what it's worth my gluten allergy got much more sensitive after two years of being gluten free. Less and less bothered me more and more and that sounds like what is happening to your son too!

^{Galatians 5:9} A little leaven (gluten) leaveneth (ruins) the whole lump (meal).

Do what the cycylinglady suggests and have your doctor recheck your son's antibodies with a simple blood test's and you can go from there + plus recheck for any gluten sources outside the home.  Or inside the home if you home is not a 100% gluten free home consider trying it for your son's sake even toaster's can cross contaminate as an example.

If you think it could be thyroid related simply check his normal body temperature more than 0.5 + or - difference could indicate an undiagnosed thyroid problem.

***** this is not medical advice please always consult your doctor before making any changes.

Good luck on your journey,

Posterboy,

 

 

[Posterboy]

cycylinglady,

I did not say Niacin. Most people do not know there is actually two types of Vitamin B3.  Niacin and the Amide version (non flushing) Niacinamide.  B vitamins often help with stress.  Folic Acid usually helps people with high blood pressure and Vitamin B3 helps regulate histamine (think what cause's us to itch) release's in the body and why people flush with the Niacin form but do not with the amide Niacinamide form.

You can also purchase Slo-Niacin bound to Inositol limiting any flushing.  I mentioned the Niacinamide form because it known to help skin issues when applied in a cream.

My local vitamin store has it on standby by order of the dermatologist because when the capsules are mixed in lotions it work 15% percent better than many prescriptions for roseas, acne, and psoriasas etc.

*** this is not medical advice.

Posterboy,

[StephanieL]

32 minutes ago, Posterboy said:

for what it's worth my gluten allergy got much more sensitive after two years of being gluten free

 

 

So do you have Celiac or do you have a gluten allergy?

 

Kids often present differently and the criteria for dx is often not the same as for adults.  I'm not sure I would think refractory over other issues like thyroid or potential cross contact. 

[Posterboy]

StephanieL,

I have/had Celiac diease.  It was not a wheat allergy and I know it technically not right to say "allergy" in this sense.  It is a delayed autoimmune reaction that produces antibodies and yes I had them that immediately went down in the first month on a gluten free diet.

Probably the worst week(s) of my life physically (terrible chronic fatigue and arthritis at an early age less than 30) literally having to drag my self out of bed and falling asleep setting up just so I could confirm what the doctor's needed for their test's waiting all week to find the antibodies were  "off the charts" as they say  all the while still eating gluten knowing in my body, heart and soul it was killing me.

My health has improved drastically since I first went on a strict gluten free diet but even then after a year or two I still had "glutening episode's" and know of other other Celiac's who have had the same experience.

As their body healed even trace amounts of gluten would/does bother them when in the beginning seemingly being able to "cheat"  a little without have the very serious reactions that seem to progress the longer they went from having cut gluten entirely out of my/their diet(s).

It was to the point I just wouldn't eat out of my gluten free home.  I alway's had to take my "Gluten Free" foods when I would visit someone or eat strictly naturally gluten free options like meats and vegetables because I never could be sure the broth or something else didn't have trace amount of gluten in them or even chili didn't have some thickening agent's in them etc and etc that would set off my "gluten allergy" ie Celiac disease.

But today there are so many more dedicated gluten free options that in someway's it easier than it was . . . . but alas we know that only last's till we get glutened again.

I still remember vividly eating "Bak** on M**N gluten free granola (an early dedicated gluten free product)  and having a severe glutening episode and that is the last time I ever ate their product's.

Think the same problem gluten-free Cheerio's has had recently.

See my profile for more information about me.  I do feel for Liz21.  It is not easy at any age to be told you can't eat this (medically speaking) but I resolved if I knew what to avoid I could do it and did most of the time.  Every time I would be/get glutened again I would go back to the drawing board so to speak and figure out again where I had missed the gluten.

I do notice if my Stress is worse I sometimes have flare ups and there is not an obvious source of gluten.  Maybe stress is part of it I don't know for sure.  Probably most of us have had flare ups and we weren't always sure why it happened. I will say Not only did my fatigue get better after the celiac diagnosis but my arthritis did too when I found out about Magnesium.  The stuff is wonderful when you find a good 100 percent Magnesium CITRATE form.  I  haven't been fatigued since. **** This is not medical advice

Jefferson Adams on Celiac.com reported Stress is common before a diagnosis maybe it is still common too when people have flareups?  As Jefferson Adams summarized "life events may impact the clinical appearance of Celiac disease or accelerate its diagnosis" it seem reasonable it might also affect flareups after diagnosis?

https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html

I hope this is helpful.

Posterboy,

[StephanieL]

I was asking because they are two completely different things and work by different mechanisms so I was unsure of which you are classified by. 

I think we all feel for any parent dealign with issues of a kiddo not feeling well.  I think this is a "look for horses not zebras" kind of thing.  It's hard not to go down a rabbit hole as a parent (or anyone looking for answers).  

[kareng]

8 hours ago, Posterboy said:

StephanieL,

I have/had Celiac diease.  It was not a wheat allergy and I know it technically not right to say "allergy" in this sense.  It is a delayed autoimmune reaction that produces antibodies and yes I had them that immediately went down in the first month on a gluten free diet.

Probably the worst week(s) of my life physically (terrible chronic fatigue and arthritis at an early age less than 30) literally having to drag my self out of bed and falling asleep setting up just so I could confirm what the doctor's needed for their test's waiting all week to find the antibodies were  "off the charts" as they say  all the while still eating gluten knowing in my body, heart and soul it was killing me.

My health has improved drastically since I first went on a strict gluten free diet but even then after a year or two I still had "glutening episode's" and know of other other Celiac's who have had the same experience.

As their body healed even trace amounts of gluten would/does bother them when in the beginning seemingly being able to "cheat"  a little without have the very serious reactions that seem to progress the longer they went from having cut gluten entirely out of my/their diet(s).

It was to the point I just wouldn't eat out of my gluten free home.  I alway's had to take my "Gluten Free" foods when I would visit someone or eat strictly naturally gluten free options like meats and vegetables because I never could be sure the broth or something else didn't have trace amount of gluten in them or even chili didn't have some thickening agent's in them etc and etc that would set off my "gluten allergy" ie Celiac disease.

But today there are so many more dedicated gluten free options that in someway's it easier than it was . . . . but alas we know that only last's till we get glutened again.

I still remember vividly eating "Bak** on M**N gluten free granola (an early dedicated gluten free product)  and having a severe glutening episode and that is the last time I ever ate their product's.

Think the same problem gluten-free Cheerio's has had recently.

See my profile for more information about me.  I do feel for Liz21.  It is not easy at any age to be told you can't eat this (medically speaking) but I resolved if I knew what to avoid I could do it and did most of the time.  Every time I would be/get glutened again I would go back to the drawing board so to speak and figure out again where I had missed the gluten.

I do notice if my Stress is worse I sometimes have flare ups and there is not an obvious source of gluten.  Maybe stress is part of it I don't know for sure.  Probably most of us have had flare ups and we weren't always sure why it happened. I will say Not only did my fatigue get better after the celiac diagnosis but my arthritis did too when I found out about Magnesium.  The stuff is wonderful when you find a good 100 percent Magnesium CITRATE form.  I  haven't been fatigued since. **** This is not medical advice

Jefferson Adams on Celiac.com reported Stress is common before a diagnosis maybe it is still common too when people have flareups?  As Jefferson Adams summarized "life events may impact the clinical appearance of Celiac disease or accelerate its diagnosis" it seem reasonable it might also affect flareups after diagnosis?

https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html

I hope this is helpful.

Posterboy,

 

Let's get back to the OP, OK?

 

Liz - does he have Celiac!?  If so, it might be a good idea to re- check his antibodies.    

You might want to be really strict with the lactose for a couple of weeks and see if that helps.  If not, you may just have to eliminate foods and see what helps.  

 

 

 

[GFinDC]

I agree with KarenG, time to get him tested for celiac again.  He may be reacting to hidden gluten or even cheating on his diet with friends.  Or it could be other food intolerances showing up.

The lactose intolerance may also be casein intolerance.  if it is casein intolerance he will react to cheeses also.  Actually anything with casein (milk protein) in it would be a problem.