DH and DS might have gluten issues, but test negative. What should I do? - Mothering Forums

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#1 of 6 Old 03-17-2012, 01:09 PM - Thread Starter
 
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We suspect some sort of gluten intolerance in my husband and my 2 year old son but both test negative for the gluten blood test (sorry I don't know what is was called exactly).  

 

What would you recommend that we do?  

Obviously they shouldn't be eating wheat, but I would like to have some sort of diagnosis so (a) that we don't feel like it's all in our heads, (b) to keep us motivated to not eat wheat, and also (c) so others (grandparents) actually take it seriously.

 

My son has eczema, cracky/dry toenails like his dad's, random diarrhea, and lately he's been gassy a lot and waking at night seeming uncomfortable.  I say "lately" but I'm almost wondering now if it's something that has been going on for a while, and we've just sort of gotten used to him waking for no real reason.  He's just 2 and can't really explain how he feels, so that makes it a tad difficult

 

My husband seems get diarrhea when he eats wheat, but then he'll slowly creep back to it, and it doesn't affect him every single time, so he'll start to think that it was just in his head, and that he can get away with eating some here and there,  and then bam! he starts to have problems every time he has just a little bit.  It seems sort of cumulative.  I also think he's just so used to the digestive issues that it's become his "normal."   I've suspected for a while that he has malabsorption issues (cracking toenails, dry skin, stretch marks on his back from growing as a teenager, dark eye circles...just overall doesn't look vibrant)  ...but couldn't but my finger on the reason, but then when we start talking about his issues with wheat, he mentions that he's had these digestion issues his whole life and that his parents never thought anything of it because his dad was the same way, so they said that he just inherited his dad's "bad digestion."  Oh brother.

 

 

Anyway, what would you advise me to do in this situation?

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#2 of 6 Old 03-17-2012, 03:45 PM
 
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The blood test is only definitive if it comes up positive.  Negative results are neither here nor there.  If the symptoms are overwhelmingly pointing towards Celiac then you'll want to consider a biopsy at this point.  Celiac is genetic, so you could test your DH first.  If he tests positive you could forgo the test for your son and just assume he has it, too.  But once you are off gluten for a while, you cannot use this type of test; you need to be consuming it.


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#3 of 6 Old 03-17-2012, 04:00 PM - Thread Starter
 
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Can you just be "gluten sensitive" without having Celiac?  

 

Maybe there are some good resources that I can be pointed towards if you don't want to do a lot of explaining.

 

Thanks!

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#4 of 6 Old 03-17-2012, 04:25 PM
 
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You can be "gluten sensitive" without being Celiacs for sure. 

 

There are many good resources to check out.  The links below are focused on Celiacs however promote a gluten free diet as well. 

 

http://www.celiac.org/

 

http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html

 

This guy above has a pretty extreme website.  I like it but am put off by the donation parts.... the newsletter is great though.  I enjoy that he was trained at Bastyr University. 

 

http://www.glutenfreesociety.org/

 

I was tested Celiac 8 years ago and since lost over 140lbs.  I have always suspected my husband was at least gluten intolerant and finally convinced him 6 months ago to go GF.  His eczema and snoring have almost completely disappeared and he lost 30lbs which we didn't think he really was "over weight". 

 

I am currently reading the book Wheat Belly.  Amazing.  It is written by a traditional western MD whom treated diabetics and such.  He has found that traditional wheat breads, even the "good ones" have 16 or 17 new proteins that are unidentified, possibly GMOs.  Crazy. 

 

There are so many factors for GF.  The processed foods out there now are so heavy with other "fillers" that one can also be sensitive to the products ingredients such as sorghum, grains, corn, potato, you name it.  Most GF processed foods are not organic which is bothersome due to GMOs (corn, soy, etc.).

 

Such a tough road but hopefully you will weed it out.  Testing to me is good and bad.  Can identify and sometimes doesn't.  Starting with an elimination diet is a good start, but crappy to do :)

 

Good luck to you, PM me if you have questions, I may be able to help.

 

 


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#5 of 6 Old 03-17-2012, 04:47 PM
 
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Quote:
Originally Posted by SweetSilver View Post

The blood test is only definitive if it comes up positive.  Negative results are neither here nor there.  If the symptoms are overwhelmingly pointing towards Celiac then you'll want to consider a biopsy at this point.  Celiac is genetic, so you could test your DH first.  If he tests positive you could forgo the test for your son and just assume he has it, too.  But once you are off gluten for a while, you cannot use this type of test; you need to be consuming it.


Yep to all of this! 

 

When I have a gluten contamination it can take weeks for it to settle out. 

 

Wanted to also add... that if you are still nursing and you consume gluten, assuming you LO is intolerant, you can pass it to him as well.  Gluten is one of the top "fuss foods".

 

With my diagnosis years ago, I stressed to my family, both father and mother that it is genetic.  They still both suffer and eat gluten.  Even with my proof.  I wouldn't worry about other family members not believing you for your LO.   I'd hope they would respect your wishes. 

 


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#6 of 6 Old 03-17-2012, 06:25 PM
 
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Without knowing what testing you had done, it's hard to give any advice.

 

If it was alternative testing through a naturopath I would consider going to an MD for other testing.  They would need to run a Celiac Panel which is 4 or 5 parts to it and you really need all 5 to make heads to tails of it.  If you have had the Celiac panel and it was negative I would ask for the genetic test next.  After that and only then would i look at all to a biopsy. Again, this is what I would do (and did for my DS).  

 

 

Celiac dx is 1:133 (which may have changed again recently). Gluten sensitivity is even more so even if it isn't Celiac it very well could be a sensitivity.  The thing is when it comes to schooling and compliance, having and "actual dx" is necessary for things like a 504 plan if it is Celiac.

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