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Korwyn

Member Since 13 May 2009
Offline Last Active Sep 05 2014 11:11 AM
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Topics I've Started

Advice Getting Our Granddaughter Tested

08 July 2011 - 04:39 AM

Our granddaughter is 4 and is showing some of the classic childhood presentation of celiac disease. My wife has had the genetic testing and she carries DQ8 and DQ6. We know the genes are present and my wife is slightly sensitive to gluten. There is also Northern European and Irish descent on all four of our granddaughter's bio-grandparents.

  • Stunted growth ("She's just small"). No, she is in the BOTTOM 2nd percentile for growth (Yes, I understand there has to be somebody in the bottom percentile or there wouldn't be a bottom percentile). However, she was normal weight/length at birth and not premature. Her dad is normal height (5'10), and her mom is above average (5'10). There are not many short people in her genetic pool for the last three generations, and most are above average height (6'2", 6'5", etc).
  • Raccoon eyes ("Oh, that runs in the family"). No, really. As in people ask, "Did she fall down?", "She looks like somebody punched her in the eyes!", "Does she have allergies?", "Does she not sleep well?", etc. Within days of when she stopped breastfeeding! The formula they put her on had wheat as the number two ingredient!!
  • Protruding belly ("Oh, she'll grow out of that"). She looks severly bloated all the time, like somebody needs to feed her Gas-X.
  • Thin hair. It is long and silky, but very, very thin.
  • Bruises easily

We offered to pay for genetic testing and our son's fiance (not her mother) said, "Well you can but we're not going to eat like you guys do." We certainly can't afford to pay for a full blown lab and biopsy out of our pocket. We can't get them to bring it up to her pediatrician, and our son won't press the issue as he is so passive and afraid of making decisions he'd be hard pressed to decide to move out of the way of an oncoming freight train. Her mother is not someone we want to get involved in this for a number of reasons (all bad).

Does anyone have any ideas on how to get them to talk to the pediatrician and look into this or am I just being hyper-sensitive (since I DO have celiac disease as do my Dad and sister)?

Casein Or Dairy Intolerance (Iga)/raw Milk

26 June 2011 - 02:54 AM

I have a question for those who have an intolerance for Dairy. I have been violently intolerant of dairy some time. I tested positive for IgA on Casein, and eating things with butter triggers a fire in my stomach and powdered milk (don't ask) usually results in projectile vomiting. Other reactions to cow's milk products range in between severe indigestion to having to go to bed for the remainder of the day I'm so sick.

But what I have just discovered over the last few weeks is that I can consume raw cow's milk, cream, butter and raw milk products with no ill effects. It is not that I've become able to tolerate dairy in general because on Thursday I had three small waffles (about 3 inch around waffles) made with regular butter and that wasn't a good experience at all.

Has anyone else had this experience?

New Gluten-Free Certification Coming

13 June 2011 - 10:36 AM

http://www.digitaljo...l.com/pr/335626

"...a new science-based gluten-free certification program is now available from the leading organic certifier Quality Assurance International (QAI), and the healthcare nonprofit National Foundation for Celiac Awareness (NFCA)."

Coping With Kisses

06 June 2011 - 01:26 AM

I'm happily married so I don't have to deal with the dating aspect of this, but I thought this was a nice article. It is especially relevant to me because in the last few months I've had to start having my wife warn me if she is wearing certain lipstick (or any) for that matter. :/

I did like this quote from the article though:

In an email discussing our airport picnic date, this is what I wrote: I have a special request. Do you mind washing off your face and rinsing out your mouth after eating your regular double egg muffin combo whatchmacallit at BOI big smile? It may seem like its not necessary, but it does make a difference to know that when I give you a kiss, I will have the peace of mind that it is gluten-free. D***, sometimes asking directly and specifically for what you need is hard.


Isn't that so true? And tiring too.

Your Top Two Pieces Of Advice

03 June 2011 - 02:58 PM

I haven't seen an identical thread, so I thought this might be an interesting thing to try.

Here's the setup! :)

Each poster posts their top two pieces of advice! Simple enough. With all that you now know and have learned and experienced since you went gluten free, what are the TWO things you wish you had known at the outset?

Don't worry if you post something that is the same or similar to what someone else posted, because it will help reinforce that for the newly diagnosed. I hope we can keep them short so that they will be easy to remember.