Celiac Disease - anyone with experience of it.

[mum101]

I have just come back from having DS weighed and he has actually lost a little weight over the last 3 months. I know the chances are probably slim but I'm in a bit of a tizz.  His weight gains had been great up until 6 months.

The nurse essentially shared my cautious concern, talked about feeding him high calorie feeds and reducing his 4 bf a day.

She said it would be good to see some weight gain after increasing his calories and fat before I see her in about 3 weeks time and that if he doesn't gain then it would be timely to consider medical issues, particularly Celiac Disease. 

It had entered my mind before I went there, as a friend's son has it and I remember her telling us about it and I read up on it.

Has anyone got experience with Celiacs disease or have a child with it?

I'm feeling pretty anxious now, there is no family history so I've always been pretty relaxed about allergies and intolerances. 

[rinajack]

Charm HUGS.

Zara is having an endoscopy in a couple of weeks, and one of the things they are checking for is celiac.   She is a very poor eater, although we did see improvements after cutting dairy.  She showed 4 months of consecutive weight loss in the last few months of last year, which slowed (and hopefully reversed) after cutting the dairy.  She complains regularly of tummy pain.

I hope someone can give you some advice, it is quite stressful to think that something is wrong enough to make your child lose weight, even when they haven't actually been ill iykwim.

[KathrynK]

my cousin's dd has just been diagnosed at 18mo. She was ill for months, lost so much weight that her ribs all stood out and her stomach was distended, like starving children in famine countries. She also stopped walking, she was just so ill and weak she lost the ability to walk for quite a while.
We have no history of coeliac in our family so it was a bit of a shock. She had to go for blood tests and then an endoscopy to confirm the diagnosis.

She got better remarkably quickly once the changes to her diet were made, and started walking again not long after. Now she's small but you wouldn't know she'd been so ill, iykwim
Lots of hugs, hope it's not serious
xxxxxxx

[Mashi]

My mother was diagnosed with celiac disease in 1954, very shortly after the disease was even discovered. She lived her life with it, although was told she had outgrown it, and it wasn't until 1986 when she was 34 that she finally was re-diagnosed and learned that had been what had made her so ill for her entire life. 

In 1986 celiac disease was still virtually UNHEARD of - she used to mail order rice bread in at about $8 per loaf and it took 6 weeks for it to be shipped in, making eating bread a luxury. Same for rice pasta.  People used to give her a hard time thinking she was "dieting" not "on a special diet" and as she was very thin, she often felt ridiculed. As a result from these difficulties, she became very active in the national Celiac Association (Canada) and worked hard on education, research into foods (ie/ contacting companies getting ingredients lists, pressuring companies to make gluten free alternatives, working on trialing new recipes at home and adapting foods with gluten free ingredients, etc. She also worked hard on petitioning the Cdn gov't to consider celiac disease a disability, and provide a tax break to make up for the added expense of gluten free food).

So, I lived the majority of my life in a household with a celiac, at a time when little or nothing was known by it in the general population. I read lots of books, went with my mom to visit speakers, helped her in the kitchen, lots of things like that.

In a long round-about and indirect way, celiac disease is what caused my mother's death just a few years ago. I have always made it a priority of mine to help people out with what I know as a way to honour my mother.   So, although I have no experience of dealing with childhood celiac disease, I do have a good bundle of knowledge and resources, and am more than happy to help out if/where I can!

(As an aside, I am keeping my son gluten free until 12 months. My sister didn't with her children, and they are all fine, but I just have a nagging worry in the back of my mind. Although, that said, today I decided to try oatmeal, as it is occassionally tolerated by celiacs as sometimes in the milling of the oats, the gluten containing part of the oat is eliminated.....so I gave it a go, and will see how he is!)

[mum101]

Thanks for the chat guys, 

mashi, it's sad to hear your mum went through a lot of ignorance about the disease. It seems a world away from now, even Elizabeth on The View talks openly about it. But I imagine a good few people haven't heard of it. It's kind of scary to think that food can harm you that way.

[Spectra]

I don't know much about it myself, but wanted to offer hugs.    There is a sticky post on Celiac's discussion here that may be helpful to you.  http://babywhispererforums.com/index.php?topic=45966.0

[mum101]

thanks, I did actually see that... after I posted this   

I read a bit of it, it seems celiac disease has a lot of symptoms relating to toileting which Leo doesn't share. Sure hope it's a false alarm so to speak.

[Mashi]

Yes, celiac is malabsorbtion in the small intestine. The body can't absorb anything containing gluten, which is in wheat, rye, barley and oats. Although, lately lots of research has been done to suggest that many celiacs CAN have oats, as often the gluten part of the sheath is removed in the processing, but not all. 

As a result of the malabsorbtion, 98% of celiacs suffer from chronic diarrhea when they eat gluten, but some (2%) get extreme constipation. My mother was one of the 2% with constipation, and that was one of the reasons why it was so hard for her to be accurately diagnosed.   (Total aside, when my DS went onto gaviscon for suspected reflux, and he was extremely constipated, my GP told me that constipation from gaviscon was rare. (Even my HV was peeved that she didn't know what she was talking about...) So I asked if there was any gluten in the gaviscon powder, and told her I was curious because my mother was celiac. She told me that it is IMPOSSIBLE to have constipation with celiac disease, and that obviously my mother did not have celiac. I didn't even respond to her, I just pushed my pram out her door and have never been back to her since. It is AMAZING how much ignorance there still is about the disease, even among medical professionals - if you do start to look at the possibility of celiac, be prepared to face this kind of ignorance, and to buy and read LOADS of books on your own!)

Celiacs can also suffer from a skin condition called dematitis herpetaformis (Ugh, I might have the name slightly off, too lazy to google it at the moment....sorry!) from eating gluten, but it's not a case where the digestion and the skin problems need to go togehter.

[Erin (redstarfalling)]

Hey - I got here from your BF post. 

I've had about 5 friends over the years who have celiac, 2 of which were roommates, so I'm used to cooking for celiacs too.

My nephew has celiac.  I think he was about a year when they started the investigation.  I know my sister was extra cautious about starting wheat and oats because her husband had celiac too, but it didn't matter (and she breastfed for more than a year).  Once he went for the tests and she put him on a gluten free diet, he started gaining weight (weight loss was his primary symptom too).  At 4 years old, he now knows when someone offers him food, he very politely asks "Is it gluten free?"   Anyway, I guess I'm just saying that it's worth checking out, and even if the test is positive, it's very liveable.