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Well this just sucks

Aziraphale

Veteran

So we just found out that my twelve year old daughter almost certainly has celiac disease. She still needs the biopsy to confirm, but the screening blood test came back with a very strong positive. We are all a bit in shock, since she has no GI symptoms. I'd taken her to a paediatrician because of her diminutive size. She has always been small, which was to be expected, because my partner and I are small, but this year she dropped off the growth curve. Turns out that a lot of cases of paediatric celiac disease are diagnosed because of growth failure, not intestinal trouble.

So the poor girl will have to go on the gluten-free diet, which means giving up hundreds of things she loves forever. Celiac disease is lifelong. Gluten is in EVERYTHING. Aaaaargh. Plus I'm a little nervous. I -- how shall I put this? -- lack confidence in the kitchen, and I'm going to have to learn how to make a lot of homemade gluten-free versions of things.

I'm sure it will all work out. The diagnosis could have been much worse. Celiac disease almost always goes into full remission if you adhere to a gluten-free diet. But still, it's a downer.

The good news is, the doctor said as soon as celiac kids go on the diet, they grow like crazy. My daughter is very happy about that prospect.

If any of you out there have any experience with this -- any useful tips -- I'm all ears!

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32 replies

Latest reply was from Aziraphale

JAileen

Veteran

This is exactly how my neighbor's son was diagnosed - he stopped growing for a couple years, and was the smallest in his class at sixth grade or so. After the diagnosis my neighbor threw herself into educating herself about this, and became an expert. He was into sports with a traveling team. This turned out to be one of the hardest parts, getting appropriate food on the road. The other hard part was making sure he realized the importance of eating appropriately.

Now her son is a junior in college and has caught up in growth, and prepares meals on his own.

Angie

(website)

Fashion Stylist

Oh, Elisabeth. I'm sorry. (((HUGS))). The new diet will take getting used to I'm sure.

But there IS a bright side (and your DD's growth spurt is top of the list). You can get and make gluten-free anything these days. It's not hard anymore. With a bit of practice, you'll all be fine. Thank goodness it's not a life threatening disease.

Anne from Oz has Celiac's so you should PM her.

catgirl

Veteran

I am so sorry you now have more on your shoulders. At least you know where to start now.... My son's close friend's brother has Celiac and also is eosinophilic (?). For a while he could onIy eat bacon and blueberries. He has added lots of foods but was never able to eat gluten or dairy. His parents have found lots of great items at Trader Joes and have learned to make all kinds of breads and other dishes for him. It is tough but there is so much more out there these days with the whole gluten issue being such a big topic now.

Anonymous

Yes, it's very easy to eat gluten-free now. Everything seems to be clearly marked, and there are an ever-increasing number of (very tasty) products available. Restaurants are also jumping on the gluten-free bandwagon, and there are many cookbooks available, too. Will you and your daughter be meeting with a dietician?

Carla

Veteran

Your daughter is old enough to be in the kitchen, so why don't you include her during this period of adjustment? You can learn to cook gluten free together. Kids are more likely to eat things they make themselves, and you will be encouraging her to learn skills she will need all her life.

Alassë

Veteran

I'm sorry for the upheaval to your cooking/eating out/socializing life, Aziraphale. I do think there are a lot of resources out there, or ready made food options, and am hopeful that you will be able to adjust pretty well after a research-heavy time period. Best wishes to you, and to your daughter on her projected growth!

Aziraphale

Veteran

Thanks for the encouraging words, everyone. It's true that there are a lot of celiacs out there (apparently 1 in 133 people), and I was relieved to see how many products some of our grocery stores stock. Everyone I talk to seems to know someone with it (actually I have two adult acquaintances who have it) but I'm still a bit nervous about the adjustment. What's worse is seeing my daughter so upset. She'll get over it, but right now she's so focused on what she will lose (no more beaver tails!). She is uncharacteristically subdued.

Xtabay, yes, we will see a dietician. The first step was the positive blood test with the paediatrician. Now we have a referral to Children's Hospital with a GI specialist, who will probably arrange a biopsy of her intestine. Once confirmed, we'll get a referral to a dietician who will advise us. I've been doing a bit of research myself in the meantime.

Echo

Veteran

I am so sorry. A diagnosis like this takes a huge adjustment for the individual and the family. But the best news is that you have discovered the issue, and her growth can catch up. I work with children and have had a number of students diagnosed with Celiac. They say that while they were initially really upset at the thought of what they would miss out on, once they started eating properly for their bodies, they felt so much better that they really don't miss anything at all. Best of luck to you and your DD; I agree about exploring in the kitchen together!

Nebraskim

Veteran

Try to not think about all the things she can no longer eat, but about the vast myriad of things she still CAN eat. And they are many and delicious, and for the most part, much more nutritionally sound. I have not been tested but I do not eat wheat. My allergist said that my exclusion diet works well for me and there is no reason for me to undergo the extensive and expensive testing (and for which I would have to eat wheat again for several months to prompt antibodies and even then, no guarantee I would test positive). Yes, it can be a challenge for her and for everyone and it is a loss of typical habits. But soon, it becomes second nature to eat gluten-free. In some ways, it's the reactions of others that makes it so hard. She is lucky to be caught early before she really begins to suffer.

Aziraphale

Veteran

Nebraskim, everything you say is very true, and we've explained this to our daughter. It's just going to take a while before she mentally adjusts! Right now she's in the "acute disappointment" stage.

Honestly, I bet the whole family will end up eating healthier. There are many silver linings to this particular cloud.

UmmLila (Lisa)

Veteran

I have a 13 year old niece who's also very small and pale, but my sister just attributes it to her being a picky eater so hasn't had it addressed. I wonder if she could also have celiac.

Aziraphale

Veteran

UmmLila, it's definitely worth suggesting. I was totally blindsided by the diagnosis. The doctor said celiac is surprisingly common, and can be silent. My daughter is small, but otherwise healthy-looking. She has been complaining of tiredness for the past year, but we thought it was because she's in middle school and has a lot of homework.

JAileen

Veteran

My neighbor also joined a support group that met monthly. She learned of restaurants that had gluten free options, grocery stores with special sections dedicated to gluten free, etc. It was very helpful to her. They went through this 7 or 8 years ago. I think the available products has expanded since then. I even made gluten free lasagna for a guest last year with the advice of my neighbor.

Aziraphale

Veteran

JAileen -- yes,a support group is a great idea. I'll ask the dietician if he/she can put me in touch!

Isabel

Veteran

I am sorry to hear that. As you probably know, celiac can damage the intestine making it hard to absorb nutrients : thus the lack of growth. I agree with everyone else that nowadays there are so many things on the shelf that are gluten free. Even gluten free Bisquick ( and pasta ) ! You can make pancakes, chicken pot pie, crusts and so on. You don't need to be fancy in the kitchen ! You just need to do a few things. The single best book that I have ever bought for basic kitchen skills is Kitchen Counter cooking lessons by Katleen Flinn. It reads like a novel. It gave me a lot of confidence. She has a website too.

PS...Polenta is awesome too !

Lucy

Veteran

I was diagnosed coeliac (as we spell it in Australia!) in November. I'm on a Facebook group Coeliac Disease in Australia which has provided an absolute wealth of info for me - I'm sure there would be something similar elsewhere, and maybe something specific for teens.
A couple of thoughts -
1. It is WAY easier than when I was GF 15 years ago. Now there are substitutes in every local grocery store. That said I try not to eat too much of the processed stuff, and I stick a lot to fresh foods. But they are good as transition food, there are lots of options out there.
2. A lot of people on FB said it was like a period of grief when they found out, but it lessened over time until it became the new normal. A bit like grief of losing a person, it lessens over time.
3. I think it would be hard for teens because they have to be responsible all of the time. Maybe talking to someone like a sympathetic dietician might help with this.
4. I keep coming back to this - of all chronic diseases, it is probably the best to have because it can be entirely 100% controlled by diet. No need to go to the doctor all the time; no checking blood sugar every day; should need no regular visits to hospital etc. So in a way at least we can order it and control it and it is much easier once you get into the routine.
5. Personally I found breakfast and dinner fine - dinner was not that different because we mainly ate meat and salad or meat and three veg anyway. But I struggle a bit with lunches - though I am getting there.

So that was more an essay than a couple of thoughts!
But in the meantime *hugs* to mum and daughter, it is all a bit of a shock and a steep learning curve.

anne

Veteran

Thanks for the mention Angie. Yes, I have a 12 year old daughter with celiac, diagnosed about 15 months ago along with her younger sister. She had no obvious symptoms, and was tested because I had been diagnosed (I had no external symptoms either, just iron deficiency)

DD10 was a more likely candidate, as she was very skinny, and she has really filled out since going gluten free - still slim, but more muscles and a healthy look. (also she had sometimes had stomach aches after eating pasta, and didn't like bread, pastry or wheat cereal)

You have received so much good advice already that I won't replicate, but I will say this - use this in between time between blood test and endoscopy when you are still supposed to eat it, to say good bye to gluten. I had a "gluten bucket list" - things I wanted to taste! Recipes for cake I hadn't got around to baking, things I'd wanted to try - churros were my example, and my favourite stuff.

I'll send this off and see if DD12 has anything she'd like to add from her perspective.

anne

Veteran

DD says "it is hard at first but you get used to it, and you don't miss the stuff you can't eat so much after a while."

Also, you have probably already learnt this, but if she gets a positive diagnosis you should test the rest of the family. That's how we learnt that not only my 2 older DDs but also my brother is celiac. DD8 isn't, but is supposed to be tested every 6 months to see if she develops it - she's also had the genetic test for it, which is positive.

Anonymous

Some of our grocery stores have nutritionists that will give you a free tour of the store to show you where items can be found for a special diet. You might ask. After awhile the idea of a food becomes better than it really is. The SIL of a good friend has celiac to the point that it has become life threatening, so it can be. I think this developed over time.

Aziraphale

Veteran

Thanks so much for the suggestions everyone! Anne -- yes, I have an appointment set up for next Friday with the doctor, so she can give me blood test requisition forms for the rest of us. Lucy -- I agree, it's way better than diabetes or lupus or other autoimmune diseases. The doc said almost always goes into full remission when you start the diet, and with kids their gut heals quickly, so usually in a few weeks they are much better.

Barbara Diane

Veteran

It's much harder on a child, my sympathies. My husband was diagnosed almost two years ago. and my best advise regarding packaged goods-cookies, pasta, etc. is to try, try, try different items. The first pastas we tried we strongly disliked, but we ultimately found ones that are good. Breads, well, since I'm very picky about texture I eat bread with gluten, but my husband again found that some are much better than others. And generally the breads taste better toasted.

stainedglass

The adjustment period after discovering a food allergy can be tough. I developed food allergies as a teenager, but my reaction was immediate wheezing, so my desire to eat foods that contained the offending ingredients was rather low ;-). I was lucky in that respect. Celiac is more insidious.

As others have mentioned, most chain restaurants either have ingredient lists online or in their store if you ask for them. If you're eating out, it's best to have looked at the ingredients beforehand; that way, you know that you're going to a place that safe. It's also useful to have safe pre-packaged snacks (some kind of gluten free trail mix, fruit and nut bars, etc) for when you're not at home and the food sources are questionable.

I'm not familiar with gluten free baking, but based on my adventures with dairy and egg free baking, it's best to find a cookbook that works from the limitations (aka a cookbook that in your case starts with the premise that all goods will be gluten free, instead of taking a recipe that has gluten and trying to substitute other items for it). The recipes from the vegan cookbooks worked out far better than the recipes with substitutes. Your local library might have gluten free cookbooks. Something else you may have to consider is if you need to worry about cross contamination in the kitchen. Here's a reference from a Canadian Celiac association.

Good luck.

MTBGirl

Veteran

I wish the best for you and your daughter in dealing with this. You are smart in learning as much as you can, being prepared, having a plan...
My friend (adult) was diagnosed after much suffering and is now wonderfully symptom free. I gave her a cookbook from America's Test Kitchen and she absolutely loves it. I've attached a picture. I have it too, it is really informative and I highly recommend it.

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rachylou

Veteran

I work in a GF bakery. We do food for a Celiac Camp for kids... Something maybe for your daughter to do. You get to go to camp without worries, be with people your age who understand, learn about being GF in a gluten world.

Totally tangetially, auto immune diseases are on the rise. I learned this at diabetes class last month. They, ahem, correlate with the decrease in diseases associated with vaccination cures. This doesn't mean vaccines are bad. This means far more probably we live long enough to see them, haha.

Sorry, that just popped into my head.

Adelfa

Veteran

You're right, Elisabeth, it does suck. Of course you will cope beautifully. But I have a DD with very serious and significant food allergies and sometimes I got SO TIRED of planning menus around what she could eat. I'm glad thought that you know what's wrong!

Nebraskim

Veteran

Checking back to give a huge thumbs up to the America's Test Kitchen Gluten Free cookbook. I do not do baking because I find all the substitutions annoying but there are things, like meatballs, that I wanted to keep in my rotation. ATK showed me how to use mashed potato flakes in place of breadcrumbs. A good comprehensive GF cookbook can really help you realize there are many things still on the menu, just tweaked a bit. Good luck to your entire family as you begin this journey.

Helen11

Veteran

So many good ideas here for you. I have seen a teenage friend go from skinny and miserable to healthy and happy after her coeliac diagnosis and change in diet. Not denying the adjustment is tough- but it will be so worthwhile!

Laurinda

Veteran

Big hugs, so sorry you have to go through this! On the plus side it is good to know what is wrong, and that it is treatable.

As others have mentioned, there is a lot of support for going gluten free these days as even non-celiacs are seeing health improvements when they cut back or or cut out wheat. It helps if I think of bread as just a boring bland filler or an 'edible' napkin for the real food.

You might peruse a local library or bookstore to find a cookbook that suits your tastes and kitchen time constraints. These are a few I like:
Well Fed by Melissa Joulwan
Against All Grain by Danielle Walker
Wheat Belly 30 Minute Cookbook by Wm Davis

Aziraphale

Veteran

Wow, thank you all so much for your excellent suggestions! I really appreciate the advice and kind words. I'm feeling better about this already.

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