04-05-2012, 12:43 PM   #1
Crohn's Mom
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Experimenting with Gluten Free diet

We are going Gluten free as an experiment on JJ's health
He has agreed to a minimum of 3 weeks to one month trial.
I explained to him that even tho his previous biopsies said "no celiac" that it doesn't mean that he doesn't have a Gluten intolerance. That, and his blood tests showed "Possible Celiacs" previous to the colonoscopy.
It has been weighing on my mind for 10 months now that we should at least try Gluten free for him, but I didn't think he would be willing. I think that time is wearing on him and he is tired of not feeling good with no solutions or answers.
So, he has agreed that if we see even slight improvements after 3 weeks then he will continue longer; If not then he will go back to eating whatever he likes LOL.
I think it helps that I and even my husband (who has ZERO health issues!) have volunteered to do it with him, and we will all be very strict. I also had to agree to make his school lunches for him so that he doesn't have to try and figure out what he can and can't eat right away LOL. Easy enough on that part...I sure will miss my bread and pasta tho! haha.

So..anyone have any advice on this diet for us? I'm willing to have any tips, tricks, etc. to help us through this. I'm also going to keep a very detailed food journal during this process. I figure this is a relatively easy "experiment" that won't cause any unnecessary trauma to him and may even help a few of his symptoms
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and Austin (18)
DX: Crohn's 7/2013
04-05-2012, 01:35 PM   #2
imaboveitall
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Can't hurt, and is a healthy way to eat I've read.
For what it's worth, when diagnosing V for those seven horrible weeks, I took her off gluten for ten days and she STABILIZED. I was like, woohoo, that's IT. Celiac.
Then she started right back with sx again.

What are they considering as JJ's possible condition? You know how odd V is and how I think she has something else besides IBD so I'm really curious...?
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04-05-2012, 04:34 PM   #3
Josephine
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Good luck with diet, as for celiac disease in run Irish side 4 in one generation then my mum and my cousin. I am one with crohn which possible genetic link somewhere.
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04-05-2012, 04:58 PM   #4
Crohn's Mom
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What are they considering as JJ's possible condition? You know how odd V is and how I think she has something else besides IBD so I'm really curious...?
"They" seem to be not considering a thing quite honestly ! No one even seems concerned that he has dropped to the 5th percentile for his height and hasn't grown but a 1/4 inch in the last 2 years.
So...once again, I have been going over and over his blood results from the past year and a half and I am determined to figure out, or rule out, or SOMETHING to help him

He is being so positive already. I went Gluten free shopping while he was at school today and replaced an entire cabinet with just those foods, and the refrigerator as well to make it easier on him to know what he can and can't eat. He's made some negative comments, but he's trying hard to be positive and hoping it helps him in some way.
04-05-2012, 05:12 PM   #5
imaboveitall
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Oh for God's sake...are you kidding me?
With his sib's hx, they aren't aggressively seeking to find out what may be causing him to have those symptoms?? Arrgh.
I understand how you're feeling then, all too well so here's some stabbing for you and me
04-05-2012, 05:18 PM   #6
Josephine
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Really they should be active find out why the weight and height is not be absorbing by 'JJ'.

Sorry if words do not sound right, I can not think of way I want to be.
04-05-2012, 05:33 PM   #7
DustyKat
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WOW! WTG Mum, JJ and Mr T!

I hate that you have to be doing all this off your own bat T but it's so fab that you are.

Now, I have zero experience with gluten free but if ever you need advice on vegan, dairy free and/or sugar free then I'm the man!

Seriously though hun, I hope it makes a difference in JJ's life......Good Luck!

Dusty. xxx
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04-05-2012, 05:38 PM   #8
happy
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You had asked for some tips....

The nutrition in gluten-free foods can be quite different than in whole grain wheat, oats etc., especially the protein content, the amount of fibre, the amount of iron and vitamins (especially B vitamins).

Because rice flour that is not whole grain is the main ingredient in many GF foods, your son might find that he is hungrier sooner and craving processed sugary GF foods.

Many GF processed foods and flour blends have less protein in them. Check the labels and look for things like added bean flour or nut flour ( if tolerated, and the extra fat is OK) and products made with quinoa or amaranth for higher protein content. Try cooking with quinoa, amaranth and sprouted brown rice to increase protein, iron, and the amount of complex carbs.

This way he will feel satiated longer and have more sustained energy throughout the day.

Of course if he is very ill, you will want to start off with white rice, which is easier to digest and then gradually move on to more of the whole grain GF substitutes.

Also, if his stools are on the looser side, then you don't need to worry about adding in more fiber; however, if he develops some constipation on the GF diet then try adding back some more fibre, like adding rice bran back to baked goods, stirred into cooked cereals etc.

For the morning rush, I cook amaranth, brown rice or quinoa porridge with added fruit and spices in the slow cooker during the night. Sweeten with a little honey or maple syrup, if needed, add whatever milk he tolerates, and you are off to a good start for the day.

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04-05-2012, 06:24 PM   #9
dannysmom
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Danny was gluten-free for at least 6 months. (no improvement ... but we may try again) He did not find it that hard (especially compared to SCD) ... but he never liked pasta or pizza much (weird right!?). You can still eat all the meats, fruits and veggies you want so replacing the breads & desserts are the tricky part. Some tips:

- Danny really like these gluten-free english muffins (http://www.foodsbygeorge.com/enmuffins.html). We found them in a local health store but then started ordering them online. Danny had them for breakfast most days, sometimes with eggs.

- There are lots of gluten-free cereals in health stores (some normal ones are also gluten-free if they are made with rice only) Danny was not a big cereal fan.

- Danny likes nuts & tortila chips. (tortilla chips and potato chips are gluten-free).

- I did try a few different types of gluten-free flours for baking... most did not turn out great. BUT ... we loved muffin recipes with almond flour, and the Betty Crocker gluten-free baking mixes are great. We did find some really good pancake mixes (expensive) - so I only made them for Danny.

- Normal things like Rice Krispie treats are gluten free. Even most candy is gluten free.

- Danny mostly had potatoes for a starch with dinner (Hungry Jack to make quick easy single portions) but rice is an easy alternative.

- We did buy some gluten-free breads and burger buns. Toasted they are tolerable.

-Danny ate grilled chicken salads for lunch most days.

-be careful when eating out, ie some chinese recipes do add starch w/ gluten to the sauces - like chicken and broccoli. I used corn starch instead of flour to thicken gravy then.

Danny was also dairy-free ... if you are not then there is a whole load of dairy stuff you could also have for desserts! (ice creams & puddings, yum!)

Good luck!
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Last edited by dannysmom; 04-05-2012 at 06:36 PM. Reason: my 10th edit becaue I keep forgetting stuff
04-05-2012, 06:27 PM   #10
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Good luck Tracy and JJ!! Have no experience to share, just good wishes that it helps!
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04-05-2012, 08:59 PM   #11
happy
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I just wanted to mention that in Canada most brands of regular 'rice crisp cereal' contain barley malt extract which contains gluten, so regular Rice Krispie squares are not GF.

There are several brands of GF 'rice crisp cereal'; however, they are more expensive (of course).

This website is helpful for finding hidden sources of gluten: http://www.celiac.ca/index.php/about...at-to-question

I am not sure about products available in the rest of the world.
04-05-2012, 10:32 PM   #12
Catherine
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We cook gf cake mixes which taste good. Every supermarket seems to have different products and least in australia some of smaller supermarkets are cheaper on some lines than big ones.
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Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-05-2012, 11:33 PM   #13
Crohn's Mom
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Wow Thanks everyone for the encouragement, and especially the advice!

Happy..I may be picking your brain soon for more advice!
Re: the rice crispy treats ~ I actually researched those before I went shopping as those are one of his favorite treats. I found out that the Kellogs brand (most popular here) indeed do contain gluten, so we bought a GF brand; hopefully they taste good

In all my research so far I am quite surprised at how many items contain gluten/hidden gluten! I mean, Soy Sauce ? Really ??
Not quite as surprised when we had to do a complete "corn free" diet for Gab back in the day ~ that was quite a heart stopper ! It's damn near impossible to find a "packaged food" that does not contain some form of corn

Dannys mom, I'm definitely going to have to check out those english muffins ! I know JJ will miss his Bagels so that may be a good substitute !
We bought the almond flour today, as well as some GF bread crumbs, and GF pasta because we are planning on having Chicken Parmesan on Sunday for our Easter dinner and Gab's late birthday dinner combined. I told her we would make her a "normal" portion for her to eat and she said she didn't care and would eat the GF with us ! As a matter of fact after I told her everything I bought to do this today she said she was jealous !! LOL. I think she misses home cooking a bit being in college...even GF cooking ! LOL

Catherine we bought some GF brownie and chocolate chip cookie mix to try out, but not cake mix yet. Hopefully they are tasty
We also bought a loaf of GF Rice/Almond bread to try as well.

This is definitely going to be interesting!
I made JJ's first GF lunch tonight and he requested Roast beef and Turkey just rolled as "finger food" lol. (he doesn't' want to try the bread yet). I also gave him a watermelon slice, pineapple tidbits, sunflower seeds, applesauce, and a colby jack cheese block ~ oh ya and a few GF snicker doodle soft baked cookies I'm interested to hear what he thinks about his lunch when he gets home tomorrow
04-06-2012, 12:32 AM   #14
happy
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I hate to be the one to keep piping up, "but, that's not GF";however, you did ask for tips...

If the roast beef and turkey are deli meats, they might have gluten in them. I know that it seems crazy that meat products could contain gluten, but some do. It is used as a binder, filler and spice enhancer and is sometimes just marked as "flavour". If the package doesn't say gluten-free, you can't be sure. I usually send an email to the company and ask. Sausages almost always have gluten in them.
04-06-2012, 12:37 AM   #15
happy
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Oh and Crohn's Mom, I would be happy to answer any questions for you, but don't expect me to respond to any 'tagged' notices because everyone is far to 'happy' (me included--see the first line of this post!) for me to wade through the number of notices I get in a day!
04-06-2012, 02:01 AM   #16
DustyKat
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Ahahahaha, happy! happy! happy! At least my only incidental tags are when people are getting down and dirty and dusty!
04-06-2012, 07:08 AM   #17
dannysmom
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Boar's Head deli meats are gluten-free and those are most popular in US.
04-06-2012, 07:35 AM   #18
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Hi- I have been thinking about posting an update on my son but haven't been sure what I want to ask. He's still undiagnosed, but we are trying this gluten free thing as well.

The short version is that he had his scopes and we are not much the wiser as to what's going on. His upper EGD was fine. His colonoscopy was difficult, with looping and difficulty passing the sigmoid colon; also lousy bowel prep (which is apparently my fault but they need to revise their instructions). Anyway, they terminated the procedure at the transverse colon when he developed bleeding. He was admitted, miserable, etc. but that's done now. What they were able to biopsy and see was normal. I believe we have ruled out celiac disease.

Anyway, the GI said he's too little for pillcam, they're not going near his colon again for a long time, and why don't we try some food restrictions. We have not ruled out IBD but neither is there compelling evidence to proceed with more testing. Nobody but me is sure the growth is abnormal (I read your numbers with interest CrohnsMom! Mine has gained 2 lbs in 2 yrs. He is 6. Height velocity is also falling, though still not low enough to really raise their alarms. I keep wondering why we keep the stupid growth chart at all if they are just going to ignore it!)

We have been gluten, dairy, and soy free for two weeks. I see less bloating but not really much difference otherwise. I was sure he'd lose weight but so far he is actually up a little bit. So maybe we're onto something. We're going to keep this up for a month and then add one back in.

a couple of things-
==You can get gluten free soy sauce (la Choy, I think?) I have also seen gluten free tamari which works as a sub. I am currently using coconut aminos from Whole Foods since we are also off soy. Whole Foods is expensive but they have some good options.
==as someone mentioned Boar's Head meats are GF
==we've had three cake mixes in the last 2 weeks and all agree the King Arthur Flours one was far superior (my relatives thought it was better than the Duncan Hines we had alongside it)
==there are a couple of lines of GF sausage at costco which are tasty. We were eating them anyway before this because they're nitrate free - Amylu has a couple (inc. a breakfast sausage) and we like all the Aidell's we've had so far. (much cheaper at costco than elsewhere)

My son is eating a whole lot of chicken and rice (incidentally his favorite meal before we started this anyway). He's never been a big bread eater so that part has been easy. I am also keeping a detailed food diary; I still think it's very hard to sort out any offending foods. Is he less bloated bc of lack of gluten or bc of the reduction in carbs, for example...

anyway good luck to you and I will be following this thread for more tips and progress updates.
04-06-2012, 09:02 AM   #19
Dazzafarr
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There are more tests these days for ceoliacs
Which some doctors only do the old test.
Make sure he gets a bone density test to make sure.
I am currently on a gluten free diet which helps a bit
But I till get stomach upset from some gluten free stuff.
If you go gluten free, you need to cut out dairy
Just in case lactose intolerant, make sure u replace
With suppliments or calcium foods.
Be careful and do research on what vitamins you need.
Going gluten free can be good but u may miss out on what
Your body needs.
I find natural sugar helps heal the gut.

Grapes etc.
Make sure you isolate, diabetes and autoimmune disease.
Going gluten free can hide the diagnosis of ceoliac
So he may have to do the gluten challenge before going to a gasto
Ask the gastro for 10 biopsys as one isn't enough
I'm still undiagnosed with osteopenia and
Rashes and stomach pain.
It's a hard journey but gotto do it
04-06-2012, 09:16 AM   #20
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GAPS diet sounds interesting...

http://www.gapsdiet.com/GAPS_Outline.html
04-06-2012, 11:41 AM   #21
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I hate to be the one to keep piping up, "but, that's not GF";however, you did ask for tips...

If the roast beef and turkey are deli meats, they might have gluten in them. I know that it seems crazy that meat products could contain gluten, but some do. It is used as a binder, filler and spice enhancer and is sometimes just marked as "flavour". If the package doesn't say gluten-free, you can't be sure. I usually send an email to the company and ask. Sausages almost always have gluten in them.
Thanks Happpy ~ I bought Boars Head Brand and it is GF, also so is Dietz and Watson
Please keep chiming in all you like ~
I have done a lot of research but I by far I am a newbie at this and want to do it right! That's why I put what his first lunch was today on here

LittleC, Welcome
I'm sorry your son is having trouble as well. JJ is not quite as young as yours, he's 14. Our biggest concerns are his constant stomach aches, joint pain, low grade fevers, lack of growth, and delayed puberty.
Please feel free to keep adding any tips and advice, and also how your own son is doing.

Dazzafarr, thanks I have been doing a bit of research on the supplements, but I figure I will look more into that after the trial is over if we decide to keep him on it. If we do then I plan to contact his pediatrician and let him know what we are doing and see what his recommendations are, if anything, and go from there. The only dairy products JJ can see to tolerate are small amounts of cheese now and then, so we really don't do dairy now as it is.
We already know that he has Psoriasis, which is autoimmune, but nothing beyond that just yet.
04-06-2012, 11:49 AM   #22
Mayflower537
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I have a friend whose mom has celiacs and she herself has gone gluten free in an effort to alleviate some of her own problems, which this diet did.
She makes this awesome cookie recipe off the back of the bag of gf rolled oats they sell at Trader Joes; here is the recipe:

3 cups oats
4 tbsp butter
3/4 cup brown sugar
3/4 cups granulated sugar
2 eggs
1 1/4 tsp baking soda
1 tsp vanilla
1 cup peanut butter
1 cup (or more for my recipe) chocolate chips

Preheat oven to 350. Mix butter and sugar. Add eggs, baking soda, and vanilla and mix. Add peanut butter and mix. Stir in oats. Stir in chocolate chips. I usually put them in the oven for 7 minutes, then spin the cookie sheet, and cook for another 3-5 minutes depending on the size of the cookie. Super easy!

I know that doesn't help with the food you have to eat on a regular basis (non-dessert, I mean), but you don't have to give up cookies! Provided of course, none of the other ingredients are irritating to his system...

Hope the diet works for him.
04-06-2012, 12:12 PM   #23
Crohn's Mom
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Mayflower537 those sound terrific !!
JJ want's to be a baker/chef, so this is great to give him something to bake AND enjoy while he's doing this diet! Thanks a bunch
04-06-2012, 12:33 PM   #24
Mayflower537
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No problem. In my mind, they are a close second to my beloved Toll House recipe cookies.
04-06-2012, 01:03 PM   #25
happy
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...And the nagging voice, "but, is it GF?" speaks again...

In Canada, regular oats are contaminated with wheat and other gluten-containing grains during storage and processing, so they are not considered to be GF.

However there are several brands of "pure oats" that are certified as GF because they have not come in contact with the other grains. Of course, once again, these oats are much more expensive.

The regular oats will not necessarily have labelling that states they may contain wheat/gluten.

More info here: http://www.celiac.ca/index.php/about...-disease/oats/
04-06-2012, 01:13 PM   #26
Mayflower537
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Yes, the rolled oats sold at Trader Joes from whence this recipe comes are supposed to be certified Gluten Free. And I believe they are fairly reasonably priced.

http://www.traderjoes.com/fearless-f...article_id=251
04-06-2012, 01:34 PM   #27
happy
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Terrific! A great price. I wish that I could purchase those in Canada! I am just starting to order 'specialty food items' that I can eat in bulk, so that I can get better pricing. The more mainstream GF products get, the better prices for the consumer. Yay!
04-06-2012, 03:22 PM   #28
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Hi, I used to bake cakes as a hobby/small business and had a few clients with allergies. This is a recipe for Gluten free Cake:
250g (8oz) butter
250g (8oz) caster sugar
4 eggs
250g (80z) gluten free flour
2 tbsp milk
1 tbsp gluten free baking powder

Grease 2 8" round tins
Put sugar and butter in a bowl and mix well
Add eggs and mix well
Sift flour and baking powder into a bowl then stir into the mixture.
Add the milk and mix
Bake at 180 degrees Centigrade for about 20 mins, until the top is brown and the sides of the cake are beginning to pull away from the tin.

If anyone needs one, I have a really fab recipe for egg-free chocolate cake!
04-06-2012, 07:15 PM   #29
izzi'smom
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No advice, just good luck on your gf journey...it certainly is quite the undertaking (I thought of doing it in the past, but it overwhelmed me lol!)
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04-06-2012, 07:57 PM   #30
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Hi,

For starters don't buy the GF baked goods in stores. It is better to not eat any of the processed GF products when starting the GF diet. Instead stick with whole foods. Personally I wouldn't eat any sauces or seasoning blends at all. Single ingredient spices are the way to go.
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Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Celiac disease, (not Crohn's), thyroid cyst and nodules, Lactose / casein intolerant. My current bad list is: gluten (wheat, barley rye and oats), dairy, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, nightshades (tomatoes, peppers, potatoes), alcohol, and hard work. have a good day! :-) Paul
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