Did Celiac Come Back?

[VydorScope]

  On 6/9/2012 at 12:57 AM, jerseyangel said:

Well, you know what you have to do, as you've done it all before How does Tim feel about all this?

Well right now he has symptoms, and he wants them to go away. So that is a great motivator. Also if the problem turns out to be gluten there is hope that a lot of the other foods will open back up. His favorite food is Milkshakes, and we have him off all dairy right now. So I think he is probably pulling for gluten to be the only issue.

He is very smart for his age, so we have been able to explain the situation to him, and how we have to the elimination diet to figure out what is going on. Told him it was like Encyclopedia Brown or Alfred Hedgehog where we have to gather clues and work it out. In that regard it is much easier then it was when he was 18months old and had speech delays, hearing problems and so much more to deal with at once.

As for knowing what to do Dopey me... spent all that money and forgot to by a colander. Sheesh.

[VydorScope]

  On 6/9/2012 at 12:56 AM, Jestgar said:

Yep, what Lisa said.

Hi Vincent, I also remember you from previous years and I'm sorry you're back. I hope you find answers soon, for Tim's sake.

I think it's unlikely, but not impossible that Tim initially healed well enough to have no problems with gluten, but you have to realize, if something triggered it once, it will be triggered again (and again). Maybe this time he has issues without antibodies, or maybe he'll develop antibodies and damage if he eats gluten long enough. At least you already know the drill, and if removing gluten helps his symptoms, I guess you know the answer too.

Thanks Jestgar.

I was talking about it with my wife earlier and kind of thinking that with the superhealing powers of very young children maybe he healed up enough, and his exposure was low enough (he is mainly a carnivore LOL) that it took all this time to build up again? Who knows? Much of how our bodies work is still a mystery to us.

For those that do not know the story, please understand that every doctor at that time, 5 years ago, told us it was gone. That is every doc he saw in TWO separate states, 3 or four separate doc offices/chains, over a several year period. Even fellow celiacs began to doubt the original dx. He was that clean. They all agreed that celiac disease does not go away so they all said the initial dx must have been wrong. All of his symptoms were gone till now, and all of the testing failed to turn it up again.

I guess its time to relearn all the safe companies, re-find all the good gluten-free products, and etc. At least now we have iPhones so can carry notes and the web with us to the store. All those print outs were annoying.

[VydorScope]

So this morning he woke up with out a stomach ache... so that is a good sign. First time recently at least. Be we have removed so much from his diet that we will have to do some re-adding to see what happens... but that is not a problem for this week at least.

[jerseyangel]

  On 6/9/2012 at 1:54 PM, VydorScope said:

So this morning he woke up with out a stomach ache... so that is a good sign. First time recently at least. Be we have removed so much from his diet that we will have to do some re-adding to see what happens... but that is not a problem for this week at least.

Definitely a good sign--I was wondering how he did.

[VydorScope]

This is not helping his new-food-a-pobia one bit btw!

[jerseyangel]

  On 6/9/2012 at 2:08 PM, VydorScope said:

This is not helping his new-food-a-pobia one bit btw!

I wouldn't think so, poor kid. I think your making it a bit of an evidence gathering game is a great idea, and as he feels better it'll get easier on him.

[GFinDC]

Hi Vincent,

I think you are right, he had it all along but wasn't feeling symptoms. There are a couple of people on the forum now who have celiac but don't experience any GI symptoms from it. Silent celiac is the term they use when people have celiac but don't have symptoms. Their celiac was discovered by "accident" when being tested for other conditions. There are a couple brands of corn tortillas that work ok for wraps and such. Mission brand corn tortillas are good and La Banderita brand works ok for me so far too. I made ham and eggs for breakfast today. I put the corn tortillas in the frying pan right on top the eggs after I fljp them once, and put the lid on. It only takes a minute or so for the steam and heat to soften them. They are nice and soft and easy to fold that way. I used to run water over them under the faucet and then nuke them for 20 seconds, but my microwave broke. But the frying pan works just as well.

It's good to hear young Mr. Tim is feeling better today. The beginning of the gluten-free diet can be kind of back and forth as far as symptoms go. The first 3 or so months may be the rockiest part. Gut healing can take up to 18 months or more per some recent studies.

It would be a good idea to have TIm's vitamin and mineral levels checked in case he is low on any of them, and his thyroid function. Thyroid problems are common with celiac and mal-absorbtion can cause vitamin defiencies (or something spelled similar to that .

Tinkyada pasta is cheap and good.

Oh, don't forget to search for the Halloween candy threads or snack threads also. There is a microwave gluten-free bun recipe thread somewhere on here started by lonewolf. Might be something Tim would like to try himself, it is very easy and only 90 seconds to make. There is even a chocolate version.

Some starting tips: (All may not apply)

Not eating in restaraunts

Eating only whole foods not processed foods.

Eating only food you cook yourself, think simple foods, not gourmet meals.

Taking proboitics.

Taking digestive enzymes.

Avoiding dairy.

Avoiding sugars and starchy foods.

Avoiding alcohol.

Avoiding soy.

Some threads with good info:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Celiac Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

[VydorScope]

Spent time reading through my notes from when he was 18 months old and we first did all this. All the symptoms are the same now as they were then. 3 days now he has been gluten-free and getting better each day. The food diary does not lie, took him off all the things the scratch test said, no effect. Take him off gluten, the next day we see results.

I guess if this holds true till next Friday we can start planning re-introducing the other foods and see if they bother him. We had to pull soy/dairy when we first went gluten-free too but eventually we were able to add it back, so hoping the same holds true again. Esply dairy.

[Mom2J112903]

When my son was able to eat he had to be gluten, dairy, soy, nut, lemon and flax free. Even on tube feeds and the occassional frozen yogurt treat he needs dairy free. He is one child that will never be able to have dairy again.

[GFinDC]

I wouldn't try dairy again so soon. The body doesn't heal overnight. He needs some time to adjust to his new diet and also get back to feeling better. Dairy is not going to help with that. If he had symptoms from dairy, it would be better to wait a couple months at least. Just my opinion, free so you know what they say about free advice. There are dairy free substitures available for milk, like almond and hemp milk and coconut milk. Also Daiya makes a pretty good cheese sub. They are cheese-like shreds in a white and yellow plastic bag. They work fine on a sandwhich or wrap and even melt ok. There is even coconut ice cream in the stores now "So Delicious" is the brand name.

[VydorScope]

  On 6/11/2012 at 4:12 PM, GFinDC said:

I wouldn't try dairy again so soon. The body doesn't heal overnight. He needs some time to adjust to his new diet and also get back to feeling better. Dairy is not going to help with that. If he had symptoms from dairy, it would be better to wait a couple months at least. Just my opinion, free so you know what they say about free advice. There are dairy free substitures available for milk, like almond and hemp milk and coconut milk. Also Daiya makes a pretty good cheese sub. They are cheese-like shreds in a white and yellow plastic bag. They work fine on a sandwhich or wrap and even melt ok. There is even coconut ice cream in the stores now "So Delicious" is the brand name.

Almond is out, so is soy but we already have So Delicious Coconut Milk, So Delicious Coconut Yogurt, So Delicious Coconut Ice Cream. Can you tell we like the So Delicious Company?

[GFinDC]

Hah, yep, I am getting the idea on the So Delicious items. There is also Tempt brand hemp milk available in some stores.

Here's the microwave bun thread/recipe I mentioned before. It's pretty long but there are a lot of alternatives people suggested for it.

Easy yumy bread in minutes lonewolf

The Tempt milk is hemp derived but doesn't have any hallucenigenic content. I think they smoke that all out first before they make the milk. Heck, I don't know how they make it. But it tastes fine.

Open Original Shared Link

[VydorScope]

  On 6/11/2012 at 10:28 PM, GFinDC said:

The Tempt milk is hemp derived but doesn't have any hallucenigenic content. I think they smoke that all out first before they make the milk. Heck, I don't know how they make it. But it tastes fine.

:lol: Thanks I needed that today!

[VydorScope]

So day 4 in the bank. Claims his stomach is not bothering him and when I asked about acid reflux he said "just a little bit, not even enough to count" so I guess that is good?

The only thing is he is exhausted. So maybe that will just take longer to clear up?

[VydorScope]

Well as of today he had a little stomach ache late in the day (used to wake up with them and have them all day), no other symptoms. So far so good I guess...

We have almost 100% of gluten exorcised from the house. All that is left is dog food and some cereal that I am eating up. Tossed most of old pots, and etc.

What about plastic serving spoons, ladles, and the like? Think they can be cleaned enough?

[psawyer]

  On 6/13/2012 at 11:25 PM, VydorScope said:

What about plastic serving spoons, ladles, and the like? Think they can be cleaned enough?

Some people here will tell you that plastic must be replaced, is evil, should never be used, etc.

I take a pragmatic approach. Plastic is a material which can be damaged by use over time. If it is scratched, replace it. Do the same with china, non-stick pans, and any other scratched material.

Wooden utensils and cutting boards are porous by their intrinsic nature. Assume that they need to be replaced.

[GFinDC]

Hi Vincent,

Good for him, 4 days is great!

Older plastic that is all scratched up may be hard to clean. but a smooth plastic surface should be fine. Plastic is pretty impervious unless it is old and beat up/scratched up. Most metal is easy enough to clean also. I scrubbed my stainless steel pots with steel wool and then boiled soapy water in them a while. That may have been over kiill, but it worked. I did get a new toaster and plastic items, They say non-stick pans are kind of a problem when scratched and of course non-stick coatings themselves are a heath risk (PFOA'S). Non-stick coatings are not really good for anyone.

Being tired is normal. That should change after a while though. He needs some time for his gut to heal and start absorbing vitamins and other good stuff correctly. Also the gut bacteria can go through a change/die off as the strains adjust to the new foods and lack of previous foods. Also the villi regrow and that provides more surface area for buglies to inhabit. Regrowing villi can take some energy too. That could cause some tiredness also. It's a perfectly normal process though. That's where the probiotics can help, getting plenty of the good bacteria in there to colonize the new digs.

Basically a lot of back and forth with symptoms, forward and backwards progress seems to be the norm for many people when starting out. But kids heal fast so maybe he will skip some of that.

[Lisa]

Vincent, make sure you have Tim on some good kids multi vitamins. It will help him with the transfer in diet. AND pro biotic are a great help for healing the intestine.

Water and pure pear juice will be helpful.

So glad you are seeing improvements.

But, you're an old shoe here. You know this stuff.

[VydorScope]

  On 6/14/2012 at 1:59 AM, Lisa said:

But, you're an old shoe here. You know this stuff.

Its coming back slowly.

Reading the posts here is bringing back a lot of memories of a life I though we left behind. Ah well, as I tell people if you are going to have a life long disorder, Celiac is not as bad as most, like Parkinson, or leukemia. At least a basically normal life is possible with out any drugs.

Who liked bread anyways!

[Lisa]

  On 6/14/2012 at 2:19 AM, VydorScope said:

Who liked bread anyways!

Odd thing about me is that I never liked bread, pasta or beer. And donuts smell awefull!!!! How odd, and I consider myself one of the lucky ones.

[VydorScope]

So he had a it of a relapse last night, got worse as night went on. Not sure why/how... but so far today he is good. Hrm.

[VydorScope]

Losing ground... not sure why. There was one possible point which his food might have gotten contaminated, so we are holding on that. If he starts turning around again and getting better then we can mark it off to that, but otherwise... have to wonder if we are on the right path or not now.

[GFinDC]

Sorry Tim is not feeling well Vincent. He showed initial improvement on the gluten-free diet right? So that was the result of someting, most likely going gluten-free. Having ongoing back and forth symptoms is not unusual or strange IMHO when new to the gluten-free diet. It might help to be sure he is eating a really clean diet for the first few months. He is old enough to keep a food log? Does he know about washing his hands before eating? How he did he get CC'd? It's very easy to do that's for sure.

Sometimes Pepto Bismol helps for symptoms of glutening. A good big slug every 4 hours may help ease symptoms. Plain old aspirin can help too, and lots of water.

[VydorScope]

  On 6/15/2012 at 10:55 PM, GFinDC said:

How he did he get CC'd?

He dumped his gluten-free gummies out on to a place mat and it was not till he was already eating that I realized he was using one we had not gotten to in our degluten the house project quite yet. I do not know if it had gluten on it, but it is possible.

[Mom2J112903]

Has he ever had any other GI testing done? Celiac was just the "tip of the iceburg" for my son.