Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Did Celiac Come Back?


VydorScope

Recommended Posts

VydorScope Proficient

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. :blink:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 57
  • Created
  • Last Reply
VydorScope Proficient

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 Proficient

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 Proficient

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 Proficient

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

jerseyangel Proficient

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

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 Veteran

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/


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VydorScope Proficient

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 Newbie

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 Veteran

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 Proficient

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? :D

GFinDC Veteran

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 Proficient

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: :lol: :lol: Thanks I needed that today!

VydorScope Proficient

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? :blink::D

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

VydorScope Proficient

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 Proficient

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 Veteran

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 Mentor

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. :D

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

VydorScope Proficient

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

Its coming back slowly. :P

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 Mentor

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 Proficient

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 Proficient

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 Veteran

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 Proficient
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 Newbie

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    3. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    5. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.