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Celena

Confused About Symptoms In Toddlers

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Hello,

I posted a few months ago when i put DDs on gluten-free diet. DHs gram has dx celiacs and DH feels much better on gluten-free. but i was concerned then because their digestive and bowel symptoms got worse on the gluten-free diet. Everything else went away (asthma, intense irritability, eczema). well it turns out that they just dont digest rice or potatoes. they get tummy aches and D w mucus whenever they eat them.

SO, fastforward to now. we never did get a dx re gluten (or anything else yet for that matter) so they have been on G now for the last 2 weeksish. symptoms returned (behaviour, asthma) but seemed worse on oats days. so now doing wheat only and only in the mornings--no G after 1:00 (because they were crazy hyper and not sleeping well). i can clearly see that they respond in some ways to G but i hesitate to take them off of it, not only for dx purposes but because their BMs have been near PERFECT (well maybe not for DD2....she has been constipated this week). so now i am REALLY confused. they cant digest rice or potatoes, have multiple sensitivities (leaky gut i assume), have family history of celiacs, and react in some fashion to G. But they are so much more regular now on G than when they were off, i just dont know if it could be celiacs now. what do you all think? is it still possible that it could be celiacs even w out bowl problems...even tho they have bowel problems w other foods? i just cant see why they would have bowel problems w rice and potatoes and not gluten if it is celiacs. there is also a family history of Crohns....so maybe that could be the issue??

any thoughts on this would be great. thanks in advance :)

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Although mine is dx celiac, i found that she only fully cleared up from her exzema after i took her off dairy completely - but it was 6 months of trial and error. I know that many people on this board swear by the gluten free diet, if you believe in your heart of hearts that it could be something else, either in addition to gluten or that gluten is not even a thought, then trust your instincts!! even though dr's don't always agree... trust your self and do what you believe is right and if it is for tests, insist on it from the dr. (If you live or come to israel, i can give you a fantastic clinic that sees to all these things :D i only found out after being in hospital for a month <_< )

good luck

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crohn's is just the result of celiac damage. A lot of people have a gluten problem & do not have bowel issues. I suspect that your kids will get worse the more gltuen you give them. I think that if you want a medical test you test thru Enterolab.com.

I do not know why you would give them gluten when they were clearly doing very well off of it. Asthma is serious. My 9 YO granddaughter that is not gluten free but has 2 DQ 1 genes, is now overweight & has lost all the enamel off her teeth. she also has the asthma, rashes, hives, itchy rashes, constipation, grouchy... the other grandson has issues with cavities. Watch your kids closely for teeth problems if you are going to give them gluten. my grandkids also have every infection and ear infections, staph, flu, colds, anything that comes along, GD battled pneumonia all last year...

I agree that the very likely reason that they were having issues when gluten-free is that you were giving them dairy & soy. No one should ever have soy or dairy. But one thing that I have found is that if you eliminate gluten & do not eliminate dairy that it is not good for the digestion. at least it is so for a lot of us. The flip side of that is if you accidently ingest gluten a bit of dairy will help mask the pain, at least that is what I have observed, but it can also make it worse so beware... I think that in some people the combination of dairy & gluten counter acts each other & masks some of the symptoms, but not always as it is a weird balancing act. I also think that dairy in Gluten sensitive people is responsible for a lot of arthritis pain, espeically when they are not gluten-free. I also think gluten contributes to the arthritis, but think that if that person is also eating dairy that it is worse.

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How long were your daughters gluten-free? My son Ezra went through an ugly period where he got worse before he got better. That may have been what you saw.

Or, it could be multiple food intolerances, like the rice and potatoes you mention, PLUS gluten. If their asthma, eczema, and irritability all went away when they went off gluten, this is major. It's not a coincidence, it's something you must pay attention to.

Yes, it is totally possible to have Celiac with no gastro symptoms. Some Celiacs only have neuro problems-- difficulty concentrating and focusing, forgetfulness, irritability, over-emotional, etc. Some people only have Dermititis Herpetiformis. Some people have only the gastro symptoms, and some have all those and more. It's very variable!

I read, and responded to, your other thread on potty training issues, and I would say that at least one of your daughters does have gastro symptoms.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Although mine is dx celiac, i found that she only fully cleared up from her exzema after i took her off dairy completely - but it was 6 months of trial and error. I know that many people on this board swear by the gluten free diet, if you believe in your heart of hearts that it could be something else, either in addition to gluten or that gluten is not even a thought, then trust your instincts!! even though dr's don't always agree... trust your self and do what you believe is right and if it is for tests, insist on it from the dr. (If you live or come to israel, i can give you a fantastic clinic that sees to all these things :D i only found out after being in hospital for a month <_< )

good luck

Thanks for the support! i really do think that G is an issue and that celiacs is a good prob at least in one of DDs if not both. but i do wonder now that they are doing so much better off oats it isnt maybe an oat allergy instead of G...i will go w my gut on that.

thanks, if i am ever in Isreal i will look you up :) i hear it is beautiful!

I do not know why you would give them gluten when they were clearly doing very well off of it. Asthma is serious.

....my grandkids also have every infection and ear infections, staph, flu, colds, anything that comes along, GD battled pneumonia all last year...

yes i know, i keep getting the 'r u crazy?!' posts from ppl now that DDs are on G. But in my defense, the asthma is cough-variant only (no wheezing or difficulty breathing). and also, DD's symptoms all went away when we went on TOTAL elimination. we cut out G, dairy, egg, soy, nuts, corn, salicylates, amines, and glutamates. they were eating about 6-8 foods total. we had no idea which foods were the culprits so we had to reintroduce foods to see which ones brought back symptoms. and you know what? almost every food did bring back symptoms. they pretty much cant eat anything. and being that they cant eat rice or potatoes that makes a gluten-free diet very difficult. so frustrating :o i was beginning to worry about their nutrition. they were on such a restricted diet for so long that i knew/know i need/ed to find more foods they can eat. G was the last thing to reintroduce. we have tried everything else (except soy but i dont really think soy is very good for anybody). then finally i grudgingly put them back on G just to see and to get tests done. anyway that was a rather long defense of glutening my kids...sorry :rolleyes:

I agree that the very likely reason that they were having issues when gluten-free is that you were giving them dairy & soy.

that would be definite if they had been on either dairy or soy. i dont give my DCs soy and we eliminated dairy at the same time as G so that was totally ruled out as the problem. every time i reintroduce rice or potatoes both DDs get serious gastro symptoms. i have no idea why...but that is where it is at.

How long were your daughters gluten-free? My son Ezra went through an ugly period where he got worse before he got better. That may have been what you saw.

Or, it could be multiple food intolerances, like the rice and potatoes you mention, PLUS gluten. If their asthma, eczema, and irritability all went away when they went off gluten, this is major. It's not a coincidence, it's something you must pay attention to.

yes i agree but because they went off so many things i feel like maybe i was wrong about G to begin with. my gut (no pun intended :)) tells me it is multiple food intolerances. but WHY...?? i dont think it was just a G withdraw period because every time i give them rice or potatoes it is the same and i didnt believe it myself so i have tested a few times.

Yes, it is totally possible to have Celiac with no gastro symptoms. Some Celiacs only have neuro problems-- difficulty concentrating and focusing, forgetfulness, irritability, over-emotional, etc. Some people only have Dermititis Herpetiformis. Some people have only the gastro symptoms, and some have all those and more. It's very variable!

I read, and responded to, your other thread on potty training issues, and I would say that at least one of your daughters does have gastro symptoms.

i hadnt thought about it like that. i guess you could sorda say that DD1's accidents are gastro problems. i guess i just meant that when they eat rice and potatoes they have horrible symptoms and stools that are PALE gray/yellow colour but when they are glutened their poops look pretty good. but like you said it could be multiple allergies INCLUDING gluten. i mean really, they react to so many foods what would the chance be that it WASNT gluten...not very likely i am thinking :blink: .

thanks everyone for all the help in trying to figure all this out! :)

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Celena,

Try to let the "are you crazy" posts flow over you. :D A lot of us are so used to seeing gluten as poison, sometimes it's hard to shake that.

Hmm...

1st question-- I know you put them back on gluten partially for diagnostic testing purposes. Your post back in June mentioned possibly going through Enterolab. Are you still planning on using them? Or did you decide to do the more conventional blood testing?

If they've been gluten-free since June up to two weeks ago, and you decided to do blood tests, you're absolutely right- they need to be ingesting gluten for a significant amount of time to have any hope of the tests being accurate. (With both of your kids being 3 and under, there is a higher possibility of false negatives in the blood testing.) If you're still going through Enterolab, it says on their website that their tests are accurate up to a year after going gluten-free.

I know that's not the only reason you put them back on gluten, but I just wanted to mention it.

2nd question-- I know you've done a lot of eliminations with them. What foods are they currently FREE of, and what symptoms are they currently having? And how long have they been free of these foods?

You may already know this, so sorry if I'm telling you things you already know, but... I know that when you're doing elimination diets, timing is important. You've got to let the body have time to catch up to each new change. This is the way I've been told to do it. Is this what you're doing, too?

1) Eliminate all usual suspects at once.

2) Wait until you're completely symptom free for ten straight days.

3) If can't get ten straight symptom-free days, eliminate more foods until you can achieve this.

4) Re-introduce one food.

5) Wait for reaction. If there's a reaction, of course, ban the food. If there is no reaction for five days, the food can be considered safe.

6) If there was a reaction in step 5, wait again until you are symptom free for ten days.

7) Re-introduce second food.

A caveat in this method is that gluten often causes symptoms for longer than other foods after it's eliminated. It should work for foods other than gluten. It's nice and regimented- you can keep a schedule written down in a notebook as you go.

If gluten is a possible suspect, I think things become more complex-- especially if you want them to consume gluten for testing purposes. A problem's going to come up if you can't get them to be symptom-free for at least ten straight days while they're still on gluten. Then you've got to decide how to proceed, with testing or elimination diet.

If you include gluten in the elimination diet above, keep in mind that it may take awhile to become symptom free IF gluten is a problem.

BTW... to determine if they have a problem with oats, you should probably pick up some certified gluten-free oats, if you haven't already. You can get these online, and at some health food stores. Other oats are almost always contaminated with wheat! <_< So it's hard to say whether they're reacting to the oats themselves, or the additional wheat contamination. Strictly speaking, oats do not contain gluten, but they are so badly contaminated that virtually any Celiac will react to them. The certified gluten-free oats are grown in fields that have never been used to grow wheat, are milled in wheat-free environments, and packaged in wheat-free facilities, etc.

Sorry if my post seems long, or overwhelming, or redundant. Your story really grabbed me, especially when you posted about your daughter suddenly having accidents after being reintroduced to gluten-- those accidents have been a HUGE part of our Celiac journey, and have had a major impact on our lives for nearly four years now.

She is young, still, and sure it could be a phase. But if it continues for long, don't ignore it- we did for much too long. :(


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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I just joined this site, and am so glad to have found you! My 15 month old was diagnosed with dairy and soy intollerance at 6 months old after MONTHS of issues. He seemed to do better for awhile on the prescribed formula; however once he began eating table foods he became symptomatic again. I kept thinking that soy was somehow sneaking in. His height remained around the 95th percentil; but his weight went from a high at around the 60th percentile to the 10th percentile at his last check up. I met a lady with celiac who told me he exhibited many classic symptoms (his were: very bloated tummy, eczema, diarrhea, constant eating with no weight gain, fits (I know know this was because he was in pain!), waking up screaming in the night, and clinginess). After 2 weeks of being gluten, dairy, and soy free, his tummy is completely flat, he's gained 4 ounces, his appetite has decreased, his fits have stopped, the eczema is gone, he's sleeping through then night, and his diarrhea has decreased!! This has been a miracle to me!! His pediatrician couldn't get over how good he looked. He looks really thin now that the tummy's gone; but he's gaining weight. His energy level is incredible...I didn't think it was low before; but now he's nonstop action and so much happier! His gastro at Vanderbilt can't see him until January (they did put us on a wait list, though); but his pediatrician and I decided that we couldn't wait on an official diagnosis to take him off the gluten in addition to the soy and dairy.

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Celena,

Try to let the "are you crazy" posts flow over you. :D A lot of us are so used to seeing gluten as poison, sometimes it's hard to shake that.

Celena, yep, what she said :)

One thing I did not clue you in on is that for some of us that have awful food allergies, once we are gluten free for some time we can add some of those foods back in. I have found that there are a few that I have not added back in, really not interested in some of them.

For some people - especially kids I think, they seem to react to everything except gluten, but the gluten (&dairy) is what is causing the underlying problem. That was me about 15 years ago, when someone told me that if I would quit eating wheat my other food allergies would get better. Of course I replied something like "are you crazy? that is the only thing that I can eat!!" But I thought about it & I was so sick I was getting desperate so I tried it. & she did say that my energy level would improve & it did. I am also seeing this in my grandkids & my son, their food allergy list keeps getting longer...

Here are a few of the things that I used to be allergic to at the age of 25: corn, tomatoes, potatoes, beef, pork, black pepper, cayenne pepper, chili powder, english peas, split peas, barley, oats, mushrooms, all citrus, peaches, peanuts (not too bad), all sodas, coffee, tea, any combination of juices like apple & cranberry, (I can eat apples & I can eat cranberries, but I can not drink apple cran juice), cod fish, lima beans, chocolate, (although I could eat Hershey's chocolate cocoa powder), soy, dairy & a few other things that I have forgotten...

I can now eat corn, tomatoes, beef (although I do not because of the grains & hormones fed to beef) pork, citrus except for grapefruit (too scared to try grapefruit), peaches, peanuts - peanut butter is okay but the canned roasted nuts still make me sick, I switched to almond butter anyway, as I gave up PB when I read that it contributed to leaky gut, I am on for chocolate again - this seems to come & go. But I recently had a problem with brown rice, cut out the brown rice & I can eat chocolate again. I can also now eat white rice with no problems, although I limit it... I can even do potatoes when I am eating out or something but I limit them to once a month or so, mostly because I eat Paleo now.

So there is hope for the food problems, I would not worry too much about variety if they are eating some healthy foods, getting vitamins & getting a sublingual B12. My son grew up with the most limited diet that I have ever seen, I worried, but he is okay & his brain was very sharp. He lived on pork & beans & weiners, meat, he is very allergic to turkey, peanut butter & grape jelly, potatoes, & pasta sauce, & of course his beloved wheat, he is addicted to the stuff as is his son (& they all have a gluten problem) No fruits, no veggies.

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AHHHH half of my multiquotes didnt work. it took me FOREVER to fix up this post so it was readable....well, hopefully readable anyway ;)

Quote from
Ridgewalker
:

Celena,

Try to let the "are you crazy" posts flow over you.
:D
A lot of us are so used to seeing gluten as poison, sometimes it's hard to shake that.

Hmm...

1st question-- I know you put them back on gluten partially for diagnostic testing purposes. Your post back in June mentioned possibly going through Enterolab. Are you still planning on using them? Or did you decide to do the more conventional blood testing?

thanks, i am pretty much doing that :)

i would like to do enterolab but i just dont see that it is financially feasible at this time :(. so we are really trying to go the mainstream (free) route and hope something comes up. if not then i am not sure what the plan is. i am just going to try to get pedi (at appt on the 12th) to run every test i can get him to. cause anything he orders is free. i was thinking full celiac panel, RAST, and ELISA if he will plus i think i want lead test for youngest DD because she still mouths so much. but that is another issue. can anyone think of any other tests? actually i think i will start a new thread for that. please respond there.

Quote from
Ridgewalker
:

2nd question-- I know you've done a lot of eliminations with them. What foods are they currently FREE of, and what symptoms are they currently having? And how long have they been free of these foods?

currently it is all a total mess. but when we first eliminated back in spring they were free of EVERYTHING except gd apples, pears, a couple veggies, unprocessed meats, and rice and potato products (which were eliminated too due to gastro). they went along like that for quite a while with nearly not symptoms. i cant remember how long it actually was. i would have to check back in food diary. i say nearly no symptoms because it is tricky w chemical sensitivity. you cant totally eliminate a particular chemical, only try to limit it as much as possible. but if the chem builds up in the system over time, symptoms will come back and then you know that DC is getting too much and that you need to limit further. and then there is cross-reactions... i dont know if this is making any sense.

Quote from
Ridgewalker
:

You may already know this, so sorry if I'm telling you things you already know, but... I know that when you're doing elimination diets, timing is important. You've got to let the body have time to catch up to each new change. This is the way I've been told to do it. Is this what you're doing, too?

1) Eliminate all usual suspects at once.

2) Wait until you're completely symptom free for ten straight days.

3) If can't get ten straight symptom-free days, eliminate more foods until you can achieve this.

4) Re-introduce one food.

5) Wait for reaction. If there's a reaction, of course, ban the food. If there is no reaction for five days, the food can be considered safe.

6) If there was a reaction in step 5, wait again until you are symptom free for ten days.

7) Re-introduce second food.

A caveat in this method is that gluten often causes symptoms for longer than other foods after it's eliminated. It should work for foods other than gluten. It's nice and regimented- you can keep a schedule written down in a notebook as you go.

If gluten is a possible suspect, I think things become more complex-- especially if you want them to consume gluten for testing purposes. A problem's going to come up if you can't get them to be symptom-free for at least ten straight days while they're still on gluten. Then you've got to decide how to proceed, with testing or elimination diet.

thanks! this is a good model. i was working without one. it is loosely what we were doing. but w the chemicals it gets trickier :( they definitely havent been symptom free for 10 days on G. i am going to try really hard to clean up the diet other than G and see what happens. it is hard tho cause a lot of G products have chemicals and other foods they dont tolerate. our goal has always been no eczema, normal behaviour, no cough, not gastro prob, and no hot red cheeks. we can always manage this for extended periods but her cheeks always flare up and get at least a little red here and there. we have had a few days (since elimination started) where her cheeks were not red or even pink at all. they were so clear! but that almost never happens for more than a day or maybe two in a row...except maybe when she is only eating 5 foods and it is hard to keep that up for more than a few days or a week.

Quote from
Ridgewalker
:

Sorry if my post seems long, or overwhelming, or redundant. Your story really grabbed me, especially when you posted about your daughter suddenly having accidents after being reintroduced to gluten-- those accidents have been a HUGE part of our Celiac journey, and have had a major impact on our lives for nearly four years now.

not at all...your in depth post is TOTALLY appreciated :D

quote from
AidansMom2006
:

I just joined this site, and am so glad to have found you! My 15 month old was diagnosed with dairy and soy intollerance at 6 months old after MONTHS of issues. He seemed to do better for awhile on the prescribed formula; however once he began eating table foods he became symptomatic again. I kept thinking that soy was somehow sneaking in. His height remained around the 95th percentil; but his weight went from a high at around the 60th percentile to the 10th percentile at his last check up. I met a lady with celiac who told me he exhibited many classic symptoms (his were: very bloated tummy, eczema, diarrhea, constant eating with no weight gain, fits (I know know this was because he was in pain!), waking up screaming in the night, and clinginess). After 2 weeks of being gluten, dairy, and soy free, his tummy is completely flat, he's gained 4 ounces, his appetite has decreased, his fits have stopped, the eczema is gone, he's sleeping through then night, and his diarrhea has decreased!! This has been a miracle to me!! His pediatrician couldn't get over how good he looked.

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most people & everyone I think, with a gluten problem do not absorb enough B12, period, & the levels stated as acceptable is too low to start off with, so it is just an awful problem... affects the brain in a big way, especially for kids.

my son never liked veggies or fruits, has something to do with children & evolution, how their taste is heightened to not like bitter or sour foods to protect them from poisoning themselves, then some kids like my son, that had such a limited diet, never get over that. also they know subconsciously in their head that food makes them sick. I think this is part of the reason that kids get anorexic, that the base problem is gluten & dairy.

I hope that you get some answers thru the medical field, but I have my doubts that you will.

try to keep your kids strictly gluten free & dairy free & do not give them soy & do not give them too many gluten free grains - I really believe in being grain free except for the treats that we all need sometimes. But especially to be grain free when first gluten-free, then I think kids can add in the gluten-free grains better than adults, because their bodies heal faster & they can tolerate the grains better, is what I think... Their other food allergies should start to go away within a year, unless their villi are severely damaged.

People with a gluten problem fall into two categories, those that have naturally avoided gluten & those that "cannot" eat anything but gluten. The "cannot's" are because they are either totally addicted to gluten & or everything else they eat makes them sick. the avoiders will choose fruits & veggies over cake, I just smile when I meet people that say, oh I do not like cake... or I am not a bread eater...

You have not said anything about your husband, but I will volunteer this for other readers. men do not like to change their diet & they also miss the connection between diet & their children's health. My own son that has a gluten problem & has a wife & three kids with a gluten problem & actually two of those kids have 2 DQ1 genes each, the same as me, will not let them eat gluten-free & actually sabatoged his kids 6 month gluten-free diet by taking them to the movies & feeding them hotdogs. His reasoning was that it was "ruining his life". So his life is not being ruined while he has liver damage now & his 9 YO daughter has lost all the enamel on her teeth etc etc etc... frankly men do not do the research & they prefer to hide behind the "expert" doctors. I think sometimes even if it was their health on the line, that they still do the same thing, while I find that women who have a mind, fight back & do not accept something just because the doctor says it is so - at least that is what I did...

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