18M Old - With Genetics Against Her

[Aprilelayne]

Its been a week and:

1. definitely reacting to strawberries.

2. And the almond milk is making a difference!!! Its only been three full days, so I know she still has soy in her system, but her belly is noticably smaller and her diaper was reasonable yesterday morning!!! She only pooped once in the last 24hrs too!

[mommida]

could you go back to your food journal chart and see if there is any evidence of a 12 day damage cycle and healing for the allergens you removed?

If there appears to be a 12 day reaction that could be eosinophils causing some havok and causing the reflux symptoms.

[Aprilelayne]

Sorry for the delay in an update, I'm still trying to decipher how I feel about it.

We are done with testing from the GI for now.

Official diagnosis? "Functional Diarrhea"

Yep, that is where we end this journey. That due to her continue steady growth and maintenance in the 90% in height and weight, that obviously she is absorbing things just fine and has no physical impairments from the diarrhea.

1. continue with the probiotics

2. continue with additional fiber in diet to help with the bowels

3. chop off food into smaller pieces and purees to help improve her reflux issues.

And to call if the severe liquidy diarrhea returns.

On my own I've identified an allergy to strawberries which she confirmed and diagnosed based on my commentary.

I switched her off of soy milk and noticed an improvement in the bloating and amount of gas.

She is down to only drinking about 14oz a almond milk a day, but since she is so limited on her dairy, we need to make sure she's getting calcium in her vitamins somehow.

She has improved in her feeding issues with textures and such, which is why the reflux has gotten worse. But the GI doesn't want to scope her unnecessarily right now since she's thriving. If we have trouble again, she will scope to check for inflammation and damage.

So while she has improved for her, she is still not 'normal' with her peers in regards to her stools. The GI has provided sufficient documentation for the daycare to allow her to continue attending, that she's been tested for pathogens and is under treatment regarding her diarrhea.

I don't like the diagnosis, it seems the same as my IBS, meaning 'well we don't know why she has diarrhea, but she does.'

[frieze]

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[nvsmom]

Your poor daughter.

So you are not pursuing any more celiac testing? If that is the case, I suggest you go on the gluten-free diet together for a few months to see if it helps... it can't hurt, just causes a bit more hassle at the grocery store.

I recommend this because with hindsight, I know that I was celiac as a baby and child except that I had C with the stomach aches instead of D. My doctor said "she is one of those people who gets stomach aches after she eats". I was above the 90 percentile for height my entire childhood until grade 6 when I stopped growing; I was the tallest kid in my school at that point. I looked like I was thriving but I had joint pain starting, stomach aches 1 or more times a day and headaches.

If you give her calcium supplements, I wouldn't worry about not consuming dairy. Dairy does have lots of calcium in it but it's actually not a very absorbable source. Vegetables are a better source of calcium because your body takes it up much better from there; remember that a good portion of the world's population does not drink milk and their rates of osteoporosis are actually less than ours.

[Aprilelayne]

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I've read through the attached documentation and quite a bit of it was very clinical and beyond my current understanding. Could you elaborate a little bit?

My daughter does struggle with year-round rhinitis along with her asthma and ezcema.

Those confirmed diagnosis were the justifications and explanations given to me regarding her elevated IgE.

(her stools and parasite tests all were negative)

I'm curious if there is more to it than what I've been told?

[Aprilelayne]

Your poor daughter.

So you are not pursuing any more celiac testing? If that is the case, I suggest you go on the gluten-free diet together for a few months to see if it helps... it can't hurt, just causes a bit more hassle at the grocery store.

For now mentally I'm taking a break on the matter, unless if her severe issues return.

We will likely go gluten-free for the two of us if in fact the problem continues and delays her potty training efforts.

Luckily she is still not a big pasta or carb eater in the adult sense. If she ever gets over her addiction to saltines and graham crackers, she would have minimal carbs.

Specific to me however, since resuming a gluten-filled diet (for my personal testing in November?) I have noticed increased achiness and stiffness in joints. Granted it may be my body reminding me that I'm getting older, but I've made note of the days its worse than others. Its typically achiness in the mornings while I tend to have my gluten foods with my evening meal. The amount of bloating is remarkable since I'm slightly obsessive about weighing myself. In a given day I may bloat upwards of 3-5lbs I just have to remind myself that I am going through this for the testing and potentially to get more ammunition for continued testing for my daughter. If I do come up positive, then we have the link enough for her pediatrician (whom I love, and she supports the dx) she will give her the diagnosis even w/o the gastro confirmation.

Oh the calcium thing? I don't focus on it too much since the almond milk does have a surprisingly good amount of calcium in it. Her multivitamin does have the correct amount of Vit D as requested and we will see if there is marked change when we re-check her levels at her gastro followup in 4months. We at least have a baseline for her vitamins and IgE for now.

[GottaSki]

Please do not dismiss your symptoms as getting older, stress, overwork, hormones or anything else. I did for far too long, because doctors reinforced that premise regularly

Hang in there for testing - for both you and your daughter!

Good luck to you both

[frieze]

I've read through the attached documentation and quite a bit of it was very clinical and beyond my current understanding. Could you elaborate a little bit?

My daughter does struggle with year-round rhinitis along with her asthma and ezcema.

Those confirmed diagnosis were the justifications and explanations given to me regarding her elevated IgE.

(her stools and parasite tests all were negative)

I'm curious if there is more to it than what I've been told?

. Parasitic disease including the following:

a. Cestodes (Echinococcus).

b. Trematodes (Schistosoma).

c. Nematodes.

d. Ascaris.

e. Strongyloides.

f. Ancylostoma.

g. Capillaria.

h. Toxocara

these are all parasites, has she been tested for all of them? and what allergy workups has she had? (sorry if you already mentioned)unfortunately what i got out of it was that oft no answer is found...

[Aprilelayne]

Long time no posting.....which is good I suppose.

Just got called about our followup appointment for my now 24month old daughter, and thought I'd start rattling off for my own record of the changes since our initial visit in October:

-Continued 'functional diarrhea'

-increased flushed and warm cheeks. No pattern recognized yet, two to three times a week.

-eczema has worsen on buttocks and face? around chin (possible food allergen?)

-Variety of food textures accepted now, her choices are now comparable to a normal picky toddler

-much better mood on days she is fruit-centric (she will bypass the provided lunch and opt for applesauce or fruit choice I send)

-bloated belly still noticable and disproportionate to amount of food.

-regularly skips dinner (not concerning though...its typical on heavy lunch days)

-strictly on almond milk now

I am hoping we at least do another round of blood testing to compare to our initial testing in October. She does not have the liquid explosive and acidity diarrhea currently, but has maintained her version of normalcy with soft loose stools.

We have her normal ped appt on 2/11, to discuss food allergies for the flushed/warm cheeks and her worsening skin.

*myself? I couldn't continue with the gluten challenge and could not get my GP to conduct the testing for myself. Had to get a new GP and start a new history with them, so I went off gluten again to regain mental clarity and start having energy again. I'm about to just chalk it up to IBS and/or non-celiac gluten sensitivity, but ultimately I know that eliminating gluten works for me.

[Takala]

Testing for food allergies will not pick up a celiac auto immune reaction, nor a n/c gluten intolerance reaction. They are not the same thing.

I really don't understand this going on gluten supposedly for testing, and then not getting the testing, and then going off again to start with another doctor. I have had a doctor perform in an unprofessional manner when confronted with their not being on the up and up regarding my past medical history including information sent to them by my pcp, my requests for diagnosis when I was displaying severe neurological symptoms, and my actual test results, and have had them attempt to withhold said results (showing damage) and have confronted them directly face to face about this problem, but that did not ultimately influence my diet decisions. I'm not going to ever continue to make myself sick again over a year's period of time, just to have another whack- job get insurance reimbursements while chasing the "official diagnosis" bandwagon - when they already have their pre-conceived notions set in stone. And this was not the first doctor.... this was about the 6th or 7th in a row, who were ignoring symptoms & medical history and my observations that I could alter my symptoms with an elimination diet.

Chronic D is never a "normal" symptom, especially when combined with a chronic rash. It can lead to malnutrition. No diagnosis should be ruled out on the basis of mere failure of a blood test in the case of celiac for children (or adults) or n/c gluten intolerance. The blood tests are just not 100% reliable. Response to diet, if the diet relieves the symptoms, is.

[Aprilelayne]

Testing for food allergies will not pick up a celiac auto immune reaction, nor a n/c gluten intolerance reaction. They are not the same thing.

Agree, we are seeing her regular ped regarding possible food allergens, apart from the gastro issues.

She is seeing the gastro to address the gastric and stool issues.

Do they cross paths? Are they inter-related? quite possible....but frankly I think eliminating any food allergen as causes is likely the next round to bring us fullcircle into the gluten discussion.

Regarding my on and off again history? I've given up on pursuing an official diagnosis for myself. I know I feel better w/o gluten for me.

But I have not and cannot remove gluten from my daughter's diet until we determine the cause of her problems. She will require an official diagnosis to be entitled to accomodations for school/daycare. she's only two right now, but I can't make demands at daycare regarding exposure until after a diagnosis is determined either. so the constant on/off/on plight many of us endure is not being pushed onto her as of yet.

[janpell]

Problem with relying on allergy tests, you miss a lot! This has been my process with myself and my son. He had loose stools until age three. His celiac testing came back negative as well as all his test for allergies. I had been playing around with elimination diets myself for the past two years and went fully gluten free one year ago. I am for the most part dairy free but can tolerate some parmesan cheese. I ended up bringing my son to an alternative medicine doctor after he gotten written off to having "toddler diarrhea" and we should limit his fruit.

He is gluten and dairy free now and we have to limit his nightshade and sugar consumption, completely avoiding raw tomatoes. We are also finding foods he can't handle right now like cinnamon or a certain preservative. Now that the diarrhea is cleared he will start to get a rash developing on his bum when he has food that he doesn't handle too well. My husband wasn't on board because our pediatrician said "everything is fine" don't worry about gluten but after it was removed he is now convinced. He is now rash free, diarrhea free, he doesn't have outbursts anymore. When we do slip up then he will have accidents and pee himself, or can't control his emotions. It is not easy to figure things out and change but you don't need someone to tell you everything is okay if you don't believe it. There are many options and because she is so young it is the perfect time to make the change. She will begin to like other things. Wheat is incredibly addictive and you have to break that cycle for her because she can't do it herself - and won't. I did it for my youngest and it was a struggle but we are there. I even got my older kids on board and husband. There are many allergy free website for cooking ideas for young ones.

[Aprilelayne]

Had our visit with the pediatrician, who because of doctor politics wouldn't run the cbc and vitamin levels. The gastro would likely end up running them again to confirm or running different things, so the ped didn't want to have my daughter poked twice or more than necessary.

Despite her steady growth chart and everything on the outside appearing well, she agrees that something is still 'off' regarding her bowels.

She did throw the caveat out there that due to her age the blood tests (IgA/TTG/etc) may still show as inconclusive but she agrees I'm likely on the right track regarding an intolerance or celiac.

Due to this, she really really encouraging me to do a gluten challenge just in case if my daughter is 'inconclusive' and I come up positive, then the pediatrician will make the call and do the diagnosis.

We are scheduled for gastro on 3/1.

Assuming a followup blood draw to recheck her vitamins and levels.

The pediatrician said if the results are still inconclusive, then the upper and lower GI scope is the next step to check for damage or cause of the chronic diarrhea.

So back on hold for now....but still moving forward.

[GottaSki]

Thanks for the update -- hold pattern is always tough -- but as you say you are still moving forward which is good.

Hang in there

[Aprilelayne]

What a weekend!

 

This is all likely a stomach bug or something, but notating it since we are seeing the gastro so soon. Plus the issue of reflux returning possibly:

 

On Thursday I got called to pull her out of daycare due to extreme diarrhea. Three sponge bathes and school and four outfits within five hours. 

 

No fever or distress, just watery bowels....so she was allowed to return the next day assuming it was nothing contagious.

 

Friday she made it until 4pm, and we got the call to pick her up again.  Bowels are complete liquid and acidity. The smell was beyond foul, but she was still in awesome spirits.

 

Saturday morning she woke us both up to vomit and diarrhea in her bed.  Then just two bad diapers.

Dehydration started in, but I started her on diluted gatorade. She wasn't eating much at this point either.

Sunday same, vomit in the bed and diapers still yucky.

The sores on her bottom at this point were very bad. She just cried even with just the baby washcloth and water to clean her up.  She ended up having two baths on Sunday for cleaning. Then naked time to dry out.

 

Monday - more vomit and diarrhea. I took her into the doctor mostly due to the sores on her bum.  It was an convenience visit so it wasn't our normal pediatrician.  No record of any norovirus or rotovirus (vaccinated) in the area so the doctor was concerned.

(weight loss 2.4lbs  between Wednesday-Monday)

 

I turned in the stool samples late yesterday.  Parasite check again, and giardia?

 

just posting for my reference. 

ten days until the gastro followup appt.

[ravenwoodglass]

What a weekend!

 

This is all likely a stomach bug or something, but notating it since we are seeing the gastro so soon. Plus the issue of reflux returning possibly:

 

On Thursday I got called to pull her out of daycare due to extreme diarrhea. Three sponge bathes and school and four outfits within five hours. 

 

No fever or distress, just watery bowels....so she was allowed to return the next day assuming it was nothing contagious.

 

Friday she made it until 4pm, and we got the call to pick her up again.  Bowels are complete liquid and acidity. The smell was beyond foul, but she was still in awesome spirits.

 

Saturday morning she woke us both up to vomit and diarrhea in her bed.  Then just two bad diapers.

Dehydration started in, but I started her on diluted gatorade. She wasn't eating much at this point either.

Sunday same, vomit in the bed and diapers still yucky.

The sores on her bottom at this point were very bad. She just cried even with just the baby washcloth and water to clean her up.  She ended up having two baths on Sunday for cleaning. Then naked time to dry out.

 

Monday - more vomit and diarrhea. I took her into the doctor mostly due to the sores on her bum.  It was an convenience visit so it wasn't our normal pediatrician.  No record of any norovirus or rotovirus (vaccinated) in the area so the doctor was concerned.

(weight loss 2.4lbs  between Wednesday-Monday)

 

I turned in the stool samples late yesterday.  Parasite check again, and giardia?

 

just posting for my reference. 

ten days until the gastro followup appt.

That is a lot of weight to lose for a little one in so short a time. Can you call the gastro and see if she can be seen sooner? Maybe your ped could pull some strings?

[Aprilelayne]

Giardia and parasite tests all came back negative.

back to the category of 'unknown'

 

She has improved back to her version of normal.

 

No vomit this morning.  I had considered giving her  prevacid last night if I noticed anything, so I'm paying close attention if I need to resume her reflux meds.

 

Its likely a generic stomach bug, I myself ended up in serious abdominal pain yesterday and severe diarrhea as well.  Her's is on day6, but I feel better today.  Don't know if they are associated at all, if its the same then she has a higher pain threshold because I was doubled over and catching my breath from stabbing pains.  Mine was like an intense IBS flare where I barely make it to the restroom in time.

 

I asked for the lab results to be sent to the gastro since we are going next week.  I also asked for them to be sent directly, but they won't this time without a signature on something. So I have to pick them up in person for my own records, but I will do so today or tomorrow. 

 

she's in good spirits and her bum looks better already, Her appetite returned yesterday but she accidentally ate some cheese at school (it was a cheesy covering on the chicken, they accidentally didn't pull the chicken aside for her before adding the sauce) so we may see some side effects today if she ate a significant amount.

[Aprilelayne]

Honestly next Friday is likely the soonest we would get in anyway.

 

I checked her weight this morning at home and she maintained for the last 24hours, and she is not dehydrated anymore. Daycare said she had several trips to the potty (100% potty yesterday!!) and had one bowel movement into the potty!! They were awesome and snuck a peek for my food/daily log and said its still pretty bad at a level 2 (out of my 1-10 ranking) for liquidity.

[Aprilelayne]

and this morning its back!?

 

-vomit and diarrhea

 

I can understand the rationale that her reflux has returned, she's only vomiting after laying down or sleeping.  She's burping more often lately which is our only daytime symptom I've caught.

 

But the diarrhea?  If it was a stomach bug, it would be gone. Her samples were just taken on Tuesday, a week ago tomorrow. She resumed back to her normal for Friday and through the weekend.

 

Nothing jumps out at me from yesterdays' food intake....again we don't know if its gastro related at all anyway.

We do know its not a parasite or bacterial infection.

 

Quick summary off the top of my head of yesterday:

-dry cheerios

-6oz almond milk
-maple and brown sugar oatmeal (made w/ water)
-grapes

-teddy grahams

-chicken strip (1)
-apple and sweet potato squeezable fruit

-small sugar cookie

-4oz apple juice w/ probiotic

 

-meatloaf (1-2oz?) - homemade
-mashed potatoes (small amount of dairy)
 

-6oz almond milk

 

*She is not currently gluten-free since we are still very early in the dx process due to her age.

*She is dairy free, not casein free.

 

Next gastro appt is this Friday.

But if the diarrhea stays, she will have to return to her ped.

[ravenwoodglass]

The one thing that does jump out at me from her food intake is that is is quite gluten heavy. I hope they figure it out soon but if they don't it sure won't hurt to have her on the gluten-free diet for a couple months. The only thing that will impact is testing for celiac which at her age has a high chance of a false negative anyway. But I am sure you know that already.

[Aprilelayne]

Agree!

 

Which is also why I am wanting to have more confidence in if its all related to gluten before removing it. Transitioning her away from gluten at 2yrs old is not going to be fun. 

 

My gut and what is going on right now makes me want to actually push for the endoscope. Not only for the celiac evaluations but also for the reflux damage if any.

[nvsmom]

Agree!

 

Which is also why I am wanting to have more confidence in if its all related to gluten before removing it. Transitioning her away from gluten at 2yrs old is not going to be fun. 

 

Just remember that it may be easier to transition out gluten at age 2 than it will be in a fe more years

[mommida]

For  a 2 year old removing gluten follow this law.  You must have gluten free snacks and treats with you at all times!  Children are offered candy all the time.  Explain "that will make your tummy hurt" but mommy has your safe snacks here.  You pull out 2 safe snacks and let your child choose.  Being 2 is about becoming more independant, let your little one have this control over safe snack choice.  

[Aprilelayne]

For  a 2 year old removing gluten follow this law.  You must have gluten free snacks and treats with you at all times!  Children are offered candy all the time.  Explain "that will make your tummy hurt" but mommy has your safe snacks here.  You pull out 2 safe snacks and let your child choose.  Being 2 is about becoming more independant, let your little one have this control over safe snack choice.  

Awesome advise!!

 

She's a stubborn one, so whatever foods I do end up having to remove from her diet will be quite the battle, but will be done for her own health. 

 

If it turns out to be gluten related, my concern is more about my husband's understanding and the amount of safeguards that will need to be in place to allow the house to still have gluten.  They often enjoy their 'snack' time together, which I've managed to switch them to popcorn or nuts, but when I'm not there I have a suspicion that its more cookies and chips. ha.

 

****

She ate minimal yesterday, refusing even her almond milk.

At most she ate 4 pieces of pineapple bits (daycare) and they counted 8 saltines.

 

No more diarrhea or signs of reflux during the day and she survived the night without another blowout as well.