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18M Old - With Genetics Against Her


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137 replies to this topic

#46 Aprilelayne

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Posted 27 September 2012 - 09:40 AM

That is actually a very good idea. I'm going to call her peds office to see if she will order the other tests so we could have results before the next gastro appt.

Either way, I need one of these doctors to write her a statement to allow the daycare to keep her. If she's so 'normal' then she has to be in daycare. If I use anymore leave at work I'll need to consider FMLA while we get things situated if school won't accept her as she is now. And she cannot continue like this.

Her reflux is still there, so the endoscope should be on the table but the gastro really did initial testing and was going to base our treatment or testing plans based on those results.

I feel like I'm just whining and complaining, I appreciate anyone who reads along, I'm not sure its going to end up being anything gluten related, but this is the only place that I can basically have a poop journal.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


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#47 GottaSki

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Posted 27 September 2012 - 09:56 AM

Careful with Reflux meds to - I'm not saying to not use them - just my son was on and off them for seven years with no improvement - removed gluten - huge improvement.

I am also not saying you or your daughter have a problem with gluten - only that with your symptoms, should the tests all be negative and "normal" I'd strongly suggest removing gluten, it just might be the answer.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#48 Aprilelayne

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Posted 28 September 2012 - 10:42 AM

Last night's diaper was slightly better but was full of undigested material :(

I'm going to try and restrict her soymilk this weekend to see if it makes a difference in the upcoming week in her belly hardness.

She ate sliced apples at school yesterday!! That is a big texture milestone for her.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#49 ravenwoodglass

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Posted 28 September 2012 - 12:21 PM

Last night's diaper was slightly better but was full of undigested material :(

I'm going to try and restrict her soymilk this weekend to see if it makes a difference in the upcoming week in her belly hardness.

She ate sliced apples at school yesterday!! That is a big texture milestone for her.


To see if soy is an issue it is best to eliminate it completely for a bit and see if she improves or if issues get worse when you add it back in.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#50 Aprilelayne

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Posted 01 October 2012 - 04:48 AM

To see if soy is an issue it is best to eliminate it completely for a bit and see if she improves or if issues get worse when you add it back in.


We are transitioning her to almond milk for now, so by the end of the week she will be w/o soy.

She has developed a bad diaper rash this weekend, but I'm starting to connect that to strawberries. One of her foods that she actually tried and liked, but I'm removing them for now, I know they are a known food allergen for quite a few little ones.

My husband finally is getting that its not just 'something she will grow out of,' he's starting to pay more attention to her as well and realized how bloated her belly is and the amount of burping and spitup she's having. She had quite a bit of naked time this weekend due to the diaper situation and he finally noticed that her belly is disproportionate to how little she eats and that when its large she burbs quite a bit.

14more days until the gastro and I talk again and see what else there is to test for or scope for the reflux.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#51 Aprilelayne

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Posted 08 October 2012 - 05:41 AM

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!
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#52 mommida

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Posted 08 October 2012 - 06:45 AM

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.
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#53 Aprilelayne

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Posted 19 October 2012 - 05:45 AM

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.'
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#54 frieze

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Posted 19 October 2012 - 07:54 AM

http://www.aaaai.org...sinophilia.aspx
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#55 nvsmom

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Posted 19 October 2012 - 09:10 AM

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.
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#56 Aprilelayne

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Posted 22 October 2012 - 05:15 AM

http://www.aaaai.org/ask-the-expert/Evaluation-of-elevated-IgE-and-eosinophilia.aspx


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?
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#57 Aprilelayne

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Posted 22 October 2012 - 05:31 AM

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.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#58 GottaSki

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Posted 22 October 2012 - 07:47 AM

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 :angry:

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

Good luck to you both :)
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#59 frieze

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Posted 22 October 2012 - 02:16 PM

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...
  • 0

#60 Aprilelayne

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Posted 30 January 2013 - 09:41 AM

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.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed



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