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18M Old - With Genetics Against Her


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137 replies to this topic

#106 Aprilelayne

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Posted 26 March 2013 - 12:20 PM

I hope so, I explained when I called for an appointment that I was having "complications from my IBS and tired of feeling like crap."

 

I've been really cranky and down for the last month, I am not myself...so if anything I need to do something about it instead of just whining about feeling like crap more often than not.

 

Doesn't help that I'm in a bad flare right now. I can't stay out of the bathroom or stand upright w/o pain.  Probably stress induced, but still...it is what was the straw that broke this camel to finally call and get an appointment.


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(Texas)

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

                                 3/2013 - soy allergy confirmed


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#107 Aprilelayne

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Posted 27 March 2013 - 04:30 PM

3/27 - dinner of peaches, pineapple and biscuit.
(Biscuit is soy free but not wheat free)
flushed cheeks within 10 minutes of eating. *picture taken

Complaints before and after of tummy hurting. Still need to verify what she ate for lunch other than rice.

Eta:diarrhea within 20min.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#108 Aprilelayne

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Posted 01 April 2013 - 04:54 AM

updated notes:

-diarrhea reaction again to peaches??

-BMs becoming more solid!!! :) but consistently yellow, pale

-increased complaints of 'belly hurting' in afternoon and evenings.  Daycare remarked complaints about 45min after eating.

 

 

A kudos to the daycare, they have officially updated their 'allergy' alerts to include her Soy allergy even without her official statement!!  I've printed up an allergy info page about the other names of SOY in products to look for, they've added it to their pantry doors! I'm just proud of them being cooperative with an allergy other than nuts!

 

And I head to my appt this morning to start discussion on my own issues.  I'm going in with a 'I'm not going to beat around the bush' attitude about pushing for celiac and nutrient testing.  Who knows what will pan out, but I'm going in strong.  (its a new doctor to me, so I have no idea what her personality is, or how cooperative she is.)


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#109 Aprilelayne

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Posted 01 April 2013 - 06:49 AM

holy moly...it worked!

 

The doctor listened, and she agreed if anything to consider myself NCGI based on anecdotal information alone.

But agreed to the testing for 'official' purposes and to help my daughter's gastro.

 

Ordered:

CBC w/ nutrients

Vit D/B tests

'Celiac Panel' that includes four tests, she wasn't sure which ones.

'AGA IgA'

'TTG IgA'   <---she ordered these two specifically from my list because she wasn't sure what was in their standard panel.

 

Five vials, possibly a week for response.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#110 shadowicewolf

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Posted 01 April 2013 - 09:34 AM

Those are two of them :) its a start at least.


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#111 Aprilelayne

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Posted 02 April 2013 - 04:55 AM

Yep! She clarified that she ran those two separately because they didn't appear to be in their office's official 'celiac panel.'

If anything we've doubled up on a test or two somewhere.

 

I have to remind myself that I know some will be skewed.

My BVitamins and likely my D will be skewed since I've religiously taken supplements for both for nearly three years. I stopped last week when I got the appointment.

 

Again, who knows if anything officially comes up. Trying not to get my hopes up either way.

If it comes up as positive, then its good for my daughter's treatment plan going forward.

If its positive, she and I would likely go forward as the gluten-free half of the house.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#112 Aprilelayne

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Posted 03 April 2013 - 06:57 AM

4/2 - Zantac bumped up to 5mls 2xday.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#113 gfreemarketingguru

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Posted 03 April 2013 - 07:52 PM

Oh April, what an ordeal. Doctors are not perfect & celiac diagnosis is for some reason a mystery. In Aug, my 22 month old had been sick for 2 months, in & out of the hospital...gas, bloating, vomitting, diarrhea, constipation, dehydration & was failing to thrive (out of nowhere). Peds GI specialist said did VIRUS not celiac, went dairy & soy free, said lots of calories and carbs. He kept getting sicker. I found this sight (wanted to try anything) took him off gluten for 1 day... next day his improvement was DRAMATIC, got up to play for first time in 2 wks & had his first normal bowel movement in 2

months. GI Doc saw us within days & confirmed celiac...THEY MISSED THE DIAGNOSIS! Apparently little ones rebound very quickly. Always follow up with a doc, but TRY gluten-free for a day or two...one day wont ruin their tests...and see if you notice a change. Moms instincts count for something
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#114 frieze

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Posted 04 April 2013 - 10:25 PM

hmm yellow feces, makes me think lac of bile salts....gallbladder issue.  Good luck

updated notes:

-diarrhea reaction again to peaches??

-BMs becoming more solid!!! :) but consistently yellow, pale

-increased complaints of 'belly hurting' in afternoon and evenings.  Daycare remarked complaints about 45min after eating.

 

 

A kudos to the daycare, they have officially updated their 'allergy' alerts to include her Soy allergy even without her official statement!!  I've printed up an allergy info page about the other names of SOY in products to look for, they've added it to their pantry doors! I'm just proud of them being cooperative with an allergy other than nuts!

 

And I head to my appt this morning to start discussion on my own issues.  I'm going in with a 'I'm not going to beat around the bush' attitude about pushing for celiac and nutrient testing.  Who knows what will pan out, but I'm going in strong.  (its a new doctor to me, so I have no idea what her personality is, or how cooperative she is.)


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#115 Aprilelayne

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Posted 15 April 2013 - 06:50 AM

Real quick....got my results in hand, as expected for myself with no answers.

*I knew going in so suddenly that my results would be skewed due to my prolonged use of supplements and being gluten-lite for almost a full year.

 

The 'celiac panel' was passed with flying colors.

Gliadin IgA 3.96 (0-15)

Gliadin IgG 2.68 (0-15)

Ttg IgA 1.25 (0-15)

Ttg IgG 1.46 (0-15)

Endomysial IgA <1.10 --"within range" with expected range of '<1.10'

(so I assume I'm under the expected range or right at it)

 

I was considered normal on the phone for the following, but they are clearly right on the cusp. Had I not been on supplements they would have been below norm.

B12 - 204 (200-982)

RBC - 3.92 (3.80 - 5.10)

HGB - 11.8 (11.5-15.5)

and my Lymphocytes were specifically marked as 'high' at 51.0 (19-48.0)

 

somehow the VitD wasn't done or not included.  I thought we discussed it being done, I'll have to go back over my notes.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#116 Aprilelayne

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Posted 15 April 2013 - 06:53 AM

Rough weekend again.

Little one has started up her random vomitting again. Friday to the point of having to be picked up from school.

Severe liquid diarrhea throughout the weekend.

Nominal appetite all weekend.

Vomit on Sunday evening of water.

 

Adding insult to injury, I'm having my random nausea day again already.

mysterious hives on my abdomen.  *still trying to figure out what I would be reacting to, either skin wise or food intake. Hives is a first for me other than allergic reactions to medications.

Severe diarrhea myself.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#117 GottaSki

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Posted 15 April 2013 - 07:42 AM

When you go back to test Vit D -- Add in:

 

B1, B2, B6, K, Iron, Ferritin, Copper and Zinc

 

I think you already had -- but make sure you had CMP and CBC as well.

 

Hope you are feeling better soon!


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-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 :)


#118 frieze

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Posted 15 April 2013 - 10:58 AM

that B12 is extremely low, especially considering you are supplementing! it should be over 500!  Many labs don't do Vit D testing, but send it out, maybe in "the pipeline".

Real quick....got my results in hand, as expected for myself with no answers.

*I knew going in so suddenly that my results would be skewed due to my prolonged use of supplements and being gluten-lite for almost a full year.

 

The 'celiac panel' was passed with flying colors.

Gliadin IgA 3.96 (0-15)

Gliadin IgG 2.68 (0-15)

Ttg IgA 1.25 (0-15)

Ttg IgG 1.46 (0-15)

Endomysial IgA <1.10 --"within range" with expected range of '<1.10'

(so I assume I'm under the expected range or right at it)

 

I was considered normal on the phone for the following, but they are clearly right on the cusp. Had I not been on supplements they would have been below norm.

B12 - 204 (200-982)

RBC - 3.92 (3.80 - 5.10)

HGB - 11.8 (11.5-15.5)

and my Lymphocytes were specifically marked as 'high' at 51.0 (19-48.0)

 

somehow the VitD wasn't done or not included.  I thought we discussed it being done, I'll have to go back over my notes.


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#119 Aprilelayne

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Posted 15 April 2013 - 11:06 AM

Right? I currently 800mg of B, so I was really surprised with how low it was.

but according to the 'range' I'm normal, so the doc didn't see it.

 

I left a message with the nurse to check on the VitD, thinking that it had been ordered. If not, I need it if anything for a baseline.

 

for whatever it is that I am plagued with, since its not celiac as in auto-immune.

 

So my question is, does NCGI also cause the nutrient deficiences?


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#120 frieze

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Posted 15 April 2013 - 11:14 AM

is that 800 mcg of Vit B12? If so that is a way small amount.  especially if mixed in with other Bs.  Try at least 2000 mcg, 5000 would be better for a little while.

Right? I currently 800mg of B, so I was really surprised with how low it was.

but according to the 'range' I'm normal, so the doc didn't see it.

 

I left a message with the nurse to check on the VitD, thinking that it had been ordered. If not, I need it if anything for a baseline.

 

for whatever it is that I am plagued with, since its not celiac as in auto-immune.

 

So my question is, does NCGI also cause the nutrient deficiences?


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