Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

18M Old - With Genetics Against Her


  • Please log in to reply

137 replies to this topic

#31 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 14 September 2012 - 12:59 PM

I broke down and called today to prod the GI office along.

No news yet, the blood and xray were last week and the stools were on Monday.

I'm just cranky, I've had a rough 48hours for myself with my IBS and I was just hoping that we'd hear something.

Instead I got the standard 'oh, no news is good news' line from the operator.
I probably was snippy and said 'no, this is initial paperwork and consult and a response is necessary. No response is bad business.'

sigh.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


Celiac.com Sponsor:

#32 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 14 September 2012 - 05:04 PM

Got a phone call around 6pm tonight, it was hard to catch it all while cooking and dealing with the little one.

Celiac tests (the two they did run) were negative
Vitamin d low, need increase in multivitamin
Glucose elevated but not a concern because she didn't fast for the exam?
Kidney function? Above normal...make sure to keep hydrated. Try to increase fluid intake
Antibodies? Her immune system? She said she's off the charts?? Means she has a 'healthy inmunity'

Still waiting on stool results but as of right now there isn't anything concerning.

Sigh
Tell that to the kid who has diarrhea or loose stools three times a day?!?

I did ask that they fax me the results for my records so I can try and get real info instead of verbals from the nurse.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#33 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,791 posts
 

Posted 15 September 2012 - 03:01 AM

Do keep in mind that IBS is a symptom not a diagnosis. It would be a good idea for both of you to do a gluten free trial for at least a couple months after all testing for celiac is done. False negatives are all too common. I hope you both get some relief soon.
  • 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)

#34 nora_n

 
nora_n

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,490 posts
 

Posted 15 September 2012 - 09:17 AM

can you elaborate on "antibodies off the charts"

also which celiac tests were run

Note there is also something called non-celiac gluten sensitivity, which acts exactly like celiac
  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#35 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 18 September 2012 - 10:53 AM

okay, finally got the fax with 99% of the info:

bear with me, I'll give everything I have to see if anyone else can see any issues to monitor since this may simply be a baseline record since the GI office finds nothing note-worthy.

Vitamin D:25 (30-74)
IgA: 51 (14-106 mg/dl)
IgE: 388.5 (<60 IU/ML) H
TTG IgA: 0.6 (see below u/ml) -- ??? nothing else about range on this one?

C-Reactive Protein: <0.5 (<0.8 mg/dl)
Fecal Fat: neutral fat - normal
split fat - increased
Sedimentation Rate: 3 (0-20 mm/hour)
WBC: 12.6 (6.0-17.5 k/ul)
RBC: 4.73 (3.70-5.30 m/ul)
hemoglobin: 12.3 (10.5-13.5 g/dl)
hematocrit: 36.1 (33.0-40.0%)
MCV: 76.3 (70-87.0 tl)
MCH: 26.0 (23.0-31.0 PG)
Neutrophils: 26 (20-60%)
Lymphocytes: 64 (35-75%)
Monocytes: 8 (4-13%)
Eosinophils: 2 (0-7%)
Basophils: 0 (0-2%)
Platelet count: 438 (130-580 k/ul)
RDW: 14.7 (11.0-15.0%)

Metabolic Panel - I'm only listing those with a marker on them:
BUN 22 (4-18 MG/DL) H
Glucose: 104 (65-100 MG/DL) H
Calculated Bun/Creat: 55 (6-40) H

Fecal:
Pancreatic elast: 424 (>=201 ug/g)

This is what I was told verbally, about the increased glucose due to not fasting and the high urine functions due to the diarrhea. I was explained the increase fecal split fats is due to the rapid transit.

I've never had to make sense of this much detail before, so if there is something I should be paying attention to, please let me know.


eta: I did find some info on the RDW rate:
a normal MCV reading in combination with normal RDW may represent a chronic disorder, and normal MCV combined with high RDW can signify a B12 deficiency.
(her RDW is 14.7,on the end of the normal which is 11-15%)
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#36 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 18 September 2012 - 11:24 AM

Do keep in mind that IBS is a symptom not a diagnosis. It would be a good idea for both of you to do a gluten free trial for at least a couple months after all testing for celiac is done. False negatives are all too common. I hope you both get some relief soon.

I did a gluten-free trial for myself March-July and felt AMAZING.
Resumed gluten eating in August and have felt off and struggled ever since, I'm back on it for potential testing.
Granted after last week's struggles (I had two near accidents at work of not getting to the restroom in time) I've gone back to low-carb for my primary day to day meals but to have a gluten item at dinner with the family instead of opting out. I'll have a flour tortilla instead of my usual corn and such. I think last week's extremes were due to my extreme glutening.

can you elaborate on "antibodies off the charts"also which celiac tests were runNote there is also something called non-celiac gluten sensitivity, which acts exactly like celiac


Now that I've read up on some of them, I think she was referring to the IgE results.
she has exzema and asthma and then whatever was causing her extreme diarrhea and everything the two weeks prior to the testing all accumulated into a high antibodies showing that she's fighting several things?
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#37 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 18 September 2012 - 02:00 PM

That low d will make her feel pretty tired, and inhibit her from absorbing and using vitamins, minerals, and hormones. Supplament!

And low d is common with Celiac and hypothyroidism.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#38 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 20 September 2012 - 05:03 AM

Thanks for your feedback, I wish there was something blaringly obvious for her GI or us to know what is the issue.

Since our GI appt I've been watching my daughter more closely and have noticed that she is still struggling with reflux. She's quiet about it and swallows it back down, so we've never really had evidence of it since she was about 10months old. Since we've been more attentive to look for it, her brother and I have been keeping track and notice it at least twice a day (which is really limited to only about 4hours of contact due to school and work).

Both doctors, the ped and the GI, have suggested going with the Prevacid OTC and just putting the granules into her foods because she is really maxing out on the zantac. The problem I'm facing with the granules is the same we are having with the probiotics :(

There are days I can't get her to eat anything that I can put it in.
I've gotten more vegetables in her at school mostly because of the novelty of the squeezable baby fruit/veggie mixes. She's eating veggies so I can't complain!

That leaves me only applesauce and/or baby rice cereal (her favorite) to incorporate her probiotics into and possibly adding in the Prevacid as well?

We are currently using the Florastor Kids powder.

I've been putting the fiber into her soymilk.

She has improved from her severe diarrhea diapers, but just this week two new teachers started at her daycare and both wanted to have her picked up because of diarrhea. The director explained that it was my daughter's normal and she isn't sick, that her diapers are ALWAYS like that. So obviously she still is not showing the same diapers as most kids her age.

I'm not here trying or focusing on her being celiac, I'll be grateful if she never shows up as celiac. I don't want her to plagued with anything like I did growing up. I really am hoping there is nothing more than an immature gut, but at the same time I want to make sure she isn't ignored or suffering unnecessarily if there is something wrong.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#39 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 20 September 2012 - 05:56 AM

That low d will make her feel pretty tired, and inhibit her from absorbing and using vitamins, minerals, and hormones. Supplament!

And low d is common with Celiac and hypothyroidism.


She is on a liquid multi-vitamin drop, has been since she was 6months old due to bfing and my limited diet.
I need to look into a different one I guess.

My non-professional, self-researcher review of the results still give me hesitations:
-low vitamin D
-low B12
-increased kidney output
-stool sample proved 'fast transit' in gut.
-high fact content in stools

she still shows signs of something, it may not be auto-immune as in full Celiac, but something is still off.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#40 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,791 posts
 

Posted 20 September 2012 - 06:11 AM

We are currently using the Florastor Kids powder.

I've been putting the fiber into her soymilk.

The Florastor contains both lactose and traces of soy.
Have you tried eliminating soy and all dairy with her? There are quite a few of us who are intolerant to it. In myself it causes stomach pain and reflux but don't know if that may be the case with her.
  • 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)

#41 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 20 September 2012 - 06:56 AM

The Florastor contains both lactose and traces of soy.
Have you tried eliminating soy and all dairy with her? There are quite a few of us who are intolerant to it. In myself it causes stomach pain and reflux but don't know if that may be the case with her.


hmm...I didn't realize there was lactose traces in it. Her GI gave us samples, despite knowing she's lactose intolerant??

She is lactose and dairy free (but not casein free) already.
I guess there wouldn't be a harm in trying her with almond or rice milk instead of the soy.

I've left a message with the ped's nurse to see if we should bump up the zantac, so when she calls back I may ask about the rice or almond milk substitutes.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#42 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,791 posts
 

Posted 20 September 2012 - 07:13 AM

hmm...I didn't realize there was lactose traces in it. Her GI gave us samples, despite knowing she's lactose intolerant??

She is lactose and dairy free (but not casein free) already.
I guess there wouldn't be a harm in trying her with almond or rice milk instead of the soy.

I've left a message with the ped's nurse to see if we should bump up the zantac, so when she calls back I may ask about the rice or almond milk substitutes.


It contains traces of soy but lactose is one of the actual ingredients. I think you might be better off asking here in the products section for suggestions on almond or rice milk. There is also hemp milk which is high in easily digestable protein. As far as rice milk is concerned do stay away from Rice Dream. If you live near a Wegmans their rice milk is pretty good and doesn't use barley in the processing like Rice Dream does. Pacific milks are also pretty good but there are others. I could be wrong but you may see a good improvement once you drop the soy. You may also want to try casien free for a bit as well. Personally I would do that before upping her dose of a med, but that is just my humble opinion.
  • 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)

#43 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 25 September 2012 - 05:40 AM

Thanks for the info on the probiotics, I should be looking into a new one anyway, I'm not sure its helping at all yet (I know its really early though)

I still need to figure out what she is reacting to though, whether its celiac, food intolerances, or whatnot...but she's having severe gas pains that are waking her up.

At least that is the only thing I can think of. She has woken up two nights in row screaming for me and when I get to her room she says 'poop' and holds her back (like her kidney areas) I change her diaper and its just pee. We rock and hug to get her back to sleep and she is just tooting like crazy.

I thought she was progressing with her food choices this past week, but more food she eats, the more dramatic the poop explosions and gas. We had an emergency 7am bath on Sunday morning again.

Our next appt is October 15th, but I need to call the GI to at least write a note for the daycare. They are getting nervous about their audit and someone classifying her as having 'diarrhea' and making me pick her up. That is a big deal and indicator for me and the doctors that she obviously is different than her peers enough that daycare (who deal with kids diapers fulltime) finds it 'off.'
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#44 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 27 September 2012 - 08:26 AM

I lost it last night and had a crying moment out of frustration.

Something is off.

We are back to square one, she had six blowouts in the last 48hours, two bed changes, five outfits.....her bowels are pure liquid right now. She's chugging down water which is good and it eating well enough (of her limited picky likes) but I'm just waiting for the phone to ring for daycare to refuse her anytime now.

I have no news, and basically no idea where the gastro goes from here. The office didn't even want to do a follow-up appointment since her results didn't give them anything 'of concern' !?!
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#45 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 27 September 2012 - 09:21 AM

I just read this thread -- how awful for your daughter and you. Constant diarrhea is not any child's "normal" and is something to be concerned about.

Your daughter did not have a full celiac blood panel. DGP (Deamidated Gliadin Peptide) IgA/IgG are often the first positive tests in children.

At the time of my celiac diagnosis at 43, my 18 month old grandson had never had a solid stool. They had already removed other foods corn, dairy, etc. at the advice of their pediatrician - so my daughter removed gluten -- within three days his stools were solid for the first time and have remained so - he is 5 now. My children have tested ALL negative for Celiac Disease, yet have all had various serious health issues improve once gluten-free. Since I have two copies of one Celiac gene plus one other gene - all of my kids carry at least one copy. My own celiac antibody tests were only slightly/weakly positive at 43. Not everyone with Celiac Disease tests positive.

I'd suggest having your pediatrician order the rest of the celiac blood tests then remove all gluten for at least three months.

I read the thread quickly - not clear if you are still trying to have endoscopy. If you are going to have an endo - hold off on removing gluten until the day the test is complete.

I hope you find answers for your daughter and yourself very soon.

Good Luck!
  • 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 :)





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: