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

#91 stanleymonkey

 
stanleymonkey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 19 March 2013 - 07:12 PM

We were told me eldest could not possibly have any issue with gluten because she was following her growth curve, she wasnaround the 25 th percentile for height and weight, both her dad and I are on the shorter side so they said no issue, gluten free she grew 3 inches in 3 months! And hit the 50 th percentile.
Growing doesn't mean damage isn't being done. And as for the allergies, my daughter had anaphylactic allergies to milk and eggs, gluten free they disappeared. If she gets glutened she'll get hives from milk. Our allergist said her immune system was so taxed with the gluten reactions, it just basically freaked out.
I'd try gluten free as a trial, and I am sure her allergies will ease a little.
  • 2

Celiac.com Sponsor:

#92 Psyche

 
Psyche

    New Community Member

  • Advanced Members
  • Pip
  • 19 posts
 

Posted 19 March 2013 - 08:20 PM

I am catching up.

 

Sunlight has done nothing to help K's Vit D deficiency. He works outside often (has the 'scientist tan') and his numbers have kept going down.


  • 0

Something witty this way comes...


#93 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 20 March 2013 - 03:46 AM

Screening out soy is worse, IMO, than gluten. When my son was an infant he seemed to have issues with milk and soy formulas so I dropped both from my diet.

Painful.

I feel for you, but I'm glad you're getting somewhere.
  • 1
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!

#94 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 20 March 2013 - 08:15 AM

Screening out soy is worse, IMO, than gluten. When my son was an infant he seemed to have issues with milk and soy formulas so I dropped both from my diet.

 

Thank you!!

 

My mother and husband both were like 'oh thats great, soy is an easy fix, no more soy milk.' Neither of them realized that I switched her off of soy six months ago.

 

To prove my point I told them both to blindly go and grab any box from the pantry.

Husband's random item had a 'contains wheat, soy, and milk'

Mother's random item had 'contains: soy, wheat'

 

Neither of them had any idea how prominent soy is in any packaged food item.  I myself didn't realize until the last two grocery trips when I started really reading labels on everything.

 

We eat whole foods and clean for dinner, but snacks and treats are typically available in the pantry.

 

anyone realize that even the gummy fruit snacks have soy leticin? ugh.

 

I ended up making some gluten-free, DF muffins for the house for everyone snack on or have for breakfast.


  • 1

(Texas)

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

                                 3/2013 - soy allergy confirmed


#95 Psyche

 
Psyche

    New Community Member

  • Advanced Members
  • Pip
  • 19 posts
 

Posted 20 March 2013 - 10:12 AM

Soy is obnoxiously everywhere. I have not trusted fast food meat for years when I heard they started adding it to their 'beef'. My mother is incredibly allergic to soy (and a host of other things) so I have always been very cautious about soy.


I can definitely see how snacks would be a problem.

 

K is so overwhelmed by labels. We ended up putting some apps on our phones to help him figure things out.


  • 0

Something witty this way comes...


#96 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 20 March 2013 - 11:25 AM

Thank you!!

My mother and husband both were like 'oh thats great, soy is an easy fix, no more soy milk.' Neither of them realized that I switched her off of soy six months ago.

To prove my point I told them both to blindly go and grab any box from the pantry.
Husband's random item had a 'contains wheat, soy, and milk'
Mother's random item had 'contains: soy, wheat'

Neither of them had any idea how prominent soy is in any packaged food item. I myself didn't realize until the last two grocery trips when I started really reading labels on everything.

We eat whole foods and clean for dinner, but snacks and treats are typically available in the pantry.

anyone realize that even the gummy fruit snacks have soy leticin? ugh.

I ended up making some gluten-free, DF muffins for the house for everyone snack on or have for breakfast.


Yep. I finally gave up buying packaged stuff at that point. I did find some cookies that were sf/df...of course they weren't gluten-free but that wasn't an issue at the time. There are so many more options now in the specialty market; however, mainstream foods are still a nightmare (I notice soy all the time when I screen for gluten).

Ironically I found French baguettes that were sf/df...that was my treat. If I'd only known....rolling my eyes.
  • 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!

#97 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 21 March 2013 - 05:00 AM

Its so ironic, I did WW for several years and gravitate towards food items with 'added fiber' and 'protein' type bars, but come to find out that the added protein is typically added soy!!?

 

I guess my baking and cooking skills will be back in full use! Luckily I enjoy baking and experimenting.

 

Hubs didn't comment on a carb-free dinner last night. ha.He looked around the table, but didn't ask.

I normally would have made biscuits or rolls to go with the fish and vegetables, but last night we all ate the same foods.

Grilled trout, mashed potatoes and sauteed peppers and mushrooms.

 

He ended up making himself some popcorn after dinner for a snack since he wasn't full.

 

Its a good first step for him.


  • 1

(Texas)

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

                                 3/2013 - soy allergy confirmed


#98 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 21 March 2013 - 06:40 AM

Its so ironic, I did WW for several years and gravitate towards food items with 'added fiber' and 'protein' type bars, but come to find out that the added protein is typically added soy!!?

I guess my baking and cooking skills will be back in full use! Luckily I enjoy baking and experimenting.

Hubs didn't comment on a carb-free dinner last night. ha.He looked around the table, but didn't ask.
I normally would have made biscuits or rolls to go with the fish and vegetables, but last night we all ate the same foods.
Grilled trout, mashed potatoes and sauteed peppers and mushrooms.

He ended up making himself some popcorn after dinner for a snack since he wasn't full.

Its a good first step for him.


We didn't always have bread at dinner - because I was (still am) picky about my bread. It needs to be very good to go on my table; however, I did feel like there was "empty space" at special events or when my FIL came to dinner.

We got over it.

And mashed potatoes are pretty carby, tell him to have two helpings. Or not...he'll get used to it :).

You'll probably find a substitute you're ok with. Off the top I don't know of a soy free ready made bread/roll; however, Living Without magazine has tons of recipes and each is highly customizable. You'd have luck picking a roll recipe and making a bunch up, freezing, and baking a few per meal.
  • 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!

#99 stanleymonkey

 
stanleymonkey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 257 posts
 

Posted 21 March 2013 - 07:14 AM

If you need prepackaged snacks just to keep n hand for emergencies try enjoy life, free of the top 11 allergens,
  • 0

#100 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 25 March 2013 - 07:40 AM

Weekend notes:

Most of the weekend was related to asthma complications and a low-grade fever. Lots of coughing.

 

Her movements were foul. But in the potty, when she's rushing she will use the baby potty as its quicker to get on than to use the stool to get onto the toilet.  So I had the pleasure of having to clean it out.

 

Since Thursday, with the low-grade fever, she's having four-five movements a day...not watery but her normal mush.

I joked with the hubs that she is like a 'sick cat' the way it looks and smells :(

 

Her reflux has been worse again, she is now asking for it in the early evenings before her 2nd dose of the day.  I may need to inquire if her dose needs to be increased or to try a different med.

 

On a positive note, I have to thank my stars she has an awesome grandmother (my mom.)  We visited this weekend and found a basket of food items that she bought while making the effort. She found soy free graham crackers and soy free cookies in individual  packets for her daycare to keep on hand.  very sweet effort! Plus she realizes how prominent soy is in things.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#101 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 25 March 2013 - 07:30 PM

April, I sat down and read your daughter's thread in its entirety today, which I have not done in the past because you were receiving good advice from good advisors :)   I could not believe this whole saga has been going on for seven months practically unchanged except for the eventual elimination of soy (and apparently? with that the really hard belly).  Although I keep seeing the title of your thread popping up.  You must be at your wits' end, as I am with mine having read it all.  Wouldn't it be great if you could get her pediatrician, her GI and her allergist all together in the same room talking about what is wrong with your daughter and developing a united plan of attack.  It seems that these little fiefdoms are impeding your daughter's progress rather than helping it. :unsure:

 

I do have to admit to having a headache now that I am through it all, and that is probably preventing me from synthesizing the following information.  And I don't think my head will survive a reread.  I know she has not had endoscopy with biopsy to try to figure things out and understand the reasons, although it may be time for this step.  But has she had a complete celiac panel, running both the IgA and IgG versions of all the tests after having been on a gluten diet for 8 weeks?  If the answer was yes, were all of these tests negative?  I know she has had low Vit.D and B12 which are very closely related to celiac.  Are her levels normal now they are being supplemented or are they still low?  Has she had an ultrasound exam for impacted stool -- the diarrhea often squirts around the edges of impactions?  Is she actually improved in any way from August when you first started the thread?  Have you ever had the celiac panel after being on a full gluten diet for 8 weeks?

 

Perhaps if you could set out the answers to these questions it might help us all (and certainly me :wacko: ) get our heads around the issues.


  • 2
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#102 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 26 March 2013 - 06:34 AM

Thank you for reading!! I know I've vented, whined, and complained throughout this thread.

I just don't know where else to spill all this garbage to.

 

Responding to the questions and bringing it together in one post:

 

I know she has not had endoscopy with biopsy to try to figure things out and understand the reasons, although it may be time for this step. 

Our next gastro followup is May 10. Per the gastro, if no changes or improvements by that time, we will schedule the scope.

(despite that the pediatrician’s referral in July last year was to get scoped to monitor the damage from her reflux and continued diarrhea)

 

But has she had a complete celiac panel, running both the IgA and IgG versions of all the tests after having been on a gluten diet for 8 weeks?  If the answer was yes, were all of these tests negative? 

No, she didn’t get the full panel…in October she got the IgA and TTG IgA, both were negative.  

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)

She did not get the IgG (which is why I want to push for it with the immunologist)

 

She has continued on gluten and wheat.

Her wheat allergy test came back negative (march)

 

I know she has had low Vit.D and B12 which are very closely related to celiac.  Are her levels normal now they are being supplemented or are they still low?

In October, VitD was 25 while on standard vitamins and vitaminD at 400units.  In response, we bumped it up to be consistent with vitaminD and improved vitamin for a total of 600units.

In March, her VitD dipped lower to a 19. Her gastro recommended bumping to 800units.

I’ve faithfully given 800units 5days a week and 2days a week I push it up to 1000units (based on other input here)

 

Has she had an ultrasound exam for impacted stool?

Xray in October showed no obstruction or conflict.

 

Is she actually improved in any way from August when you first started the thread? 

Incremental improvements, yes.  In October I switched her voluntarily from soy to almond milk based on this thread and noticed an immediate improvement in her belly size and gas.  The improvement was short lived.

She gets sick and has diarrhea worse than usual, like others….but her everyday average day still involves three to four bowel movements that would be classified as diarrhea.

I rely on the daycare to classify it as they have more experience comparing normal poop as my own experience is skewed with my son on the polar opposite with constipation woes (prunes and miralax everyday until he was 5) and my own personal BM patterns being less than normal.

Her reflux is getting worse.  She’s had several mornings since January where she’s vomited in bed in the early mornings.  I cannot connect it to her coughing jags (asthma) or true reflux.  She is now asking for ‘tummy medicine’ when she gets hiccups and makes the yucky face that the hiccup tastes bad.

 

Since the dx of a soy allergy three weeks ago, we are eliminating, but I think its too soon to see any improvements as of yet.  She is still exposed at daycare until we get an official action plan from the allergist.

 

Have you ever had the celiac panel after being on a full gluten diet for 8 weeks?

I have struggled challenging myself. I had been glutenfree for close to year, at most I can claim I’m gluten-lite right now in my feeble attempt to challenge myself.  I become miserable with gastric spasms (IBS), too many rushed trips to the bathroom, and lose mental clarity which ends up impacting my mood and energy for my professional work and ultimately caring for my kids.  I feel confident enough for a NCGI self-diagnosis but I realize that I need to pursue official determination for real. For her sake.

I admit I’ve been wishy-washy on the subject for myself mostly because its so hard to keep challenging myself intentionally and just praying for answers on her own accord without my prejudice. But I need to suck it up and just do it for both my kids sake.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#103 Aprilelayne

 
Aprilelayne

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 95 posts
 

Posted 26 March 2013 - 07:43 AM

holy crap....I just got in with my new doctor for next Monday.

Now just cross our fingers that she will listen to my woes about my personal ailments and see if we can run the nutrient levels and possibly some celiac panel tests.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#104 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 26 March 2013 - 08:04 AM

I swear this is "can't see the forest for the trees", regarding your doctors.

I hope you have better luck with this new doctor.

Remember what you've learned. Go in prepared and firm.
  • 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!

#105 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 26 March 2013 - 11:25 AM

Thank you for answering my questions!  That helped enormously.  It would appear that based solely on a negative tTG IgA they think they have completely ruled out celiac disease :huh:   Can one of them be convinced somehow that they should run both the IgA and IgG versions of the DGP (deamidated gliadin peptide)?  Before we go any further?  I am aware that because of her age this could well be negative also, but it is the most likely to pick up celiac in its early stages if it were in fact to be celiac disease, being very sensitive and very specific.  And yes, if you were to test positive it would most certainly help your daughter's case.

 

Awesome that you were able to get an appointment for yourself so quickly.  As prickly says, you must be very firm and don't let yourself be bossed around.  I would go so far as to write out what you want to say and practice saying it a few times before you go (no, don't give the paper to the doctor or read from it!  That is why you practice first :) ).   Watch for the little tricks they use to sidetrack you.  I would say, would you let me complete my case and then ask me questions.  I would do this with all the doctors, actually.


  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: