18M Old - With Genetics Against Her

[mushroom]

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.

 

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 ) get our heads around the issues.

[Aprilelayne]

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.

[Aprilelayne]

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.

[pricklypear1971]

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.

[mushroom]

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    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.

[Aprilelayne]

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.

[Aprilelayne]

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.

[Aprilelayne]

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.)

[Aprilelayne]

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.

[shadowicewolf]

Those are two of them its a start at least.

[Aprilelayne]

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.

[Aprilelayne]

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

[gfreemarketingguru]

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

[frieze]

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.)

[Aprilelayne]

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.

[Aprilelayne]

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.

[GottaSki]

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!

[frieze]

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.

[Aprilelayne]

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?

[frieze]

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?

[ravenwoodglass]

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?

Since you have been gluten light you cannot assume that you are not celiac. You also cannot assume that your poor child is not celiac as testing on little ones has even more false negatives than adult tests do. I really hope you are soon done with testing and can get your child gluten free for at least a couple of months. The symptoms and damage that may be happening to this little one while you try to get a firm diagnosis is heartbreaking.

[Aprilelayne]

I'm fairly confident that the allergist/immunologist will, like several board members here, suggest a trial period of gluten-free to see if we find any improvements.  While this is good, it will be difficult. 

 

My little one goes to daycare, no way around that. I've confirmed with our location that she is the only Soy Free kid, we have several nut allergy kids but ZERO gluten/celiac kids.

 

While I know that it will be me providing 100% of her foods, and having to prepare them at home is not a problem, its the environment and their willingness to help.  I'm sure if things go this direction, I will simply have to meet with the director with some protocol information and set out to make an action plan together with them how to have a Celiac kiddo in their mix.

 

*must not get ahead of myself*

[pricklypear1971]

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?

From what ive read, they don't know what NCGI means, other than it doesn't seem to show up on traditional Celiac blood tests and/or endoscopies (at least enough to be called Celiac).

So, yes, if you read between the lines plenty of people dx'ed with NCGI have nutrient deficiencies. But you also have to consider why they are dx'ed thus, instead of Celiac. Is the label given because testing wasn't done, done incorrectly, or done and one test positive/endoscopy negative...? It's all over the place.

Nutrient deficiencies are also linked to other AI diseases. I've never seen info if those who have deficiencies are/not dx'ed with Celiac/NCGI.

Also, both of you have gi issues which leaves open the idea that your intestines may not be absorbing nutrients optimally - regardless of cause. That can cause deficiencies.

[lisachrystine]

I just wanted to say hang in there. And, keep insisting on testing until you figure out the problem. My daughter was diagnosed with Celiac at 2.5. She had been sick her entire life - vomiting blood, low weight gain, failure to thrive, reflux... on Prevacid and every time we tried to wean her off of it, she would start vomiting within two weeks. I fired one GI doc who said she was normal and went looking for the best I could find within an hour's drive. Even at that, she had been scoped twice and had various other tests with no diagnosis. We were at our wit's end... we KNEW that this was not "normal" so I kept pushing. Finally, on her third scope, she came up with Celiac. She had been gluten-free for only a week when she said "mommy, my tummy not hurt anymore" It broke my heart. Poor little girl didn't know life without pain. I knew we had our answer. Took her off Prevacid, weight gain was back on the charts, no more vomiting (even when she gets a bug, it's minimal now). Her Celiac panels are all normal now and we are down to once a year at the GI. I don't know if that is your daughter's issue or not, but my story is simply to say - keep looking. It took me two and a half years of insisting something wasn't right, but it was so worth it to have our answer and have our daughter healthy.

[Aprilelayne]

Thank you everyone, I have days where I wonder if I'm barking up the wrong tree with all of this.

 

Vomit free since Sunday, but I think she's still nauseous, she holds her belly when she's sitting on the couch and rubs it.

Nominal appetite still.

Poop report from school for yesterday was a solid, but still pale yellow.

 

I had never made a note of it before, but noticed mouth sores are mentioned elsewhere on the board. I've never thought twice of it, but she's had one mouth sore in the corner of her mouth for months.  It more noticable some days than others, but its like a small blister (without a head) right in the corner of her mouth.

 

Allergist appt a week from today...