Talk Me Down From The Edge...

[africanqueen99]

This is about my 8 y/o (also referred to as oldest).

 

In Fall 2012 she complained all the time about stomach aches.  She would have to get up from the meal to relieve herself - every time, sometimes multiple times.  She went from being really tall (90%) to more average (50%).  The GI ran a panel and celiac came back negative.  We were told that the "pain" is typical of little girls when their reproductive organs are growing and moving and they are unfamiliar with those feelings.  There was a technical term, but I don't remember it right now.

 

In Fall 2013 her then 1.5 y/o sister was DX with celiac.  (I have some questions about this too since she was basically a baby and used the same blood tests - now I keep reading how unreliable they are, but that isn't my question today.)  So the oldest and middle kids were tested - both had bloodwork come back in that "questionable" area and both had negative endoscopes.  Because the oldest had those other issues (at this point, she had lost weight in over a year, still had stomach pains, still relieving herself every time she ate, etc) we got the celiac DX and called it a day.  She has been 100% gluten-free since 10/2013.

 

Now we are at today.  Not every time, but still often gets up from a meal to relieve herself.  Which is a key that either we are missing something or celiac isn't the issue.  She hasn't really grown and is so stick thin I doubt she's gained any weight.  The big thing is that the stomach aches are gone.  She told me she can't remember the last time she had one.

 

Looking back on all this I think I was so completely overwhelmed with my baby having celiac and didn't want her to be alone.  Not that I wished celiac on my oldest, but did I push this?  The kids' GI is laid back and she knew that having a formal DX would help in school for both girls.  BUT, if she doesn't have celiac and just has a gluten intolerance, I don't want this label placed on her.  I mean, if she can go to a birthday party and eat a cupcake then she's not odd-man-out.  Yes, in 3rd grade, it's a horrible thing to stick out in ways like this.

 

So I'm calling the GI tomorrow at 8:30a to get an appointment. I'd like blood run again - I know that the numbers will be screwed up, but that's neither here nor there.  But, more importantly, I'd like the genetic testing done.  If she doesn't have the genes, she can't have the disease, right?

 

Our house will still remain 100% gluten-free.  So will lunches and snacks sent from home.  I'm so hoping that the genetic testing comes back negative b/c this added stress is a lot for a kid to deal with.

 

Has anybody else ever looked back on your path and wondered?  I feel really alone right now and hope I didn't screw up my kid.

[ravenwoodglass]

While it is fairly rare there are diagnosed celiacs without the most recognized celiac genes. I am one of them.

It sounds like your oldest has gotten some relief from the diet. That is a good thing and a good indication that she needs to be on it. 

Have you told her GI or ped about the continuing issues? It is possible that she has something else going on in addition to the celiac. It could be another intolerance or some other medical issue that is causing the continued problems.

You say she often goes to the bathroom during a meal or shortly after. Do you know if she is having D? Is she relieving herself or does she often get there and then find she didn't really have to go? If the latter is the case she may have a hard time recognizing normal body feelings, like gas, and be fearful she is going to have an accident. If she is going that frequently then hopefully the doctor will be able to help figure it out. If you haven't already you could try eliminating dairy and soy to make sure she isn't having issues with those. 

[nvsmom]

So I'm calling the GI tomorrow at 8:30a to get an appointment. I'd like blood run again - I know that the numbers will be screwed up, but that's neither here nor there.  But, more importantly, I'd like the genetic testing done.  If she doesn't have the genes, she can't have the disease, right?

 

That's not entirely true.  Only 97% of celiacs have the DQ8 or DQ2 genes.  3% of celiacs do not have those genes, so while it is true that it is highly unlikely that she would have celiac disease without the genes, it is still very possible.... Look at it this way, she had a <1% of having celiac disease, but if she has celiac disease she has a 3% chance of not having the genes for it - that's greater odds than of having celiac disease (regular population) in the first place.

 

If she had positive celiac disease tests, had celiac disease symptoms, has celiac disease in the family, feels better on the gluten-free diet (mostly) then all indicators are really pointing at celiac disease.  

 

She has been gluten-free for just over a year and still has symptoms, To me that could be one of three things: 1.  She is still healing, 2. She is still getting gluten in her diet, or 3. Her bowel movement frequency is still being caused by something else - another intolerance like lactose, corn or soy.  

 

I would look into other causes...

 

Best wishes to you.

[africanqueen99]

You say she often goes to the bathroom during a meal or shortly after. Do you know if she is having D?

She's of the age that discussing these things is like "OH, MOM!!", but, yes, D or very soft stools.  She's a lot like me in that the first trip to the loo gets things moving and the second finishes the job.  And, just like me, it's so obvious that the food is causing the trip to the bathroom.

 

Ugh, I didn't want to consider eliminating more from her diet.  I'll bring that up to the GI too.

[StephanieL]

So the baby did have a + biopsy?  

 

You say the 8 yo was dx based on blood.  What were her test results?  

 

Did any of the other kids have the genetic tests run?  

[BlessedMommy]

 BUT, if she doesn't have celiac and just has a gluten intolerance, I don't want this label placed on her.  I mean, if she can go to a birthday party and eat a cupcake then she's not odd-man-out.  

 

I have an 8 year old and I was really relieved when she tested negative after being gluten challenged. (we had tried to take her gluten free years earlier due to bad medical advice) I was glad to close that chapter and get on with letting her eat whatever. So I get where you're coming from, on not wanting her to have celiac.

But if your daughter has NCGS, then the treatment is the same. She still couldn't have the cupcake at the birthday party. NCGS people can get just as sick from gluten. And if your daughter gets very ill from glutening, then probably gluten still couldn't be introduced.

 

I wish you well in figuring things out. Have you considered gluten challenging her and retesting after the challenge?

[africanqueen99]

So the baby did have a + biopsy?  

 

You say the 8 yo was dx based on blood.  What were her test results?  

 

Did any of the other kids have the genetic tests run?  

Negative biopsy.

 

I have to go find her results, but the titer was <4.  She was 7, I think.  That particular test was 5-10 = "probable" and 10+ was "positive."

 

No, we didn't run the genetic tests on any of us.

 

My husband and I both have un-DX GI issues.  My test came back at 7, too.

 

 

 

 

I wish you well in figuring things out. Have you considered gluten challenging her and retesting after the challenge?

I have an appointment with the GI in mid-January.  I'm going to lay it all on the line.  Personally, I'd love to pull the gluten-free rug and challenge her starting today so she can enjoy all the glory of Xmas food.  Then bloodwork when we go see the GI.  That's probably not advised, though, right?

 

I get that it's very likely she has celiac or NCGS.  What's the real difference between the two?  Same diet, but celiac causes damage with gluten while NCGS causes GI distress?

[BlessedMommy]

You said in your sig that you suspect that your kids got the celiac gene from you. Have you considered gluten challenging yourself and getting tested for celiac?

[africanqueen99]

I was tested back when all this started and was also in that weird middle ground.  I was 100% gluten-free for that first year while I was still nursing.  Had a couple of gluten containing meals in the past few months - and every time it causes huge GI distress.  Knowing how it makes me feel I wouldn't do a challenge, but I really don't need to since I was tested last year.

[africanqueen99]

I think what gets me is that the oldest was in that middle ground so we could have gone either way.  I erred on the side of caution and now I feel guilty.  My youngest was off the charts (100+, with 100 being the highest number) in two separate blood draws so there was no wiggle room - it was clear.

[nvsmom]

I get that it's very likely she has celiac or NCGS.  What's the real difference between the two?  Same diet, but celiac causes damage with gluten while NCGS causes GI distress?

 

As far as I understand it, celiac disease is an autoimmune disease that causes damage to the intestines (and possibly skin) along with 300 other symptoms including GI distress. NCGS does not cause the intestinal damage or dh, and it is not an autoimmune disease so you would not be at increased risk or other autoimmune diseases.  NCGS has all the same symptoms as a celiac but the symptoms tend to resolve a bit sooner on the gluten-free diet (based only on what I have observed).  Severity of the symptoms can be equally horrible or mild.

[StephanieL]

But it isn't clear.  I know everyone here will say with numbers that high there is no wiggle room. + blood but - biopsy with no other indicators (i.e. Genetic, signs and symptoms that resolve on the gluten-free diet and so on) it sounds like a bit of a jump to begin with.  Why did you do the blood work to start with for the baby?

 

Even if you go by the 4 out of 5 rule (which even Fassano doesn't follow for children) it looks like you had only + blood for the baby right? 

 

If the GI appt is in Jan. you won't have enough time for a full fledged challenge  They want 4-6 weeks MINIMUM.  If you are considering challenging it and want to start now, push the GI appt for Feb. when you'll have a better chance of getting proper blood results.  They can do the genetics at that time and you won't have to worry about 2 draws.  

[cyclinglady]

My heart goes out to you. Making a decision for yourself is hard but to have to do so for your children is even harder.

I do not think you made a mistake regarding any of your children. It sounds like your daughter may have another medical issue.

Honestly, eating gluten free is not awful. I impose the gluten-free diet on my own kid but do allow her to consume gluten outside of the house. She eats very healthy for a kid her age. That is good!

I barely was positive on my blood panel. Good thing the doctor ran the complete test or I never would have been diagnosed. I did have severe damage, but anemia was my only symptom at the time I was diagnosed.

Looking back, I probably had celiac disease my entire life. I always had tummy issues since I could remember but those tummy issues came and went. I had food intolerances and allergies that would worsen and then diminish. What I am saying is that celiac disease symptoms evolve and change. It is not consistent.

I would ask for the genetic testing. I think you caught celiac disease early in your kids and that is a good thing. I will continue to get my daughter tested every few years (and check for anemia) since both hubby and I have gluten issues. Autoimmune disorders run rampant on both sides of our family.

[africanqueen99]

Why did you do the blood work to start with for the baby?

She literally stopped growing at 12 months and dropped off the charts.  Bloody murder screaming all night long.  She turned into a horrible sleeper (we went the route of a Ped Sleep Therapist to get over the hump - looking back it is so obvious that she was in pain).  She was DX with Failure To Thrive at 15 months and I was given until her 18 month check-up to fatten her up.  It didn't work so we started checking blood for everything.  Celiac panel came back at 18 months and we immediately removed gluten.  She fattened up, started sleeping, stopped screaming, etc.  The kid went from looking sickly to having cheeks - she went from having the celiac belly with twig legs to filling out.  Gluten was so obviously hurting her and we fixed that and b/c we don't do baby food, but also don't start real food until the kids are closer to 12 months it was hard to catch.

[africanqueen99]

Honestly, eating gluten free is not awful. I impose the gluten-free diet on my own kid but do allow her to consume gluten outside of the house. She eats very healthy for a kid her age. That is good!

 

...

Looking back, I probably had celiac disease my entire life. I always had tummy issues since I could remember but those tummy issues came and went. I had food intolerances and allergies that would worsen and then diminish. What I am saying is that celiac disease symptoms evolve and change. It is not consistent.

I know it's not a horrible diet, but being "different" is a big deal for this age.  You know what's funny is that this kid is such a little Punky Brewster - she marches to her own beat.  She's a *cool* kid in every way that she gets to choose.  So having this imposed issue just isn't cool to her.

 

Looking back I have always had GI issues.  In fact, I was hospitalized many times as a kid in the early/mid 1980s to try to figure out why I always had stomach aches.  I ended up being DX with endometrial type webbing growing in my stomach.  Once all this started going on I realize what a crock this sounds like - sounds like they had no idea and just gave my parents something.

[africanqueen99]

So, knowing the basics of this, where would you (all of you) go with this?  Would you start with the genetic test and then regroup?  Do a challenge before the GI visit without her knowing about it before you got there?  Wait and talk to GI and plot out a program?

[cyclinglady]

I would go with the genetic test first. When you get the results, you can determine with your GI if you need to do a challenge.

[cyclinglady]

I know it's not a horrible diet, but being "different" is a big deal for this age.  You know what's funny is that this kid is such a little Punky Brewster - she marches to her own beat.  She's a *cool* kid in every way that she gets to choose.  So having this imposed issue just isn't cool to her.

 

Looking back I have always had GI issues.  In fact, I was hospitalized many times as a kid in the early/mid 1980s to try to figure out why I always had stomach aches.  I ended up being DX with endometrial type webbing growing in my stomach.  Once all this started going on I realize what a crock this sounds like - sounds like they had no idea and just gave my parents something.

Ha! I get being different! I have a 13 year old who is now very aware of what people think and strives to fit in. That really blossomed when she went to middle school. Her best friend has a severe peanut and milk allergy and through the years everyone has accommodated her without making her feel like an outsider.

Because of all the autoimmune disorders in our family -- the worst were MS and RA (probably undiagnosed celiac too), I want to do my best to prevent my kid from getting any of them or at least catching them early to off set damage. Not sure if it is possible, but I will watch her like a hawk. Until then, she is gluten light.

[frieze]

is she going to the BR for that reason, or is she vomiting, ie bulimia?

[africanqueen99]

Definitely not vomit.  She's young enough that needing to vomit still causes a lot of anxiety and tears.

[Cara in Boston]

My 9 year old was diagnosed at age 5 with positive blood tests (IgG only, negative on all the IgA tests) and biopsy.  The first doctor didn't believe he had Celiac despite his positive blood test because he had no symptoms and was not underweight.  He speculated that maybe there was a lab error.  (By that time, I had a positive blood test myself, so there was too much coincidence to give up)  He had the genetic test and that just added to the confusion because he was found to be "not likely" to have celiac.  Weird.  We took him to the celiac clinic at Children's Hospital and they did the endoscopy.  He was found to have extensive damage and has been gluten free since then.  

 

The genetic test WILL NOT rule out celiac.  It really doesn't tell you anything at all, since people with the genes don't always get it and people without the genes can still have it.  There you go.

[africanqueen99]

Oh, man.  This is killing me.  So she can come back negative from the genes and still have it?  Without a positive biopsy I feel like I'm swimming with the sharks...

 

Well, the stomach aches have gone away altogether so stripping out gluten has done wonders.  I wish I could figure out the bigger picture.

[kareng]

Oh, man.  This is killing me.  So she can come back negative from the genes and still have it?  Without a positive biopsy I feel like I'm swimming with the sharks...

 

Well, the stomach aches have gone away altogether so stripping out gluten has done wonders.  I wish I could figure out the bigger picture.

I would stick with the experts on this. Here is the current thought on genes -

Open Original Shared Link

Can you have celiac disease without having the genes for it?

This topic raises much debate. The current thought shared by the many physicians and scientists is that 1-2% of celiacs may not possess the celiac-specific genes HLA-DQ2 and/or DQ8. Our Dr. Guandalini and Dr. Bob Anderson, chief scientific officer of ImmusanT, believe the genes are necessary to initiate the immunologic response of celiac disease, hence you cannot have celiac disease without them.

Dr. Anderson retrospectively reviewed hundreds of celiac patients, 2% who did not have the genes, and with each he was able to conclude that the celiac diagnosis was actually wrong: some had Crohn’s disease, some Giardia infection, and some had immune deficiencies.

[nvsmom]

I went looking for scientific articles with patients who have celiac disease but not the DQ2 or DQ8 genes, and there wasn't much.  Most reiterated that the vast majority of celiacs have the DQ2 or DQ8 genes but most also mentioned a small minority of confirmed celiacs who did not have those genes like this one  file:///C:/Users/Bowen%20family/Downloads/ICDS-2013-Genetics.pdf or this one Open Original Shared Link.

 

The doctors seem less sure of the previous celiac disease diagnosis when the genetics were negative, sort of like how some doctors are when the biopsy is negative after some positive celiac disease blood tests - and we know that that can happen.  As it is, it looks like some believe celiac disease is possible (if unlikely) without the DQ2 or DQ8 genes and some do not.  We've had a couple of board members who have experienced this situation so my guess, and it is only my opinion, is that the door should not be shut on this possibility yet; I don't think they know it all in this area yet.

[africanqueen99]

Well, we met with the doctor to get to the bottom of this.  After hearing my concern and then talking to my girl we figured it out.  Going to the bathroom is her behavioral tic.  That's right, she does it out of habit with us.  Doesn't happen at school.

 

I love that weird, quirky kid that uses peeing as her way to be different.