Celiac questions

[jcent]

hi all,

I don't post often, but I am beyond stressed right now and need some help/support.  My daughter is just over 18 months.  She was in the 50%ile until 6 months (15.5lbs), but then it started to decrease.  At a year, she was 19 lbs.  I knew she was small, but kept feeding her as much as she wanted, offering healthy foods all day long, preparing multiple meals etc, anything to get her to eat and gain weight.  3 months ago I though it would be a good idea to weigh her at home, so we bought a new scale.  She was 19.6lbs...slow gaining, but gaining.  Then a month later she made it to 20.2lbs, still an improvement.  Then, for the next 2 months, until now-nothing-still 20.2lbs.  I knew I couldn't ignore this any longer so we went to the doctor on Monday.  They weighed her...17lbs, 6oz...I just about cried.  Obviously our scale is horribly wrong  and somewhere in the last 6 months she lost 2 lbs.  I think that even though my scale is off though, it shows a consistent weight for the last few months, so the drop was  before that.  Anyway, our doctor has referred us to a pediatrician now, so we have to wait 3-4 months for our appointment.  She said though, that she thinks it may be Celiac's so in the meantime, go gluten free and see if that helps.  Our DD also has a slightly distended stomach, and is getting some fuzzy hair on her back and tummy.  As well, 3 months ago she developed eczema all over her body.  This is our third day being gluten free and when I weighed her at home today the scale was at 20.6.  I know my scale is wrong, but think it may be right in the sense that it will at least show weight fluctuations and if she is gaining.  Or maybe I am just so desprete for her to gain weight and be healthy that I am just telling myself that.

So,  for those of you that are familiar with Celiac's, do you think this is what she might have?  If it isn't this, what else could it be?  I still breastfeed, so I have taken gluten out of my diet as well.  I have also cleaned out all the cupboards, and my hubby has to finish all of those gluten treats at work.  For months now I have had my DD eating healthy fats mixed in with her food, and I offer her Ensure daily, just to try to get extra calories and nutrients into her.  Any thoughts or suggestions?  I am overwhelmed and scared that I won't be able to get her to gain weight.  She is also a picky eater and prefers to nurse still.  I always offer her food first, but she still does nurse a lot.

[Panserbjorne]

Hey there, mama.  First off, welcome.  Secondly, I'm so sorry you're dealing with this.

My dd was the first in our family to be diagnosed with celiac.  I was diagnosed at the same time, dh a few years later and my other two as a result.  So yeah.  I'm familiar.  Dd was about 15 pounds at a year with no real interest in food-she just wanted to nurse and was looking worse by the day.  She was officially diagnosed as FTT before the testing for celiac began.

It does sound quite possible that your dd has celiac.  Is there any history of digestive issues in your family?  Celiac disease doesn't always present with bowel problems, but it is a common symptom.   

If you're asking what I'd do I'd get her off gluten and keep her off.  BUT if you do that you risk not getting a positive test result depending on how long she's been off when the doc decides to test.  It's going to depend on how important it is to you to have a diagnosis, and how strict your care provider is.  Most want to see a positive test (usually at TTG and an IgG) and not just improvement off gluten.  If they're willing to say an improvement off gluten plus a positive genetic test is adequate, then you can always do that test regardless of gluten consumption (or lack thereof.)  I don't know many that would diagnose that way though.  Our doc skipped the biopsy because the blood test and genetic tests were positive and dd was textbook.

In our case I removed gluten, grains and sugar.  I went on a fairly strict diet (the specific carbohydrate diet) but it worked like a dream.  She went from not being willing to eat food to eating everything in sight.  She gained a ton of weight really fast and became practically robust.  I would say that in under a month you could see a difference in her.  Her hair started to grow, as did her nails.  She looked vibrant and became much more cheerful.  I do credit the lack of refined foods in part (though of course removing gluten was big) but the diet was nutrient and calorie rich, which was what she needed.  She was about 16 months when we started it.  She's 7 now and perfectly healthy.  We still eat pretty primal because it works for us, but I don't freak out over rice or sugar here or there.  No gluten though.  NEVER.  She was so damaged as a baby that I don't think I'll ever loosen up on that one.  I mean, it's not a sensitivity.  It's celiac disease which, while totally manageable through diet can be extremely dangerous if you are not compliant.

Best of luck in seeing the new doc, and I hope that you have answers quickly.  I also hope for you that you see the kind of turn around we did.  It was truly miraculous.

[scsigrl]

Who suggested going gluten free before testing?

That is NOT a good idea at all if you want an actual diagnosis.  You will not be able to get any accurate testing while on a GF diet.  I would have the ped at least order a Celiac series BEFORE pulling gluten if you have a 3-4 month wait to see a GI.  Taking a kid off for that long and putting them back on for testing is not a smart thing to do.

[jcent]

Thank you both for your replies.  It was our GP that suggested the GF diet, and the referral is for the ped.  If we need a GI that will be much much longer.  I understand what you you are saying about the testing, and I guess for us, a positive test result isn't really important.  Perhaps later in her life she will want that, but what my DH and I are most concerned with right now is just having her be healthy and gain weight.  17 lbs is just too small for me to be comfortable with; I can't just sit here and do nothing for 4 months and watch her get even more pale and sucken in looking everyday.  Maybe that is wrong, but I am more concerned with her than I am about an actual positive result.

My DH was diagnosed with IBS but no actual testing was done.  Perhaps he has Celiac's...that is something to consider for sure.  Again though, if we got his guts under control, then we would just be happy with the outcome.  Our DD had loose stools until about 2 or 3 months ago.  I always just htough it was becasue she breastfed so much.  Now however, she doesn't poop as often I think is healthy; it is every 2 or 3 days now.  I have tried a little prune juice, but it really hasn't been successful.  When she does poo now, it is solid and healthy looking and she isn't straining to go, she just isn't going very much.

Panserbjorne, how long was your DD turnaround time abou?  Are we talking weeks or months?    We are a low sugar houshold, but not a no sugar household.  We do have  treats though.  And we do eat rice.  We also have alot of flax though and quinoa.  We also try to do as much organic as we can, and we have a excellent source for grass fed beef and free tange chickens.  I feel good about the choices we make with regards to food, and feel like I do offer our DD healthy options.  Getting her to actually eat though is another thingf altogether.  We have recentlt starteding blending green drinks as well, as recommend by our natural foods store owner, so hopefully that will help as well.

[scsigrl]

Again, I would suggest your GP order the blood work before you do any more GF if you are going to go through to a ped/gi at all.  If you have nothing to go on but a guess and "She's better" I would think they will just tell you "Go on and do that."  If that's the case, you haven't accomplished anything by seeing the ped (since you are planning on going GF anyway).  I just don't see why go to the ped if you are already planning a course of treatment.

Anyway for us, it was 3 days when we saw GI improvement with our DS.  It wasn't necessary to go off anything more than he already is/was (Top 8, bananas, blueberry, coconut/palm).  

[jcent]

Thanks for that.  I know what you are saying and see your point.  I guess part of the point in going to the ped, is that I can't get her into a ped without a referral and would really prefer her to have a ped, as opposed to our regular gp.  So if things do improve and he says "ok, just keep doing that then" it is fine and now she has a pediatrician that I can go to anytime I want.  I did ask our GP about doing the testing now, and she said that this is out of her expertise and that it would all be handled with the pediatrician, lol.  This is one of the main reasons I want her to have a proper pediatrician.

[scsigrl]

Okay.  I get it :)  I also understand that for some people that a dx is not important (I do get that you just want your baby to feel better!)  I am not sure if you are in the US and if you are if you plan to send your child to school but if you want things like a 504 plan to keep your child safe, you need a dx. I am not sure how it is in other countries as far as keeping kids safe in school but here that is what you need :)

I also get the pulling vs. not pulling gluten from the diet.  DH and I struggled with this for a few months before we chose to pull gluten AFTER several Celiac blood tests and a biopsy.  I get that it isn't an easy thing to do and decide.  I get how you question what to do.  Please know I am not trying to say you have come to these decisions without a lot of thought. I am sure you have :) You are a great Mom for getting to the bottom of this so early!

This is a general statement but if the GP isn't comfortable to order a test, why would the GP give you ANY advice as far as stopping gluten if it is out of her experience?  

[Panserbjorne]

Jcent....is your GP licensed?  even if it's out of range of expertise (not sure what that means exactly-I guess that she doesn't often test for it?)  all it is is a standard blood test to start.  She can certainly order it if she has privileges.  Yes, she may not feel qualified to interpret it, and that's fine.  But doing the draw sooner rather than later is a good move.  She can forward results to the ped.

Now, I will say that right now it feels important to get her on track and I agree.  However if she's dx with celiac that brings it's own benefits.  You can write off the "expensive" GF food for tax purposes.  having that in her chart is going to be helpful.  It can help with well meaning friends and family that just want to give her a taste of things or didn't see "gluten" on the label and decided it was safe.  All that AND if you decide that you do want a definitive diagnosis then she's going to have to go back on gluten for around 2 MONTHS minimum.  Since she's already on it currently (I know you've recently cut it) you should just get the draw done if you can.  It's going to feel silly later on to not have done it.  I would NOT wait weeks to take her off of gluten for sure.  I would push for the basic test is all.  IF you need help understanding what to ask for (which tests) we're here.  Many of us have BTDT and there are tests that she's going to have to write it if you want the best possible answers.  Not a big deal, you just need to tell her.

For us the turnaround was FAST.  Like I said, new kid in under a month but you could see a change in under a week.  In just 3 days she was suddenly eating everything she saw.  I did the SCD because she had multiple issues and I wanted to really affect a change fast.  It did.  I think she still would have done well GF, but honestly I do think it would have taken longer.  I think for anyone in a dire situation getting off sugar and grains is pretty important *in the healing phase.*  That's not to say you have to eat that way for life.  When she's 28 pounds you're going to feel like the situation is a bit less urgent though.

[jcent]

Thanks you guys!  I will call and see if she will just order the test and then have it sent to the ped.  She is licensed, lol.  We just live in a small town and Drs are "different" here.  As well, most of the patients are seniors.  The town has a retirement home thataccounts for 50% of it's population, so  think by out of her expertise she just meant that she doesn't get FTT kids in her office and that is why she feels she has to refer us out.  Which, as I mentioned, is fine with me, as I would prefer a specialized doctor for our child(ren).

We are in Canada, so I am unsure of the school situation with regards to special dietary concerns.  Honestly though, we are probably homeschooling,  But in the off chance that we decide not to, I can see how the diagnosis would be valuable.  Same with the tax deductions, although again, I am not sure if that is an option.I do mot know if they let us do that for one, but also, I have tried to claim medical expenses before, and the minimum amount you had to pay out first was so high that I was uneligible.  Another thing to look inti though, for sure.  SO thank you both for the additional information.

[prescottchels]

I'm celiac myself and I'm doing an independent study for college on celiac and have just read that casein in dairy products has similar effects on the body as gluten so you may want to consider limiting or eliminating dairy for a while too. I feel for you and your sweet girl.

sending good vibes your way that she turns around quickly!

[jcent]

Thanks!  I actually know a child that has a reaction to both gluten and casein.  I will monitor her and see.  She really likes some dairy, and I would hate to take it away if I didn't have to.

[Panserbjorne]

gluten, dairy and soy are all quite similar in that regard.  I can do dairy, but no one else in my family can (horrible stomach pain even from hard cheese which *should* be safer.)  It's quite true that a high percentage of people with gluten intolerance let alone celiac disease can't do dairy or soy.  They tend to be cross reactive.

Jcent, I fully support you seeing a ped.  I just think a simple blood test now, with gluten still in her system would be super valuable.  From one BTD gal to another. 

[IsaFrench]

may I ask Scsigrl, why coconut/palm had to go ?

.... and what are the top 8 ?

thanks (trying to educate myself)

[Panserbjorne]

gluten, dairy, soy, eggs, peanut, shellfish, tree nut, fish.

depending on where you look citrus and chocolate can also make the list.  This is for the US.

[scsigrl]

Originally Posted by IsaFrench 

may I ask Scsigrl, why coconut/palm had to go ?

My son is allergic to coconut and palm/palm oil cross reacts with coconut.

And the Top 8 listed as Panserbjorne said varies in Europe and other places.  They are the "top" allergens in a given region. Again, my DS is/was allergic to all 8, now 6 of them and we are testing for soy in a few weeks.
 

[IsaFrench]

thank you for your reply

it didn't cross my mind that a top 8 list of allergens could be different for Europe ... I don't know of any parenting forums where I live now, I like Mothering anyway!

[jewellz]

((((((Hugs)))))) I know what it's like with a low weight kiddo. My 30 month old son just hit 20 lbs. He was diagnosed with FTT when he was about 6 months old. Our family has problems with gluten and he also had problems with dairy and has gotten over that. Still has problems with eggs and we try to avoid soy as much as possible.

Gluten damages the villi in the intestines and dairy is digested through them and when it can't, then the person starts to have trouble with dairy. Soy can have the same problem. So it's best to avoid soy and dairy too for at least 6-12 months. Also oats and some grains, which should be included in with the gluten family. The body will heal faster off of dairy and gluten then only removal of gluten.

We stopped eating gluten foods 4 years ago and I remember it took a few days for symptoms to start going away. But just last year I forgot to check a new med for gluten and took it for a month. Realized it and switched back to an old med and it took a while for the symptoms to go away. Found out that my youngest started reacting too and now all my kiddos react to gluten in different ways but they all do and likely any more kids we have will so they will never be introduced to gluten.

But ((((HUGS)))).

[jcent]

Thanks for your reply Jewellz.  This is our 5th day gluten free and she has gained 7 ounces!!  So that is a wonderful start.  I have also added a probiotic that is  not yogurt.  The only dairy she eats is yogurt, but I have never let her have milk.  I offered cheese, but she doesn't want it, so that is fine.  Perhaps I should try some diary free yogurt.  We also try to avoid soy, but I am not being sticky about it as of yet.  Beyond just the weight gain though, we are seeing other improvements; she is much more energetic and playful and she is eating more.  Not a lot more, but more.  And her skin is looking better.  :)  I think we are definitely on the right track.  Thank you for the support, it is always nice to hear others' stories and to know that there are other parents out there going through the same thing.

[Panserbjorne]

Jcent, if you have access to it I LOVE coconut milk yogurt.  If the only dairy she's actually getting is yogurt I'd probably just take it out of the equation for now.  That's a super quick swap and the coconut yogurt is seriously tasty.  The vanilla tastes like cake batter. 

You may be able to add dairy back in with no problem at all, but for now I'd give it a few weeks with none since she's really not getting much at all.

[jcent]

That sounds absolutely delicious!!  I will hunt around and see where I can find some.

The strangest thing happened last night.  Our DD was refusing to go to bed, lead me into the kitchen opened the fridge and pulled out a bunch a food that she said she wanted.  It included yogurt, apple and bacon.  I thought it was pretty weird, but I cooked her a slice of bacon, she ate amost the whole thing, pluse 2 pieces of apple and a yogurt cup.  That is the most she has ever eaten.  Same thing at breakfast this morning.  She ate all of her eggs plus some of mine.  My DH and I are in shock, just to see her wanting to eat and actually asking for food.