Help! DD (2 3/4 yo) has stopped growing. Celiac? Gluten intolerance?

[Namaste Amma]

I just realized that DD hasn't grown in the past four months at least, maybe longer. She was born in over the 80th % for height and weight, but is below 15% now. She is allergic to soy and dairy. She has had terrible dental decay, resulting in having to have the top four front teeth pulled. She has always slept terribly. Worse when she consumes dairy or soy, but in general, awful. As in, will not sleep without me there, wakes up every 20 minutes to 2 hours (ONE time slept 8 hours straight, ever). Her stool frequently has undigested food, is extremely foul smelling and irregular in frequency and consistency. She always has bags under her eyes and is frequently congested. I suspected gluten was an issue last year, but the ped and my BIL (a physician) blew me off and so I thought maybe I was reading into things. :( 

Does this sound like celiac or gluten intolerance? I have Hashimoto's disease and am going in to be tested for food allergies and celiac next week. We have an appointment with a new ped next week. Should I be pushing for testing for her as well? What else could be the cause of all these issues? What testing should we request?

Thank you so much for any responses you could provide. I'm so worried. 

[anjsmama]

Sounds like Celiac to me. DS & me are both Celiac - his symptoms started around 2 years 6 mo, diagnosed at 2 years 8 mo, now 2 years 10 mo and improving everyday gluten free. His biggest symptoms were inability to stay asleep, bags under eyes, lethargy/increased irritability, irregular bowel movements - when they finally came, they were foul-smelling with undigested food and often hurt to pass,  horrible joint pain (especially knees) and terrible tooth decay despite the fact we're infant/toddler brushers around here. He is still having some sleep and irritability  and  I'm wondering if he also struggles with soy and/or dairy, so we may do an elimination diet. But otherwise, he is doing so much better. He goes to the bathroom regularly, and actually was able to become an independent pottier in about a week's time, now that he actually has control. He's not in pain anymore and his mood is much better. 

Although celiac is something you carry for life, symptoms typically begin with a "trigger". When I was 14, I got mono and it had me on my back for three weeks. I had a whole slew of symptoms that it would take me years to type following that sickness, as if I never got better. I only got diagnosed last year at 21 - and I'm still recovering.... 7 years of damage is A LOT! Anyway, DS showed no issues until he got the stomach flu at 2.5, and then after he "got better" (over the flu, anyway) , he never returned to normal, and he lost 3 pounds. That's when I requested the pedi test him. He fought me, even though *I* have celiac, so just stand your ground. Especially since you're starting a new relationship with a new ped (we just did this month also), I'd be very clear about what you suspect and what you want done. 

Hope you get it figured out soon! It's so hard to watch them be miserable :(

[maryamb]

Yes definitely!  I would remove gluten as soon as possible.  Please note that you have to remove gluten completely from his diet and it might take anywhere from two weeks up to three months before you see changes.  It takes a long time for it to leave his system.  Most doctors are not aware of gluten intolerance side effects and therefore might give incorrect advice. 

Gluten is very hard to digest for anyone and causes issues for most people.  I would remove it from his diet even prior to testing because anyone with digestive issues should not be consuming gluten.

My son had similar issues from 15 months to 20 months, the only time I gave him gluten.  He had constipation, bag under his eyes, would wake up every two hours at night, eczema, only gained one pound during the five months and was always tired.  At 20 months we did a food sensitivity blood test by Genova diagnostics that confirmed he was sensitive to gluten/dairy/corn plus a leaky gut.  I removed all grains/ gluten/dairy and corn from his diet and have seen significant improvements.  Now we are working on healing his gut.  Good luck and let me know if you have any other questions.

[Namaste Amma]

Originally Posted by maryamb 

My son had similar issues from 15 months to 20 months, the only time I gave him gluten.  He had constipation, bag under his eyes, would wake up every two hours at night, eczema, only gained one pound during the five months and was always tired.  At 20 months we did a food sensitivity blood test by Genova diagnostics that confirmed he was sensitive to gluten/dairy/corn plus a leaky gut.  I removed all grains/ gluten/dairy and corn from his diet and have seen significant improvements.  Now we are working on healing his gut.  Good luck and let me know if you have any other questions.

How are you working on healing his gut? Is there an actual test for leaky gut? 

[Namaste Amma]

Originally Posted by anjsmama 

 That's when I requested the pedi test him. He fought me, even though *I* have celiac, so just stand your ground. Especially since you're starting a new relationship with a new ped (we just did this month also), I'd be very clear about what you suspect and what you want done. 

I'm so worried about this. My naturopath will order all of the testing, but if we go that route it will be very pricey, and I'm trying to avoid that. At least I have her as a backup, though. 

[Namaste Amma]

Is there anything else you guys think this could all be? My DH is doubtful because her teeth haven't visibly decayed since her surgery in March. He attributes her lack of growth to the fact that I change her diet around a lot because of the food allergies and trialing the soy and dairy to see if she's outgrown them (not doing that anymore after testing). I don't want to be missing anything and just jumping on the celiac/gluten bandwagon. My gut tells me this is what the problem is though, due to her symptoms and my autoimmune disease. 

[scsigrl]

Originally Posted by maryamb 

Yes definitely!  I would remove gluten as soon as possible.  

This is really bad advice to give anyone who is looking for a diagnosis of Celiac.  You have to be CONSUMING gluten to be tested.  There is only 1 standard test you can do when not consuming gluten (the genetic test) which is of minimal help in the diagnosis process.  There are several reason a person would want a definitive diagnosis (how strict you need to be, how "long" it will be an issue, school plans for a 504 and tax deductions for foods).

It could be Celiac or a number of other issues.  If you are going to the pers, yes, I would ask for testing if that's what your gut is saying.  

[Namaste Amma]

Originally Posted by scsigrl 

It could be Celiac or a number of other issues.  If you are going to the pers, yes, I would ask for testing if that's what your gut is saying.  

Do you have anything specific in mind besides Celiac? I've dug through so many forums and Googled my head off, and everything keeps coming back to gluten. I don't want to put DD through any more blood draws than necessary, so I want to make sure we cover all our bases. 

[scsigrl]

Originally Posted by jenc7237 

Do you have anything specific in mind besides Celiac? I've dug through so many forums and Googled my head off, and everything keeps coming back to gluten. I don't want to put DD through any more blood draws than necessary, so I want to make sure we cover all our bases. 

I don't have any other specific ideas.  There could be other allergy issues, intolerances or a combination of "high needs" baby and any of the above!  I am not saying it isn't, I would look into it for sure but there is nothing in your list that (to me) smacks of Celiac.  Then again, Celiac is a strange disease with many different incarnations!

Again, my biggest advice would be to get the blood work at MINIUM before removing gluten.  Otherwise if you want a definite dx, you have to put the kid back on gluten and then it is debated for how long and what amounts.  It's just easier to do it now!

[Namaste Amma]

Originally Posted by scsigrl 

I don't have any other specific ideas.  There could be other allergy issues, intolerances or a combination of "high needs" baby and any of the above!  I am not saying it isn't, I would look into it for sure but there is nothing in your list that (to me) smacks of Celiac.  Then again, Celiac is a strange disease with many different incarnations!

Again, my biggest advice would be to get the blood work at MINIUM before removing gluten.  Otherwise if you want a definite dx, you have to put the kid back on gluten and then it is debated for how long and what amounts.  It's just easier to do it now!

Thanks. Yeah, we are going to push for the antibody and genetic tests now. I'm not sure about a biopsy. Given my autoimmune disease, my kids should technically be off gluten anyway to prevent developing problems themselves. So I guess DH and I have to decide how important a diagnosis is.

[scsigrl]

Originally Posted by jenc7237 

Thanks. Yeah, we are going to push for the antibody and genetic tests now. I'm not sure about a biopsy. Given my autoimmune disease, my kids should technically be off gluten anyway to prevent developing problems themselves. So I guess DH and I have to decide how important a diagnosis is.

Yeah, *most* Dr. won't diagnos with just blood testing.  If you are dead set against a biopsy (if you need one that is) you may want to take to the Dr. about doing the initial blood work and then going GF and retesting ttG levels at 6 and 12 months if they are elevated in the first place.  I am not sure WHY this isn't given as an option as there would be no other reason for ttG's to come down on a GF diet besides Celiac but...ya  know. The medical machine :)  This is what we ended up doing after an inconclusive scope.  His levels went from 220+ to 49 in 6 months.  We are getting new blood work done this week (he's been GF for a year now) and we'll see if they are normal now.

[Namaste Amma]

Originally Posted by scsigrl 

Yeah, *most* Dr. won't diagnos with just blood testing.  If you are dead set against a biopsy (if you need one that is) you may want to take to the Dr. about doing the initial blood work and then going GF and retesting ttG levels at 6 and 12 months if they are elevated in the first place.  I am not sure WHY this isn't given as an option as there would be no other reason for ttG's to come down on a GF diet besides Celiac but...ya  know. The medical machine :)  This is what we ended up doing after an inconclusive scope.  His levels went from 220+ to 49 in 6 months.  We are getting new blood work done this week (he's been GF for a year now) and we'll see if they are normal now.

What a fantastic idea! Thank you!

[maryamb]

Originally Posted by maryamb 

Yes definitely!  I would remove gluten as soon as possible.  

This is really bad advice to give anyone who is looking for a diagnosis of Celiac.  You have to be CONSUMING gluten to be tested.  There is only 1 standard test you can do when not consuming gluten (the genetic test) which is of minimal help in the diagnosis process.  There are several reason a person would want a definitive diagnosis (how strict you need to be, how "long" it will be an issue, school plans for a 504 and tax deductions for foods).

 Yes, one has to consume gluten for a celiac diagnosis.  However you don't have to have celiac in order for gluten to cause damage.  My son does not have celiac however he is gluten intolerant.  Just having had gluten for only 5 months caused him to have a leaky gut.  There's not 100% accurate test for being gluten intolerant.  The best test case is to remove it from your diet for up to three months and see if you feel any better.  Even my son's test technically said that he was not gluten intolerant because his antibodies were not above the limit.  They were close however and his doctor knew enough to tell me that it would only get worst if he continued to eat gluten.

What I was trying to say that most people would benefit from removing gluten, specially people that are already experiencing health issues.  This may not be the root cause, but it could only help.

[maryamb]

 How are you working on healing his gut? Is there an actual test for leaky gut? 

His doctor diagnosed a leaky gut based on the number of food sensitivites (not allergies) that came back in his report.  Based on the results, we immediately removed all grains from our diet since they are hard on the digestive system.  We were already dairy free and corn free at this point.  We also started a rotation diet meaning he can have foods that he has a medium sensitivity to once a week and foods that he has a low sensitivity to twice a week.  In addition, we supplement with magnesium, probiotics, cod liver oil, vitamin c, B Complex, glutatione and digestive enzymes.  There's a GAPS diet that's meant for healing a leaky gut however we have not started that since it's very time consuming and his doctor does not think it's necessary at this point.  It has been six months that we have been on this diet and I have seen significant improments but cannot say that he's healed.  So far it's a work in progress.