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Toddler With Suspected Celiac


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#1 Sesara

 
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Posted 28 April 2012 - 07:14 AM

Hi all. I am mom to a 20 month old hellion whom I suspect may have Celiac's. Here are the basics of our situation:
-DS has always been fussy since birth, and a horrendous sleeper; at 20 months, he has yet to STTN or even close to it
-Is a "hot sleeper"
-Exclusively breastfed until around 9 months, when he started taking in small amounts of solids, though major solids consumption didn't start until he finally cut his molars and canines, around 16 months.
-Since starting solids, his weight gain has plummeted and he has gone from the 80th percentile at 6 months to the 8th percentile at his 18 month appointment
-Growth has also plummeted, going from the 90th percentile at his 6 month to the 50th percentile at his 18 month appointment
- Has never had great stools, but they were formed, on and off, until just before 18 months, when he had two stomach bugs in a row. Since then, he has had persistent diarrhea. He does not drink juice and I have cut way back on his fruit consumption, which helped some, but did not fix the problem
- Since the stomach bugs, he has demonstrated symptoms of secondary lactose intolerance when eating too much cheese or very fresh cheeses, which has worsened recently. I never regularly gave him fresh milk, because of his general unwillingness to drink it; however, a week ago and , he drank another child's milk, and since then, he has been unable to tolerate any dairy without serious diarrhea.
-Stools are usually very pale and greasy
-Pediatrician, at my insistence that something is wrong, has tested him for a number of intestinal parasites, c. diff, giardia, made me eliminate all fruit except apples and bananas for a week, and tested him for cystic fibrosis, and finally started the referral process for a pediatric GI about 3 weeks ago, and I finally have an appointment.
-Being treated for sensory issues, and OT says he has poor muscle tone

I got tired of waiting for an appointment, and, after the milk incident, cut all wheat out of his diet for the last week - we haven't seen any real improvement, which is discouraging. I've tried restricting his dairy to lactose-free cheeses, but that seems to aggravate him still, and I suspect that he may also have a fructose sensitivity, and that pears are the culprit for why his diapers started getting better and then backtracked in the last few days. Since we have our appointment now, set for the 8th, I am going to re-introduce wheat products.

However, I'm very concerned about the testing process, especially since so many of you seem to indicate that testing is very unreliable in children under 2. I do not want to unnecessarily subject him to a biopsy; however, I realize that this may be the only way to get a positive dx, but if it's likely to come back negative at this time, I don't know if it is worthwhile to do it. In general, I'm just feeling very lost, and unsupported - I know that my husband and the grandparents think I'm probably overreacting, since he is such a bright, active boy, and there is no family history of Celiac's (though there is a history of thyroid issues on my side) but I just feel in my gut that something is wrong, and the only thing that fits his symptoms is Celiac's. I would love some guidance, or encouragement; I am willing to make any dietary and lifestyle changes necessary, I am a trained chef turned SAHM so I am willing to do what needs to be done to accomodate him, and I just would love to have other people tell me I'm not being a crazy mom.
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#2 beebs

 
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Posted 28 April 2012 - 08:55 PM

Hiya,

sounds similar to what we went through - down to the cystic fibrosis testing. There is a higher false negative rate on the bloods that on the biopsy - however biopsies like anything else -can be false negative too.

If you do want him to be tested you need to put him back on gluten (remember that just cutting out wheat does not mean that he isn't eating gluten which may be why he isn't getting any better if it is coeliac)

My son had a biopsy at 18 months - after negative blood tests - it came back borderline for coealic -not enough for a diagnosis - but not able to rule it out either, we went gluten free that day straight after the endo, at the end of the day- I knew we had nothing to lose, we had done all the tests - they were borderline, I had two choices - keep him eating gluten or go gluten free and see if it made a difference. He vomited every single day until we went gluten free and then stopped and that was it, no more daily vomiting. He still has issues - he is lactose intolerant and I feel I am missing something else food wise, but there is no denying that gluten was making him awfully ill.

I personally think that it is best to do all the testing while you can, if he does go gluten free - and he does have issues with coeliac he may never be able to tolerate a gluten challenge as symptoms often get worse the longer you are off it. And that is ok - if you are ok with not having a diagnosis - but for me, I fine it very frustrating not having an official diagnosis.

do you know if there are any other autoimmune diseases in your family at all? Diabetes 1, Lupus, RA etc??
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#3 Sesara

 
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Posted 29 April 2012 - 02:53 PM

Hiya,

sounds similar to what we went through - down to the cystic fibrosis testing. There is a higher false negative rate on the bloods that on the biopsy - however biopsies like anything else -can be false negative too.

If you do want him to be tested you need to put him back on gluten (remember that just cutting out wheat does not mean that he isn't eating gluten which may be why he isn't getting any better if it is coeliac)

My son had a biopsy at 18 months - after negative blood tests - it came back borderline for coealic -not enough for a diagnosis - but not able to rule it out either, we went gluten free that day straight after the endo, at the end of the day- I knew we had nothing to lose, we had done all the tests - they were borderline, I had two choices - keep him eating gluten or go gluten free and see if it made a difference. He vomited every single day until we went gluten free and then stopped and that was it, no more daily vomiting. He still has issues - he is lactose intolerant and I feel I am missing something else food wise, but there is no denying that gluten was making him awfully ill.

I personally think that it is best to do all the testing while you can, if he does go gluten free - and he does have issues with coeliac he may never be able to tolerate a gluten challenge as symptoms often get worse the longer you are off it. And that is ok - if you are ok with not having a diagnosis - but for me, I fine it very frustrating not having an official diagnosis.

do you know if there are any other autoimmune diseases in your family at all? Diabetes 1, Lupus, RA etc??


I know that there is more to gluten than wheat, including rye and barley, and that to truly cut out gluten, we've got some work to do around here to decontaminate the kitchen and make sure none of our other household products have any gluten in them. I only took cut wheat out of his diet for that week because I was frustrated waiting for an appointment with the GI - it'd been over 2 weeks since we started the referral process, and in the meantime, a friend had accidentally let him drink a bunch of milk once time and he'd had diarrhea for days - before that, he had been tolerating cheese and yogurt fine, and since then, he can't seem to handle any dairy. Grr. I was hoping maybe we'd see a bit of improvement in his diapers if he was off wheat for a few days...however, with the fructose and lactose issues, that sabotaged us. However, he is back on wheat as of today - I figure I might as well use up my flour while I can.

We really don't have any diagnosed autoimmune issues other than that my mom and grandmother both had to have their thyroids removed and get put on synthroid, during their childbearing years. So far, mine seems to be holding up, but I do have a diagnosis of IBS, which I know could mean I have some gluten issues. DH's family has a history of type II diabetes, weight issues, and gallstones, but I don't know if those would have any bearing on Celiac. However, we are both of Northern European descent, so I know the statistical likelihood of us carrying the genes are higher.
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#4 beebs

 
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Posted 29 April 2012 - 04:01 PM

That was a huge thing for me, one day I was fine with dairy - the next I couldn't tolerate it at all, I am fine with dairy now that I am gluten-free. The problem with this kind of testing is it can take ages, it took over a year from the time we first went to the Paed GI for my little one to the time he gave him an endo. :( I feel your pain - it is very hard watch your child sick and knowing that if you just took him of Gluten he may be ok. Good luck with it.
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#5 deb445

 
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Posted 03 May 2012 - 07:17 PM

All be it "alternative", applied kinesiologists can do non-invasive
muscle testing to help you determine what to avoid in the interim.
We visited with a NAET practioner team - this was our first intro. to
"alternative" medicine & we were desperate. I can't imagine where we'd
be sitting if we hadn't given it a go. I know some people may not
be open to this - I'm just sharing what has helped my family.
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Grain free for 2 years and now pain free.

A dedicated kitchen, a new passion for whole foods, Paleo inspiration

BLACK SEED and MSM has made a world of difference.

"Life isn't about waiting for the storm to pass, but about learning to dance in the rain..." ~unknown

#6 Sesara

 
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Posted 05 May 2012 - 11:06 AM

Well, we have our appointment with the pediatric GI on Tuesday afternoon. Hopefully, we will have some useful information to work with soon, fingers crossed. I am hoping that we'll do some bloodwork at least, so that we can check for antibodies and maybe run a genetic test.
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#7 Sesara

 
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Posted 08 May 2012 - 02:39 PM

Well, we had our appointment today, and Celiacs is at the top of the pediatric GI's list. He mentioned a couple of other things, Hirschsprung's disease and eosiniphilic gastroenteritis, but I looked at those and the symptoms just don't sound like him at all. We took a lot of blood today and will hopefully be getting our results back within a week.

Unfortunately, it seems that he is unwilling to even consider a diagnosis without a biopsy and is pushing hard for one fast. I asked to at least get our blood work results before we do the biopsy, so it is scheduled for the first week of June. At least by next week, we should start to get some answers.

I know that I've been expecting to hear that he was probably Celiac, but I can't help but feel a little shellshocked hearing it from a doctor. He told me that my son should weigh 28 lbs, when he just barely has finally inched past the 21 lb mark at 21 months.

I know that we can do a gluten free lifestyle, but I'm still mourning right now. As a chef from a foodie family, food traditions are very important. It kills me that I'll never get to make pierogies and Polish easter soup with rye bread for him. And that he'll be "that kid" at birthday parties. And have a hard time finding safe food when we travel. Things I know many of you have dealt with and are managing just fine, but right now, I just am heartbroken about it.
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#8 pricklypear1971

 
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Posted 08 May 2012 - 02:50 PM

Well, we had our appointment today, and Celiacs is at the top of the pediatric GI's list. He mentioned a couple of other things, Hirschsprung's disease and eosiniphilic gastroenteritis, but I looked at those and the symptoms just don't sound like him at all. We took a lot of blood today and will hopefully be getting our results back within a week.

Unfortunately, it seems that he is unwilling to even consider a diagnosis without a biopsy and is pushing hard for one fast. I asked to at least get our blood work results before we do the biopsy, so it is scheduled for the first week of June. At least by next week, we should start to get some answers.

I know that I've been expecting to hear that he was probably Celiac, but I can't help but feel a little shellshocked hearing it from a doctor. He told me that my son should weigh 28 lbs, when he just barely has finally inched past the 21 lb mark at 21 months.

I know that we can do a gluten free lifestyle, but I'm still mourning right now. As a chef from a foodie family, food traditions are very important. It kills me that I'll never get to make pierogies and Polish easter soup with rye bread for him. And that he'll be "that kid" at birthday parties. And have a hard time finding safe food when we travel. Things I know many of you have dealt with and are managing just fine, but right now, I just am heartbroken about it.


I don't know how to do the huggy things but here's a big hug.

Go ahead and mourn it. We all do.

Also, your ped has a point... in young children they are less likely to be positive on blood work. So, a scope may be the best way to get a definitive answer. Ultimately, a gluten-free trial is the best way to know.

And I hate to bring this up now... but you and his Dad need to be tested too. It is genetic. It's much better to do it now than later - because if you are gluten-light it can lessen the chance of an accurate test.
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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!

#9 Sesara

 
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Posted 08 May 2012 - 04:45 PM

I don't know how to do the huggy things but here's a big hug.

Go ahead and mourn it. We all do.

Also, your ped has a point... in young children they are less likely to be positive on blood work. So, a scope may be the best way to get a definitive answer. Ultimately, a gluten-free trial is the best way to know.

And I hate to bring this up now... but you and his Dad need to be tested too. It is genetic. It's much better to do it now than later - because if you are gluten-light it can lessen the chance of an accurate test.


I guess I don't see the point of us getting tested at this juncture. I hate to base it on this, but endoscopies are expensive and we each have a deductible with our insurance to meet, plus I'm currently 27 weeks pregnant so being sedated for an upper GI isn't even a good option for me. If my son goes gluten free, we'll be doing gluten free with him out of solidarity. So I'm going to pay close attention to my own digestion, and ask my husband to do the same - we both have some issues that could be explained by gluten, and we may get a genetic test if that's warranted, to see who might carry one of the associated Celiac genes. I strongly suspect that I may, given that I have that murky diagnosis of "irritable bowel syndrome", but my husband may too. Either way, if we feel better on a gluten free diet, we'll be sticking to it. We've discussed doing a Paleo diet for years anyways, so this might be a good time to go for it.

I worry for this new baby too based on the genetic suceptibility of Celiac, but based on the results of our genetic testing, I'll try to figure out what I want to do after they get here.
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#10 pricklypear1971

 
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Posted 08 May 2012 - 06:11 PM

I understand your hesitation.

All I can say is that the best defense is a good offense - and the more you know about the parents' Celiac status the easier it is to build a case for kids.

If one of you come up positive on serological testing, and your son doesn't, a doctor will be more likely to take Celiac seriously. Ditto for the baby you're expecting. What if your son's test come up in that grey range - something off but not definitive? What if his biopsy is negative but he shows a positive reaction to the gluten-free diet?

There's also the possibility that if you go off gluten as a show of solidarity you will discover you can't have it for your own health reasons - you wouldnt be the first it happened to. Then, you can't challenge without serious discomfort, especially pregnant.

You may not see the need for testing to confirm what you know by your body's reaction, but your kids may need YOUR diagnosis.

They don't automatically biopsy unless you have symptoms or come up positive on serological testing. They wouldn't biopsy you while pregnant.

All I can offer is my own experience. It is very hard to gluten someone up for testing when your house is gluten-free.

If you are concerned about the baby re: breast feeding you can always go on a gluten-free diet and provide gluten-free milk.

Genetic testing is not an assurance you do or do not have Celiac. People with the genes don't have it, and people without the genes do have it. Most labs report the most common genes found in the western U. S., and some people have genes found primarily from other areas. Ensure your genetic test shows all genes found - alpha and beta.
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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!

#11 Sesara

 
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Posted 09 May 2012 - 07:48 AM

I understand your hesitation.

All I can say is that the best defense is a good offense - and the more you know about the parents' Celiac status the easier it is to build a case for kids.

If one of you come up positive on serological testing, and your son doesn't, a doctor will be more likely to take Celiac seriously. Ditto for the baby you're expecting. What if your son's test come up in that grey range - something off but not definitive? What if his biopsy is negative but he shows a positive reaction to the gluten-free diet?

There's also the possibility that if you go off gluten as a show of solidarity you will discover you can't have it for your own health reasons - you wouldnt be the first it happened to. Then, you can't challenge without serious discomfort, especially pregnant.

You may not see the need for testing to confirm what you know by your body's reaction, but your kids may need YOUR diagnosis.

They don't automatically biopsy unless you have symptoms or come up positive on serological testing. They wouldn't biopsy you while pregnant.

All I can offer is my own experience. It is very hard to gluten someone up for testing when your house is gluten-free.

If you are concerned about the baby re: breast feeding you can always go on a gluten-free diet and provide gluten-free milk.

Genetic testing is not an assurance you do or do not have Celiac. People with the genes don't have it, and people without the genes do have it. Most labs report the most common genes found in the western U. S., and some people have genes found primarily from other areas. Ensure your genetic test shows all genes found - alpha and beta.


Well, I have my own GI, and depending on what results we get with testing, I'll probably be following up with them. But I guess my point is that since most GI's won't give you a diagnosis without a scope, and there's really no way for me to not go gluten free or very lite with DS, since I'm a SAHM and take cross-contamination very seriously, I don't know how we would get around that issue, pursuing a diagnosis for me, since like we both said, getting scoped right now is not an option, and won't be until some time after August.

I'm not concerned for the new baby until after they start solids. Even though I consumed plenty of gluten, my son gained like a champ from birth to somewhere between 6-9 months,around the time that solids started to become a regular part of his diet, and he was pretty much exclusively breastfed before that (we had one hiccup at 6 months when I temporarily lost my milk from pneumonia and the meds the were giving me). It's only since around 9 months that weight gain really has fallen off...he's gained slightly over a pound in the last year. So especially given that I will (theoretically) be eating gluten free, I'm more concerned about what we do to introduce gluten to the diet of this new baby, especially if we have a known genetic suceptibility and they have the same genes, and we have to go through testing with the new LO for all the same reasons as DS - this board has made me realize how much hard work it is to get an official diagnosis, and how sick our kids really have to be to get one. So it's frustrating to consider that I might have to make this new baby sick in order to protect them.
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#12 pricklypear1971

 
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Posted 09 May 2012 - 09:05 AM

You could do serology now, scope after the baby comes.

You may choose to stop at serology - who knows.

Ask your ped what s/he would give as a dx if tests come up inconclusive, there was a positive gluten-free trial/challenge but you or hubs were sero positive (no scope). You might be surprised.

You are correct you'll end up gluten light. It just happens. I tried to shove gluten down my son's throat for testing (gluten-free house) and it was hard to get that much in him, daily.

Some babies seem affected by gluten in breast milk, others don't. Sometimes it's dairy.... Each baby is different, but you know that. At least you know what to look for.

There are differing opinions and studies about introducing gluten. One will say wait, one will say do it...it's a call you have to make as a parent. Search PubMed and see what you find. There were posting on here about it, too.
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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!

#13 Sesara

 
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Posted 09 May 2012 - 09:32 AM

You could do serology now, scope after the baby comes.

You may choose to stop at serology - who knows.

Ask your ped what s/he would give as a dx if tests come up inconclusive, there was a positive gluten-free trial/challenge but you or hubs were sero positive (no scope). You might be surprised.

You are correct you'll end up gluten light. It just happens. I tried to shove gluten down my son's throat for testing (gluten-free house) and it was hard to get that much in him, daily.

Some babies seem affected by gluten in breast milk, others don't. Sometimes it's dairy.... Each baby is different, but you know that. At least you know what to look for.

There are differing opinions and studies about introducing gluten. One will say wait, one will say do it...it's a call you have to make as a parent. Search PubMed and see what you find. There were posting on here about it, too.


I will definitely ask at our follow up visit. I do appreciate the feedback - it's all a little overwheming, as I'm sure you understand, and I'm trying to do everything "right". All the while, I feel so unsupported from all sides - DH is at least coming around to the idea that we'll have to stop eating gluten at home, but it'll be up to him to avoid it at work, which I don't think he will, so at least he'll get his daily "dose" if it takes us a while to pursue testing.

Meanwhile, I need to find a new pediatrician, because ours didn't take me seriously at all, so I felt, since she ignored the height and weight drop off, and refused to do blood work for DS at all for Celiac's, though she did insist we do a fruit elimination diet, a CF test, and a parasite test on him before finally referring to a GI. My IL's seem to want to believe it could be anything but Celiac, to the point of suggesting that maybe we caused his issues by some other means - I know that they're not trying to be hurtful, but it's going to take some effort for them to "get it". And my mom really doesn't want to hear that maybe our family is a carrier for Celiac's - she and my grandmother both developed some sort of thyroid issue in their 30's and my mom had to have hers surgically removed, I don't know the official diagnosis, but I know there could be a relationship there, and she is not going to be happy with me if my tests confirm a genetic diagnosis, I just know it.
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#14 pricklypear1971

 
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Posted 09 May 2012 - 09:40 AM

Lol, yeah. Familial denial. Been there. Am there. We've all been there.

And yes, there's a thyroid and diabetes and gallbladder link.

I suggest not worrying about them - just worry about the kids, you, and hubs. Quite frankly you can't make them do anything, all you can do is give them info and let them make choices.

If one of them gets sick enough, they'll listen. Maybe.

Yes, it's overwhelming. But just breathe deep and you'll get there.
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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!

#15 pricklypear1971

 
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Posted 09 May 2012 - 01:15 PM

Timing of gluten intake in infant nutrition and risk of celiac disease autoimmunity.
Studies have shown that breast feeding at-risk infants at the time of gluten introduction may delay or prevent the development of celiac disease. The risk of developing celiac disease is reduced by prolonged breast-feeding, introduction of gluten during breast-feeding, introduction of gluten in the right “time window,” and introduction of gluten in small amounts. The University of Chicago Celiac Disease Center is partnering with the University of Maryland Center for Celiac Research on an international, multi-center study (25 centers in all) to further investigate the effects of early versus late gluten introduction in at-risk infants on the development of celiac disease.



http://www.curecelia...5_20_2011-3.pdf
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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!




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