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Toddler Has Celiacs?
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my 2 yr old has always been small. she was born at 37 wks 4 lbs never on the growth chart. She's 27 mos and weighs 20 lbs and is 30 inches tall. Her general pediatrician sent her first to endocrinology PEDs - all those tests came back normal, then they sent her to a gastro ped and they did an endoscopy and found "minimal blunting" of villi but all bloodwork came back negative which I know is not reliable at this age. We have gone gluten free for almost 4 months now but have not noticed ANY improvement in her weight gain or appetite. She never had any classic celiac GI symptoms like diarrhea or vomiting, only constipation and poor weight gain (again she's always been small) and was never a good eater even with her formula as a baby. Other than the "minimal" blunting of villi, the endoscopy did not show anything out of ordinary (like reflux or anatomical obstruction that would cause pain for to not like eating which is what they were originally thinking). My question is could there be a mis-reading of the biopsy by pathologist/gastro dr? Also can something else have caused the minimal blunting? Shouldn't we SEE some improvement by now if gluten is the culprit for her lack of weight gain and meager appetite?

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Assuming you have removed all sources of contamination (sneaking crackers from other kids, other care providers inadvertently feeding gluten, commercial playdoh, access to grain-based pet foods, shared kitchen equipment like toasters, shared condiments like peanut butter, and so on), then yes, I would expect to see improvement (not necessarily complete, of course) in a 2 year old. Are you certain there is no cross contamination?

Rarely, casein can cause the same problem - damaged villi and weight issues. Unless you used a special, expensive, formula that broke down the casein, or used a soy based formula instead, and if she's now consuming dairy, that is a (again, rare) possibility. As a parent of a toddler, it'd probably be the next thing I try, myself. And then other food and environmental issues.

But I wouldn't stop working with the doctors in case there is something else going on.

Is there any family history of celiac disease?

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We have removed all gluten in our house. Daycare confirms all gluten-free and they are super careful when it comes to food allergies because of the legal liability that's what they told me and I have observed them during their lunch times it is gluten free. Toddler still has constipation and not a great eater. She's been at 19-20 lb mark for almost three months (she fluctuates when she gets a cold and doesn't want to eat).

Gastro PEDs dr wants to do another scope to see if there's been any healing but how can there be if no symptons have improved?

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I know the daycare is saying they're being careful (and I am sure they're trying) but trust me, your daughter is definitely being exposed to cross contamination. If there are other kids in the same room eating gluten foods, there are crmbs everywhere. And my son has been known to snatch bits of crackers and cookies off the floor and pop them in his mouth in a few nanoseconds. And playdough is a staple at those places.

If we have him home for a week or more, we see significant improvement in his bowel movements.

Could you take a week or two and keep her home to completely control her food intake and environment?

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    • Depression / anxiety issues
      i am wondering if those who get that initial "rush" of a day or twos relief of symptoms are "flying" on adrenaline?  wonder about adrenal fatigue?  not sure that is considered a real thing in western medicine... just a thought.  and you return of sym suggest a glutening.  Anything new in the diet?  even a new package of an already  checked product?  soap and shampoo need to be checked, or used very carefully.  is wife still eating gluten?  if so make sure sh is not bringing it to you.  kisses are nice, but make sure she brushes first, lol skipping products that are "made in shared buildings"  for at least a while. take the B12 on an empty stomache
    • Depression / anxiety issues
      Excellent. The chances are your body won't absorb some of this however so get as many good B sources in your diet as possible in addition. Get some sunshine as well, I know it does rain sometimes in Melbourne but believe me on that score you do a lot better than the poms.   Try and note these positive things, it's so easy when you're down to forget them. There will be more to come. Imagine yourself climbing a mountain. There are points at which you have to travel laterally or even down in order to follow the right path but your overall trajectory is upwards. You're actually lucky to have found it now at 28 with so much time ahead for healing and enjoying the fruits of it.  For me the gluten reaction is the initial cause of the depression but once that's removed it doesn't automatically lift like magic. Whilst the brain fog lifted soon on gluten-free diet, (there was a physical perceptible feeling in my head whilst I had that, a kind of thickness sort of like wearing a diving mask all the time that distances you from the world), the longer term depression isn't so easily shifted. I think this is because there are negative pathways that have been reinforced over many years. That's what living in a constant state of anxiety can do. It wrecks your self esteem which isn't magically repaired as your diet changes, sadly! As my physical symptoms lifted but I still felt depression, if on a different level, I realised I'd have to heal my mind as well as my gut. So I'm currently seeing a counsellor and it is helping. Not there yet though Yes I also get this and the mental side for me is also by far the worst side of it. I used to think I may die every time I got the chest pains but that wasn't as bad as feeling like shit 24/7 or having to fake a good time when feeling awful inside.  The single best thing about realising my gluten problem was that it explained that the underlying cause of that depression and anxiety was physical, not a defect of character, just some bad luck in the makeup of my gut and immune system. Hope that knowledge helps you also, when the anxiety strikes recognise it for what it is. A misdirected fight or flight response to an internal attack on your body.  Have a look at some cognitive behavioural therapy techniqes for challenging negative thoughts, that may be helpful? CBT has a very good success rate here in UK, better than anti depressants or talking therapy I think and it focuses on the practical,.  As you realise there's a load of bulls**t in society about how we view and discuss mental health. Don't buy into it. A lot of 'strong' people out there are simply bottling up their suffering through misguided pride. If people stigmatise you they're doing you the favour of letting you know they're not worth bothering with.  I got a lot of support on here when I was in your position and I'm sure you will too. I wish you the best of luck and I'm sure you'll be seeing more improvements in the weeks and months to come.      
    • Celiac - How many symptoms can there be?
      As you doubtless know now, there are so many ways celiac can present, here's as big a list as I could find online. It would probably be quicker to list what isn't a factor For me personally, nausua, check, left sided back hip pain (my laymans theory here is that celiac is affecting the sciatic nerve which runs from lower back down leg) , check, chest pain also - but for me this comes in short bursts more I guess like heartburn - I thought I was having heart attacks... Check to the rest too... And, for what its worth, other things like being prone to bronchial infection oh hell yes.  I'm currently in the glutened / affected by something group myself so I can only share the advice I've been given. Start a food diary and see if you can track down anything diet related that may be affecting you. Eat as clean as you can, ease up on alcohol, just try and give yourself the best chance of recovery. Have a google of 'heal my gut' diet tips too, you're in the recovery phase at the moment. All the best, at least there's comfort in knowing you're not alone!   Matt  
    • Depression / anxiety issues
      Thanks for the advice Matt, I will be sure to take it all onboard. It's really good to talk to others that have had similar experiences. I'm currently upping my b12 and also taking a additional (gluten free) multi and b complex, also omega 3s and Vitiam D3. I had been noticing small improvements that I forgot to mention in my previous post. I noticed that I fall asleep now much easier than before going gluten-free, I also have moments where my body feels more calm, then blood in my stool has stopped I haven't had any in 10 weeks. My mind was constantly fixated on negative thoughts for the past 2 years and they slowly began lifting from all day negative thoughts to maybe half a day of negative thoughts if that makes sense, but this pass week and a half they have come back, I'm also finding my self very nervous again around other people I'm hoping this will pass. The anxiety / depression is the worst symptom for me I would not wish it on my worst enemy, if that went away I would be the happiest man in the world. I found it very hard to talk to people about my mental health issues at work before I lost my job as I found some people stigmatise me and don't understand or really care, but I figure i don't need narrow minded people like that anyway, and as a man its hard to open up but my wife is very supportive and encouraging. Thanks again for the advice really apricate it
    • Depression / anxiety issues
      G'day Chris and welcome to the forum. You have found what I think is the single best resource on the web for advice, support and understanding for this condition. There is so much info here it's difficult to know where to start, but that's what this thread is for, please check it out. I think I got the recommendation for 'Real life with Celiac Disease' by Dennis and Leffler there, I'll second that, there's a lot of very useful info in there which helps to answer a lot of your questions. May be useful for your partner also. Chapters are short and informative so you can dip in and out.  There will doubtless be more advice to come from others with more experience but there's a few things which occur. Firstly, 10 weeks is very early days. Your body has been under an assault for many, many years. Your immune system has been working overtime and like so many others you've only reached diagnosis after reaching a crisis point. You are now healing but it won't be instant and it won't be without ups and downs, speedier and slower phases.  Second, being strict on gluten is essential, but it's only one part of the puzzle. You also need to eat really healthily and try to heal your gut. As you remove gluten you may find that your body starts telling you that other foods are also an issue. Don't panic, it doesn't mean that will always be the case. But you need to approach the next 6 months as a period where you're giving your body the easiest ride possible. That may mean taking probiotics, bone broths or it could also mean avoiding dairy or other foods, at least until your body has had a chance to heal. If you think you may still be getting gluteny effects keeping a food diary, noting what you eat, when and how you feel would help to track down any further issues.  I too battled through the anxiety, had an all too brief moment of bliss as the diet kicked in, then faced a bumpier recovery period in the weeks that followed. It gets easier but it's still difficult for me from time to time. I tried to articulate some of this recently here, it's a long read but maybe some of it will strike a chord. It will get better and you will become better equipped to deal with it. If you're like me you'll find other things getting better over time that you would never have thought to connect to gluten. Now, I've been exceedlingly nice here and not mentioned the England Rugby drubbing but I can feel my self control beginning to slip. So I'll leave it there   Matt
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