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Pls Help - Non Typical Symptoms? Mood "disorders"


Maureen73

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Maureen73 Apprentice

Hi all - I'm hoping you can help me out. I was diagnosed with celiac disease last July. My daughter is 4 and my son is 11 months. I asked my pediatrician if my children should be tested for celiac disease, but he said it was not necessary as they are not showing any GI symptoms. Emma is a bright, outgoing child but has recently has had severe "meltdowns" which include biting, hitting, kicking, and are out of control. I'm a stay at home mom, we discipline our kids, but don't hit, she gets lots of love & attention and my husband and I can't understand what is going on. I know this is the age where kids are testing their limits, but it seems like more than that. Like she can't control herself.

Did anyone's children have behavorial issues and were diagnosed with celiac disease?

I'm thinking I should get her tested. She does not have any of the typical bowel issues but I feel like something is out of sorts.

Thanks for listening. I feel so helpless and just don't know what is wrong and where to turn.

Maureen


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Guhlia Rising Star

My daughter hasn't shown any celiac symptoms yet, but I can relate this to my own life experiences...

I was diagnosed with borderline personality disorder years prior to my celiac diagnosis. I suffered through major depression, severe mood swings, anorexia, and a variety of other scary things and was on and off of many anti-depressants, mood stabalizers, anxiety medications, and sleep aids. After going totally gluten free, my symptoms vanished! At that point I had no gastro problems whatsoever. My only "tell-tale" signs were the big belly and the super skinny body, which without gastro problems would probably have never led to my celiac diagnosis. If you were diagnosed with celiac, I would strongly recommend both of your children getting tested, even if they are symptom free. I'm planning on having my daughter tested. If my pediatrician won't do it, then I'll take her to my family doctor to have the testing done. This is important to me. There are way too many things that could be damaged (including her self-esteem, her grades when she hits school, her stomach, her body) if she has celiac and it's left untreated.

I wish you the best of luck in your journey. Let us know what happens.

Merika Contributor

It could be celiac. It could also be food allergies/sensitivities. My son becomes a completely different child when he ingests a minute amount of soy. He is also sensitive to egg. I was unknowingly celiac while pregnant with him, and I wonder if this is why he is sensitive to these foods (I am too). I've posted the list below from another list I'm on, that lists some indicators of food allergies (not anaphylaxis stuff, just the normal kind).

Hth,

Merika

Generally... you're looking for any of these things:

* red ring around anus

* rashes of any kind

* skin bumps or raised, rough areas

* rough spots behind the ears

* bright red cheeks

* dark rings under the eyes

* glassy eyes

* constipation

* diarrhea

* snarts (constant tiny poop dribbles)

* really frequent peeing for the age they're at

* bad attitudes

* fatigue

* irritability

* head pounding

Tony'sMom Rookie

I also think you should have your children tested. If the ped won't do it, take them to your GI. They don't have to be having symptoms to have celiac. I've had all my kids tested and am in the process of retesting my daughter due to some issues she's having.

As for the behavioral aspect, it's certainly possible. Age 4 is a difficult age, they want to be independent but still can't do everything themselves. I do know that my son can be impossible if he ingests gluten so I do think there can be a link.

Good luck, I hope you get some answers soon.

kempy99 Apprentice

Oh Maureen, I feel for you! I am going through a very similar instance with my 3 1/2 year old son. Our cases are slightly different in that neither my husband nor I have tested positive (well, we have not been tested at all) for Celiac, but my son has gone through testing and although he did not have the "Celiac" gene, he did have a high positive score for "gluten sensitivity" which the doc termed as "Celiac-like disease". Basically he has to follow the same gluten-free (and casien free - tested positive for dairy intolerance as well) diet in order to stay healthy. He had many of the GI symptoms, and this is what prompted us to do the testing. He's been gluten-free for 4 months and CF for about a month. Heis physical symptoms have all but disappeared and I would consider him very healthy in that respect, however the behavioral issue seemd to have worsen! He is an emotional rollercoaster!!! Happy laughing playing nice with his 5 month old sister and the next he'll breakdown over the tiniest little thing. I'm not sure what to make of it. Is he still getting some hidden gluten or casien or possibly some other food that he's allergic to that does not shoe physical signs, but create behavioral disarray (i.e. soy)? Or is it just a part of being 3 1/2? It does not seemt o be better or worse at any time of the day (I was hoping to make a link between days that he's at daycare or days that he did not get a nap (being over tired)) but to no avail, he's over emotional no matter what the circumstances of his day are. I'm really at a loss as to what to do. My husband and I are hoping that its just a phase and we are going to try to ride it out, but if things don't improve in a couple weeks, we may need to seek some professional help for him. Good luck Maureen. Let us know what you find out about your little girl, and if anyone else has any stories to share that may shed some light on this, please do - and thank you to those who already posted a reply. I learn so much from this board and also get a great deal of comfort in knowing that we're not the only ones out there dealing with this and that it can be overcome.

Merika Contributor

Oops, I forgot to copy these symptoms too of food allergies.

Merika

* night sweats

* cradle cap (which I suppose is a rash of some

kind, but people might not realize it)

* picky about food (for older babies/toddlers)

* change in temperament/demeanor suddenly (ie., sudden separation and

stranger anxiety for the first time overnight)

* frequent spitting up

* mucousy poop

* chronic runny/stuffy nose

* Excessive ear wax

Guest elysealec

I was diagnosed with celiac disease two years ago. I have three children that I had tested. I had no issues with any of them or so I thought at the time. The only one who came back with positive bloodwork was my then 7 year old daughter who had always been big for her age and had NO digestive, skin, dental issues, etc. My pediatrician thought there must be some error and we decided to retest. At the same time, I read an article by Dr. Ivor Hill out of Baptist Hospital in Wakeforest, NC. It stated learning and behavioral issues may well be the only way celiac disease comes out in a child. I scheduled a biopsy with him and she had significant damage already. She went off gluten and her behavior was markedly improved within a month and a year and a half later, she is a different child. Her pediatrician was dumbfounded and was open to looking at celiac disease with a new eye. Hope this helps.

Vicki


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taweavmo3 Enthusiast

Sorry, I'm a little late in replying to this. I would definately get your daughter tested, and even if it comes back negative, give the diet a trial run to see if her mood improves.

My daughter gets extremely emotional if she has a gluten accident, that is the part I dread the most b/c I know we are in for at least two weeks of moodswings. We have also made her casein free too, as she was starting to have major meltdowns again and the only change was her increase in dairy. She had been eating alot of cheese, yogurt and milk lately, so we cut all that out and she improved within a few days.

The moodiness is one of the hardest parts of all this to deal with. It's hard to decipher it is just a phase, they are testing their limits, or if it is indeed a food issue and they really can't help themselves. Emmie seems to tune out and lose all control sometimes, and all forms of discipline that worked with my other kids are lost on her. She gets SO incredibly angry, it doesn't seem normal to me. Even my husband and I have argued about it on occasion, since he isn't here all day and sometimes thinks maybe I'm just too easy on her. But, now with casein cut out, she has improved so much that we now figure it is mostly food issues.

Good luck to you...I hope trying the diet helps her. I know how frustrating the moodiness can be. I hated to cut out casein from Em's diet too, but I was at the point that I would have stood on my head just to keep her from flying off the handle and screaming over absolutely everything!

aikiducky Apprentice

Tamara, that's interesting what your saying about her getting incredibly angry. I've noticed a difference myself with gluten and casein, gluten makes me more like depressed and irritable, but casein will make me just MAD. I just get this rage that comes from nowhere and even I know I have no reason to be angry about anything but I still feel incredibly angry. It's weird.

Pauliina

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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