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Just Waiting To Hear From The Doc....new Here

mommyetb

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mommyetb Apprentice
mommyetb
Posted

My 15 month old son just got out of the hospital on Firday. We spent 4 days there. He was admitted for dehydration and hypoglycemia (BS down to 46) caused from major runs that had been going on for a month and persistant vomiting. Our pediatrician had been running tests to try to find the reason but to no avail. After 2 ER visits they admitted him. They did a miriade of tests and everything is normal or negative. Ciliac is the only one that came back inconclusive. They had to send for another blood test using another diagnosis method. We are waiting to hear back about that. His igA was too low to read the origional test. His proteins are low, his sugar is low. THe more research I do about Celiac the more I just feel that this is the right diagnosis. My son has never slept through the night. Has always woke up every couple of hours (at best) crying and screaming and very uncomfortable cramping. His skin has always been SO itchy! He also has what was previously diagnosed as excema. He has been 23 pounds for 8 months now. Although he lost 1 1/2 pounds during the last month.

We went gluten free while in the hospital. As of today, 3 days off of gluten, he woke up one time last night to nurse then slept through until 7:30 this morning. He has been taking naps that are 1-1/2 hours long. He used to only sleep for 30 minutes at a time. His skin is so much better! He did not scratch his head raw last night! His vomiting has pretty much stopped and his poop was somewhat formed this morning!!! I am so happy. I am pretty confident that Celiac is what we are dealing with here. Is this too much information?

Anyway, we are on a giant learning curve here. We still arent diagnosed officially. I was looking for a place on this board to post an introduction and our story but I did not see one so I will post here.

Does this all sound like celiac? Are we in the right place? Anything else we should know? Thanks and sorry for the long post.

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Guest nini
Guest nini
Posted
Does this all sound like celiac? Are we in the right place? Anything else we should know? Thanks and sorry for the long post.

yes it sounds like celiac and it also sounds like he is also having POSITIVE DIETARY RESPONSE from being off gluten, which in my humble opinion, is the most accurate diagnostic tool.

His symptoms sound a lot like what my daughter went though.

One thing you should know is that the tests are extremely unreliable in children, and if you get a positive result, consider yourselve's lucky. Also, IMHO don't let them talk you into doing a biopsy on your son... he's been through enough. Keep him gluten free, and watch him thrive.

I have a "newbie survival kit" that I've put together if you want it, it's a collection of files of useful information for newly dx'ed Celiacs. e-mail me at nisla@comcast.net and put "request newbie survival kit" in the subject.

Another thing you should know is that everyone in your family should be tested for Celiac. It's genetic and he had to get it from somewhere. If any of your family come up positive then you will absolutely know for sure that is the issue with him, but it sounds to me like you already know the answer.

here is the complete panel of Celiac Tests that your family will need to request... keep in mind that a negative result is NEVER completely negative. Only a positive can be definitive.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

jerseyangel Proficient
jerseyangel
Posted

Hi and welcome! It sounds very much like Celiac to me. The positive response to the diet is a viable diagnostic tool. I agree that he has been through enough already. You are doing the right thing! I took the liberty of moving your topic to the "Parents of kids with Celiac" so you could connect with more people in your situation. Best of luck and my thoughts are with your son :)

cshaw Newbie
cshaw
Posted
My 15 month old son just got out of the hospital on Firday. We spent 4 days there. He was admitted for dehydration and hypoglycemia (BS down to 46) caused from major runs that had been going on for a month and persistant vomiting. Our pediatrician had been running tests to try to find the reason but to no avail. After 2 ER visits they admitted him. They did a miriade of tests and everything is normal or negative. Ciliac is the only one that came back inconclusive. They had to send for another blood test using another diagnosis method. We are waiting to hear back about that. His igA was too low to read the origional test. His proteins are low, his sugar is low. THe more research I do about Celiac the more I just feel that this is the right diagnosis. My son has never slept through the night. Has always woke up every couple of hours (at best) crying and screaming and very uncomfortable cramping. His skin has always been SO itchy! He also has what was previously diagnosed as excema. He has been 23 pounds for 8 months now. Although he lost 1 1/2 pounds during the last month.

We went gluten free while in the hospital. As of today, 3 days off of gluten, he woke up one time last night to nurse then slept through until 7:30 this morning. He has been taking naps that are 1-1/2 hours long. He used to only sleep for 30 minutes at a time. His skin is so much better! He did not scratch his head raw last night! His vomiting has pretty much stopped and his poop was somewhat formed this morning!!! I am so happy. I am pretty confident that Celiac is what we are dealing with here. Is this too much information?

Anyway, we are on a giant learning curve here. We still arent diagnosed officially. I was looking for a place on this board to post an introduction and our story but I did not see one so I will post here.

Does this all sound like celiac? Are we in the right place? Anything else we should know? Thanks and sorry for the long post.

Oh my. Your child, and you, have certainly been through a lot. I'm new here also. So you can take my thoughts with a grain of salt. In hindsight, I would not have had the endoscopy done on my 5 year old son. His blood work was positive, his symptoms were "classic" and he had had a positive response to a gluten-free diet. It is a hard call, when Docs are telling you what "should" be done. My son's endoscopy was traumatic - due to a fear of needles and the IV. He was scared. I think the the endoscopy only confirmed for the doctor what my husband and I already new in our hearts.

Good luck to you and your family

mrsnj91 Explorer
mrsnj91
Posted

I can't comment with opinions as we too are new but I just wanted to let you know that you are not alone. We aren't "offical" either. Kinda taking baby steps at the moment. But I have found this board and everyone on it to be so helpful and understanding. This was my stepping stone too and the support is great. Even for us non-offical people! ;)

Wanting to say welcome and hope you find your answers soon.

TCA Contributor
TCA
Posted

We were in a very similar boat as you for my now 3 year old son. He's been going through tests and more tests since he was 15 mos. He had 2 negative biopsies and inconclusive bloodwork, but his symptoms were classic. We finally just started him on the diet and couple months ago and the change has been nothing short of miraculous. His D is gone, he's happy, sleeping through the night, growing, he no longer complains of his back hurting. It's really amazing. We've even gotten him potty trained in the last week! It's much easier now that he doesn't have D 6 times a day.

I have a basic list of things about Celiac and foods my son will eat if you would like a copy. I keep it on hand for anyone who keeps him. If you want a copy, PM me.

I hope all goes well. I'm so glad he's already doing better. Just follow your gut on this, I should have a year earlier...

elfkin Contributor
elfkin
Posted

Welcome! Your story sounds a lot like ours! Our ds was diagnosed around 18 months old. He is 2 and a half now. Keep him gluten free. We had the itching, night problems, etc. Sounds like the same thing! The symptoms all come back if he gets gluten. There is a lot of support here! Ask whatever you need to and we will all try to help!

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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