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Newbie With 2 Yold Just Diag

mom2twoangels

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mom2twoangels Apprentice
mom2twoangels
Posted

Hi,

My daughter has just been mostly diagnosed with celiac. Her blood work came back at 100 not sure what that means then referral to a ped GI. He did a scope on her today to confirm and he said it looks like it - but he won't be 100% sure until he gets the labs back. He was sure enough to have us start on a gluten free diet today. He made us feed her gluten the last couple of days for the testing.

I am kind of confused though as her pattern doesn't seem to follow some of the stories I see here. I have another child with Ige food allergies so I have always been very aware of what she was eating and what her reactions have been she has had food intolerances to Rice and Oat (basically she throws up if she eats them) I removed these from her diet before she was 1. She has always grown well slimmed down some from a pretty rounded baby to a regular sized toddler - ped said that was normal with more movement etc.

All of a sudden she started having very bad tummy troubles that came and went but contined to get worse over the last 5 weeks. A week prior to this my son and I had the stomach flu so I thought maybe that was the issue. But when she was still throwing up randomly a week later I took her to my ped who thought she might be constipated so we did xray / miralax for a week or so. Go back and she has quit throwing up but still more and more tummy pain and constipated off and on. Then the ped thought either one of about 7 things that she could test for by blood work or just reflux - we decided to try a reflux med for a week before doing the blood draw. She seemed better for several days after the appt so I delayed the meds. Then syptoms came back worse than ever started meds - but dr said it would take a week to work - so waited the week when it was still not helping we went for the blood draw. She was going down hill quite fast in my opinion she lost 1 1/2 pounds in just 2 weeks I though think that was a ton for a girl who only started out at 26 lbs. No energy at all, made me carry her etc. Does this seem normal or well normal for celiac to anyone?

I guess I am worried since today is our first day gluten free if this will really solve her problem she is so bony now and her tummy sticks out so much, bags under her eyes - it is hard to see in my child that was really 100% about a month ago. I am praying that this works.

Thanks for reading sorry it ended up so long

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

I think it's great that you're getting this checked out. I don't doubt that your daughter is having some food intolerance problems... hopefully she's going to feel a lot better within the next couple of days!

I just wanted to add another idea... could she be getting her two-year molars? My three-year-old is VERY active, but while her molars were coming in she was really clingy and irritable. :(

Darn210 Enthusiast
Darn210
Posted

Thin limbs and distended tummy is a "classic" celiac toddler look. In fact, I had a couple of my daughter's doctors (NOT the one that diagnosed her) doubt her diagnosis because she didn't "look" like a celiac kid.

Everything that you've describe can be attributed to Celiac. Kids are quick healers. If this is her problem, and it sounds likely, she should bounce back quickly.

Welcome to the board. You've found a wonderful resource!! Ask lots of questions. There a lots of people here with years of experience to help and offer advice.

ShayFL Enthusiast
ShayFL
Posted

Yes, if it is Celiac you have caught it early and the gluten-free diet can turn her around quickly.

Just be aware that if she responds POS to the diet, a lot of doctors will then want to test, BUT because of the diet the test will come back NEG.

So if you want an official Dx she MUST continue to eat gluten and get a full celiac panel and a scope.

taweavmo3 Enthusiast
taweavmo3
Posted

I don't think there's really any "typical" Celiac....we all have different stories, some kids deteriorate fast, some slow...some are totally symptom free but still have damage and come up with a positive diagnosis due to family history, short stature, anemia, or even a skin rash.

I feel like my dd is pretty much classic Celiac, but she still never had diarrhea or vomiting before she was diagnosed. She was always just so clingy and irritable, and since about 18 months she stopped gaining weight. Around age 2, her belly really started to protrude, she had thin arms and legs, and just looked unhealthy. She didn't get diagnosed until she was 3. It was only after being 100% gluten free for a few months that she started reacting stronly to gluten....now she vomits, gets D, runs a high fever, the whole gamut of symptoms. But other kids don't react strongly at all, each kid is SO different.

I hope you get some answers, and some response with the gluten free diet. I didn't realize how sick my dd was until she went gluten free...it was like I was getting to really know my child after 3 years. It's amazing when you see them get well and feel good for the first time in a long time.

Gotta run, kids are throwing water out of the tub, lol. Hope that helps, you came to a great place for help!

saraphym Newbie
saraphym
Posted

It does sound like some sort of intolerance to something in her diet. My son (3) was diagnosed a few days ago as well. I took him in for his 3-year-old check up and they did a blood draw right then. He has always been very pale with sparse hair and low weight, but I always attributed that to his Ectodermal Dysplasia, so when they said that they wanted to test him for Celiac, I was a little surprised. Still, they were very cautious and wanted to make sure and check him out thoroughly (ED is rare and they are pretty awed / careful with him - LOL)

I wonder why the blood test isn't a more common approach, though? Maybe I don't know all the particulars, being new to this as well, but it seems to me that if there were any question at all, they could do the test, right?

Anyway, you know your kid better than anyone, and they are all different, as said previously. My advice would be to just ask lots of questions, and do what you think is right for your child. You are the expert on your kid, so do what you think is right for her and you can't go wrong!

Lots of luck - keep us posted!

mom2twoangels Apprentice
mom2twoangels
Posted
  • Author

I wanted to say thanks for all your comments and encouragement. We are starting day 4 of Gluten free (she had her scope on Friday) and she does seem slightly better. Her tummy seems slightly less distended she seems to be playing a bit on her own vs. being held all the time and eating a bit more. I am still waiting on the call with the test results, but wanted to say thank you to everyone. My shopping expiditions have been quite a challenge and I will probably post a couple of questions on the product forum.

Thanks!

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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