Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

16 Month Old Daughter


Tatum

Recommended Posts

Tatum Rookie

Hi everyone! I'm new here. I have a 16 month old beautiful daughter who I believe has Celiac Disease.

I have been in & out of doctor offices with her since she was about 2 weeks old. She has a protein allergy to both Milk & Soy. She has been sick despite being on hypo-allergenic formula ever since solids were introduced. She vomits atleast once a week, and has chronic diarreah, stomach pains and has never slept through the night. She rolls around in pain in her crib screaming.

I was told she had acid reflux & was giving her Zantac from about 3 months old until 6 months old when I took her off because of no change.

Over the last 6 months it has gotten progressively worse. Just in the last 2 months alone, she has been to the hospital 3 times, pediatrician twice, naturopath twice and a walk in doctor once. The hospital told me it was gastroenteritis, then they told me it was the rotavirus. I went to a naturopath to take some blood to see if she could find anything. The results took a month to come in so the hospital on the third try referred me to a pediatrician. The Pediatrician put her on a restrictive diet free of eggs, citrus fruits, tomatoes, dairy (I wasn't feeding her this anyway) and chocolate. I did this for 3 weeks, she had no change at the time but I kept on it.

The results of the blood test came back (skin prick, IgG). She tested positive for corn, eggs, chicken, cashews and almonds. I took her off those foods as well.

2 months later there is still no change. Back to the pediatrician who then refers her to an allergist but the appointment won't be until March 10. In the meantime he told me if I suspect it could be wheat, to take her off all gluten.

I ask "I thought you had to be eating gluten to test accurately for Celiac/gluten intolerance" and he tells me "No, it shouldn't matter if you eat foods or not... it will come up in the blood test". So now I'm really confused because I asked the naturopath the same thing since milk/soy came up negative in the IgG and she said I was right... since I wasn't feeding her those, they wouldn't be producing antibodies. Conflicting information...

Anyhow, I can't stand to have her on gluten any more. She weighs 20.5 lbs (same weight since 10 months old). Her allergist appointment isn't for a month... what should I do? The poor thing has been sick long enough & it took me probably 60 different doctors until one listened & referred me to an allergist. Right now I'm changing up to 10 diapers a day of watery diarreah. Her food literally goes in & comes out within an hour and most of the time it's not even digested.

I've been researching the heck out of Celiac & everything points to it (in my humble opinion). Stomach pains, diarreah, vomitting, weight loss/no weight gain, extremely dry skin & scaly scalp, corn/egg/milk/soy intolerances. Am I going crazy?? Do you think I could be right?

She tested negative for Wheat in the IgG. what does that mean?

I am in desperate need of someone to talk to who has experience with this. I can't stand to watch my poor daughter suffer any longer and I've been telling doctors that she needs to be tested for this for a year now but no one listened. :( thank you!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lillysmama08 Newbie

Hi everyone! I'm new here. I have a 16 month old beautiful daughter who I believe has Celiac Disease.

I have been in & out of doctor offices with her since she was about 2 weeks old. She has a protein allergy to both Milk & Soy. She has been sick despite being on hypo-allergenic formula ever since solids were introduced. She vomits atleast once a week, and has chronic diarreah, stomach pains and has never slept through the night. She rolls around in pain in her crib screaming.

I was told she had acid reflux & was giving her Zantac from about 3 months old until 6 months old when I took her off because of no change.

Over the last 6 months it has gotten progressively worse. Just in the last 2 months alone, she has been to the hospital 3 times, pediatrician twice, naturopath twice and a walk in doctor once. The hospital told me it was gastroenteritis, then they told me it was the rotavirus. I went to a naturopath to take some blood to see if she could find anything. The results took a month to come in so the hospital on the third try referred me to a pediatrician. The Pediatrician put her on a restrictive diet free of eggs, citrus fruits, tomatoes, dairy (I wasn't feeding her this anyway) and chocolate. I did this for 3 weeks, she had no change at the time but I kept on it.

The results of the blood test came back (skin prick, IgG). She tested positive for corn, eggs, chicken, cashews and almonds. I took her off those foods as well.

2 months later there is still no change. Back to the pediatrician who then refers her to an allergist but the appointment won't be until March 10. In the meantime he told me if I suspect it could be wheat, to take her off all gluten.

I ask "I thought you had to be eating gluten to test accurately for Celiac/gluten intolerance" and he tells me "No, it shouldn't matter if you eat foods or not... it will come up in the blood test". So now I'm really confused because I asked the naturopath the same thing since milk/soy came up negative in the IgG and she said I was right... since I wasn't feeding her those, they wouldn't be producing antibodies. Conflicting information...

Anyhow, I can't stand to have her on gluten any more. She weighs 20.5 lbs (same weight since 10 months old). Her allergist appointment isn't for a month... what should I do? The poor thing has been sick long enough & it took me probably 60 different doctors until one listened & referred me to an allergist. Right now I'm changing up to 10 diapers a day of watery diarreah. Her food literally goes in & comes out within an hour and most of the time it's not even digested.

I've been researching the heck out of Celiac & everything points to it (in my humble opinion). Stomach pains, diarreah, vomitting, weight loss/no weight gain, extremely dry skin & scaly scalp, corn/egg/milk/soy intolerances. Am I going crazy?? Do you think I could be right?

She tested negative for Wheat in the IgG. what does that mean?

I am in desperate need of someone to talk to who has experience with this. I can't stand to watch my poor daughter suffer any longer and I've been telling doctors that she needs to be tested for this for a year now but no one listened. :( thank you!!

You poor thing!! This sounds horrible, but you are right do not take her off gluten untill she has been tested. Gluten levels are normal from 0-19 anything over that is high. My daughters levels were 33, now they are 2 so i does change dramtically. I would make an appointment with a gas. dr asap to get a celiac panal or go to you pediatricain and ask for one. I would not wait any longer this could be doing some major damage to her insides! Hope you figure things and keep us posted! Good Luck

mommida Enthusiast

She needs to be reffered to a pediatric gastroenterologist.

She must consume gluten and have enough damage to be picked up on the tests.

She will be scheduled for an endoscopy with biopsy as soon as you start working with a pediatric gastro. Call today for the refferal. If that ped doesn't give you a refferal tell the office you are firing the doctor. That usually works, doctors egos can't take it. Truthfully if it doesn't work ~you needed a new ped already.

You better really trust this ped. gastro. It is the only way you will be able to hand over your baby girl for this test.

You will be able to rule out many things that could be part of the misery for your little girl. Once you find out what is causing this, you have the power to make it better. (Our situation later turned into EE. Medical mystery ~ doctors saying literally "I don't know", "We don't know". They also said, "Try this". Well the try this WORKED. Her last scope (on WED.) showed normal looking tissue!

Hang in there kiddo. I had to go through this 6 years ago.

Super big ((HUGS)) to you! :)

tarnalberry Community Regular

Since they referred you to an allergist, not a GI, I'm guessing your doc didn't even listen to the whole of your question, and said "no, you don't have to be eating it" because he/she was thinking about allergies, NOT celiac.

Honestly, since you've got four weeks until the allergist appointment, I'd put her on a strictly gluten free diet and see how she does. Was she ever able to do ok on JUST the allergen-free formula alone? If so, it might even be worthwhile to go back to that for a while, and then reintroduce solids one food at a time (no more than one a week) and look for reactions.

Granted, this is probably NOT the advice a doctor would give. But they don't like the dietary challenge as a test in and of itself all that often. :/

Tatum Rookie

Hi everyone, sorry it took me so long to reply. Thank you all for your responses. I called the Pediatric GI clinic at the CHildren's Hospital & was told there is a 2 year waiting list. 2 YEARS???!!! I am hoping i can get a referral sooner than later. I am going to go and see doctor number 48 or whatever it is tonight to try and get a referral for her.

I am out of options. I bought a bunch of gluten free foods & am going to start her on it myself and see what happens. It's very hard with a milk/soy protein, corn, poultry, eggs and nut allergy.... now I have to go gluten free too. :(

Please tell me this gets easier!!

LJ-Mom Rookie

Tatum,

Not sure where you live, but I found a contact at my local Children's hospital and called and called and called and called and called... and got in to see the pediatric GI specialist in 3 days instead of 6 weeks. There are doctors on call for "emergencies", so make it an emergency.

Get the name of a doctor from friends, relative, anyone and call, go to the office, do whatever it takes to be seen. If this is harder where you live, tell your doctor to send the labs in for a Celiac Panel for you now, don't stop the gluten until you've had the test but get the test now. Remind the doctor, nurse, admin that you have a child who is in pain.

Hope you get some answers soon.

Lora

Tatum Rookie

Ok so last night I took my little one to the ER and was told that because she isn't an "emergency" they weren't allowed to order any blood work.... however, the doctor did mention she had her own practice (she works in the ER when they are short staffed) and told me to come to her office on Wednesday and she will order a slew of blood work. I am supposed to write down all the things I suspect (or she has been tested in the IgG for) down and she will run the tests again. This means the milk/soy protein as well.

SO I guess something good came out of my 2.5 hour wait... I will update when I find out some results.

Is hair loss a side effect? She is losing her hair for the 3rd time now. She lost it twice before when she was an infant. My poor little baby :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Sometimes getting to the right ped helps. Then they can use the inside track for an earlier appointment. (The last ped appointment, he was considering hospitalizing my daughter and ran every screening test before he let us leave.)

It gets easier. Finding the right docotrs to work with is a major key. Changing the diet right now is an issue that can possibly block your child's diagnoses.

We are on a very strict diet here too. That gets easier too! There are more products every day to choose from. Have you checked out Enjoy Life and the Cravings Place products? We don't have corn to look out for at this point, but the products are mostly top 8 free.

Here is a chocolate cake recipe that can help for Valentine's Day or birthday parties.

Quick Chocolate cake

1 1/2 cups flour (I use Gluten free pantry)

1 cup sugar

3 Tbs. cocoa

1 tsp. baking soda

1/4 tsp. salt

Mix these dry ingredients with a whisk.

In the mixing bowl add these ingredients in order they are listed.

1 cup of cold water

6 Tbs. salad oil

1 tsp. vanilla

1 Tbs. vinegar or lemon juice

Mix until smooth.

Pour into a greases 9" square pan. Bake at 350 degrees for 30 minutes.

You can double the recipe for a 9 by 13 pan, but adjust your baking time for longer.

(I haven't found the best baking time yet.)

The vinegar or lemon juice reacts with the baking soda for the cake to have some lift and is used as an egg replacement for this recipe.

Gluten free pantry flour mix ingredients...

white rice flour, potato starch,

tapioca starch, guar gum, salt (may contain traces of soy)

ColleenNY Newbie

Tatum,

It sounds like your daughter is going through something very similar to what my daughter went through last fall. She was diagnosed with celiac disease in October when she was 17 months old. She needs a celiac panel, since you are right a gluten free diet wilI throw off the results. I don't understand why the ped won't write the script for the celiac panel, he's not drawing the blood. Do you know of any GPs or family doctors that others in your area have had good luck with if your ped won't write the script for the blood test?

Here is the link to the NIH Celiac Awareness page, you can show this to your doctor to see if that doesn't help.

Open Original Shared Link

If you end up having to switch to a gluten-free diet, some good resources to start out with factual information are Gluten-free Living and Living Without Magazines. Also, there IS some tasty gluten-free kid food out there and a lot of foods just ARE gluten free.

Just to give you a little hope, my daughter was not only failing to thrive but had fallen off the growth charts when she was diagnosed. Just 4 months later she is happy, healthy and gaining weight. Her disposition improved VERY quickly. In addition to the gluten-free diet, the GI put her on Prevacid until the damage to her esophagous he found during the scope healed.

Good luck!!

Tatum Rookie

Success! I went to the appointment this morning and she ordered tests for Celiac, glucose, CBC, iron and also a RAST for milk, soy, corn and eggs. I will have to wait a few days to get the results but atleast I got her the Celiac test!! It sure was hard hearing her scream when they were taking blood though!

Nightingale8472 Rookie

Success! I went to the appointment this morning and she ordered tests for Celiac, glucose, CBC, iron and also a RAST for milk, soy, corn and eggs. I will have to wait a few days to get the results but atleast I got her the Celiac test!! It sure was hard hearing her scream when they were taking blood though!

Sounds like you've finally found the right doctor! Best of luck to you and your little one!

Tatum Rookie

UPDATE: The results of the Celiac panel were negative. As were the IgE's for milk, soy, corn and eggs. She tested positive in an IgG for corn & eggs about a month before (?) & hasn't been on milk or soy products in a long time and no corn & eggs for a month..... so maybe thats why they were neg? Who knows...

Anyhow, I am out of options... and twice as frustrated.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,869
    • Most Online (within 30 mins)
      7,748

    Joyetta
    Newest Member
    Joyetta
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Shining My Light
      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
    • trents
      All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy.  It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
    • knitty kitty
      I understand your exasperation.  My doctors were totally clueless.  Me?  I couldn't believe it was so simple.  I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body.  It's about giving the body the nutrients it needs to heal.  Read my blog for more of my journey...  Do take the time now to make some changes.  It's a matter of putting on your own oxygen mask first before you do anything else.  I regret I didn't do more to take care of myself first.  It's amazing how quickly ones life can unravel if in poor health. Simple things you can do immediately that will help are: Stop consuming oats, dairy, and corn. Keep a food-mood-poo'd journal so pinpointing problematic foods is easier. No alcohol. Avoid nightshades.  Do cut back on or eliminate processed gluten free facsimile foods.  These are not nutritious.  They are not enriched with vitamins and minerals like their gluten containing counterparts.  They contain saturated fats and excess fiber that can be irritating to the digestive tract.   They are high in simple carbohydrates that promote Small Intestinal Bacterial Overgrowth (SIBO). Do focus on meat, veggies, fruit and healthy Omega 3 fats (olive oil, avocado oil).   Do make stews and roasts overnight in a crockpot.  Make small batches.  Leftovers increase in histamine the longer they are left.   Do talk to your doctor about supplementing with a B Complex and Benfotiamine (a form of thiamine shown to promote intestinal healing).  There are eight essential B vitamins.  They work in concert together like an orchestra, so they need to be supplemented together.  Taking extra thiamine and Benfotiamine have been shown to be beneficial.  Weight loss can be a symptom of insufficient thiamine. I believe you mentioned you were low in some vitamins. Can you tell me  which ones?  
    • Shining My Light
      @trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write.    The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it being celiac or not. I’ve come to learn the real issue with celiac is the damage, not the intolerance.    Gliadin Deamidated is another test I’ve seen that I wanted to get done. Also, the genetic testing. HLA-DQ2 and HLA-DQ8. Although my liver levels are not elevated now, I went through a time when they were. I would say maybe 7 years ago. I also had major GI symptoms at that time. They had ordered a EGD then but I chickened out. This makes me even more confused. I would think that if celiac were the cause my liver numbers wouldn’t have improved. Which again makes me think more of IBD being the cause of my TTG levels being elevated.  One thing that would make me motivated above all else is the neurological aspect. I’m still trying to dive deeper into that which has me the most interested. I think GI issues are an obvious symptom, it’s the connection in the rest of the body, particularly brain function that is most intriguing.         
×
×
  • Create New...