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

Almost 4 year old with symptoms even after being on a gluten free diet

AKDad

Recommended Posts

AKDad Newbie
AKDad
Posted

I'll try to keep this short. My daughter has always been in the lower percentile on weight since she was about 1 years old. She was born a healthy size but the first week we had her, we had to return to the hospital and have her stay under some UV lights because of Jaundice.

She's always been a picky eater, and she always wants to drink something instead of eat. I started to take notice of her stool. Even as a baby her stool was always a light color, almost off-white or pale yellow. It was runny that way, or even perfectly formed it was pale and yellow. My wife didn't really see anything to be concerned about. When she turned three and she continued to be lower on the weight chart, and her stool consistently was this weird pale color, I basically convinced my wife to get a blood test done. Also, our child's behavior was incredibly bad. She had mood swings, tantrums, uncontrollable crying for no reason. It was hell. After the test, she tested TTG IGA over 100, which was almost a confirmation of Celiac. Relief, we finally figured out the issue. We quickly switched her to a gluten free diet and she started to see minimal improvements, then sometimes she would have a normal stool (brown, healthy) and she seemed better, but then as if for no reason she would go right back to having weird mood and her stool went back to being yellow and pale.

She's almost 4 years old now and she's been "Gluten free" since October of 2017. She's had maybe a week of improvement but she continues to have symptoms of pale stool, gas, irritability, poor sleep, attitude, tantrums, bad behavior etc. She never once complains that her tummy hurts, but she still doesn't like to eat. We monitor what food we give her, but I'm starting to worry that there is something else going on. She doesn't have jaundice, it's very clear that she doesn't. Her eyes are bright white and her skin is normal, her urine is clear to yellow. She has tons of energy and is happy for the most part, but she is prone to wild mood swings and is very defiant. She is also very smart and learns very quickly, but something is gnawing at the back of my head that something is very wrong with her and I can't sleep well at night.

Basically I just want to know if there are any other people out there that suffer with this or have a child with this that see this kind of "relapse" in symptoms even after going gluten free. We even eliminated dairy in fear that it was also causing issues and she continues to have problems. We make her food every day and avoid cross contamination and it doesn't seem to make a difference.

 

Maybe it's the products we're feeding her? The gluten free bread or Vans waffles? Maple syrup? Peanut butter?

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

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

You could get a Nima sensor and go nuts testing the food she typically eats. It's possible she's getting cross contamination even though you think you're being super careful. Or maybe she's getting gluten at a friends house. If your house isn't 100% gluten-free there could still be a problem there that you that you missed. It's  got to be hard to know if you're being careful without instant feedback.

 

Good luck and welcome to the forum.

Maddiecl Explorer
Maddiecl
Posted

Hello, I am so sorry to hear that your daughter is feeling unwell.  I'm new the Celiac diagnosis myself, I was diagnosed in November of 2017 at the age of 24.  I know I'm quite a bit older then your daughter but I can relate to many of her symptoms and the "rollercoaster" of a healing process she has had.  I too am not feeling as well as I hoped I would at 5.5 months gluten-free.  I also experience days and weeks of feeling fairly good and having fairly normal BM's and then go back to being sick for no apparent reason.   Last week I had a repeat Endoscopy and Colonoscopy to put my mind at ease since I had met my deductible.  Everything came back normal and my villi looked a lot better but not healed.  I was reassured that after all of the tests I have had there was nothing going on with my GI track other than lingering symptoms of the celiac disease and I needed to be patient with the healing process.  It is incredibly hard to be patient when the healing process is this slow and painful.  I just wanted to tell you this story so you know this process really can be long and miserable and maybe (hopefully) that is the only reason your daughter is still so unwell. The fact that she is now having SOME brown healthy looking BM's now is a good sign!

AKDad Newbie
AKDad
Posted
  • Author

Thanks for the replies. We are taking her into her 4 year appointment soon and having the blood test done again and having a full blood panel to check lived, pancreas etc just to be sure. I hope all it is, is just the fact that she's getting cross contamination and not something worse. I'm a huge worry wart.

 

I'll update when I can.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Healing can be a slow process and hopefully that is all that is going on.  Do be sure to read the 'Newbie 101' thread at the top of the Coping page. It has a lot of good info to make sure you are doing all you can to keep her safe. Are you giving her gluten free oats? If you are using products with them stop for now. Wait until she is symptom free before reintroducing them. Some celiacs react to oats the same as they do to gluten. It is also a good idea to hold off on foods with soy as that is another item we can have issues with for a while.

I hope she recovers soon but it can take some time. Make sure the rest of the family gets tested for celiac as well. It is not uncommon for other family members to need the diet even if they don't seem to have obvious symptoms.

gluten-free Survivor Rookie
gluten-free Survivor
Posted

Hi,

It sounds to me that your daughter may have other food allergies or there is cross contamination occurring somehow not matter how careful you are.

Cross contamination can occur in the field that the crops are planted and not necessarily the processing facilities. For that reason,  I  have opted to go grain free.

Lactose Intolerance is also a symptom of Celiac disease so removing dairy products from her diet was a great thing. Also be very careful of those Gluten-free process foods since they contain ingredients that does not go well with everyone who has Celiac disease.

Corn can also cause problems and make sure you use grass fed beef and cage free eggs!

A food allergy test is a great idea because it would tell of other foods that may be causing the immune system to react negativity.The good news is that she is young and her recovery will be shorter than someone who 

P.S You show have her vitamins level checked for deficiencies as well! 

Ennis-TX Grand Master
Ennis-TX
Posted

I would say go over the basics with teh 101 thread maybe you missed something, there is a huge learning curve with this disease. Is the toaster 100% gluten free? Is the House gluten free? Did someone spread peanut butter on gluten bread then dip the knife back in the jar?
https://www.celiac.com/forums/topic/91878-newbie-info-101/
We do suggest a whole foods only diet, honestly most gluten free foods...are starchy/sugar nightmares of compromise to simulate gluten products. I personally have to go with grain free and starch free versions for a other disease that developed as a complication. This leads my gluten-free products to be healthier and less processed... check ingredients and try to keep processed gluten-free foods as treats not staples. Whole foods are best....OH I know when I do not feel well...I prefer blended meals...I really just prefer nut based porridge (Sweet with extracts and stevia, or savory like congee, High in fats and good way to put on weight) and mushy microwaved omelettes with nut milk, blended steamed veggies soaked gluten-free nut based breads, and nut flours/butters....Just seems to sit better then solids.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,956
    • Most Online (within 30 mins)
      7,748
    BLF
    Newest Member
    BLF
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Vaccines

      By Beverage · Posted

      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      Facial pain

      By trents · Posted

      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Facial pain

      By Mnofsinger · Posted

      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
×
×
  • Create New...