Jump to content

  • 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

Symptoms After 5 Years Gluten Free

GFmom144

Recommended Posts

GFmom144 Newbie
GFmom144
Posted

I need help. My 8 year old daughter has celiac and has been gluten free for about 5 years. A few months ago she ate a piece of gluten by accident. She threw up that night for hours and then seemed to feel fine the next day. About a week later she got sick with a virus and fever. Since then she has been complaining her stomach hurts. We took her to the GI doctor and they did blood work. Her number came back a 38 and she is suppose to be under 20. Since she ate gluten could that have made her numbers spike? If not and since her belly is hurting everyday off and on could she be getting gluten from something she is eating or cross contaimanation? Everything she eats says gluten free but I am now wondering. My 4 year old eats regular food but we are very good at keeping it away. Could she realy be getting traces from him? He washes his hands after eating it. We have done good for so long I am truely at a loss of why her belly still hurts. Any advice would be helpful.

Thanks

Very confused mom

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

Does your daughter kiss anyone who eats gluten? Does she wear chapstick? Does she use a shampoo that has gluten? Does her brother eat gluten and then play with something that your daughter then plays with later? Does she play with Play Dough?

Have you considered establishing a completely gluten-free household? Your daughter's health sounds very fragile....and I sure hope you can find out what is causing the problem.

Mizzo Enthusiast
Mizzo
Posted

Think back to when it started . Was something new introduced to her diet (even something labelled gluten-free). How about a new soap, shampoo or toothpaste. Could her sibling be using her toothbrush?

Have you checked cabinets and frig for cross contamination problems. maybe over time crumbs etc.. built up and are a problem!

If you can rule out cc completely you may have to check if new allergies have popped up.

GFmom144 Newbie
GFmom144
Posted
  • Author

Does your daughter kiss anyone who eats gluten? Does she wear chapstick? Does she use a shampoo that has gluten? Does her brother eat gluten and then play with something that your daughter then plays with later? Does she play with Play Dough?

Have you considered establishing a completely gluten-free household? Your daughter's health sounds very fragile....and I sure hope you can find out what is causing the problem.

She does wear chapstick but I have called them and they say they are gluten free. The shampoo was new and could contain gluten so we have stopped using it. Yes may son does touch her stuff but he usually washing his hands. I think I am going to have to make it all gluten free at least until she is better or my son is older and can do things better. My question if she is getting traces would that of damaged her intestine so that is why it hurt? Or is she getting something every time she says it hurts. I am making myself crazy trying to figure it out. Thanks for your help.

GFmom144 Newbie
GFmom144
Posted
  • Author

Think back to when it started . Was something new introduced to her diet (even something labelled gluten-free). How about a new soap, shampoo or toothpaste. Could her sibling be using her toothbrush?

Have you checked cabinets and frig for cross contamination problems. maybe over time crumbs etc.. built up and are a problem!

If you can rule out cc completely you may have to check if new allergies have popped up.

She did eat the new rice Krispers that say they are gluten free and we got new shampoo. I got rid of both of those things. Could it of damage her intestines and now it take time to heal? Would a new allergy make her numbers be up? I am starting to wonder about soy or corn. The other day she ate corn on the cob and her belly really hurt afterwards. I do not know about the toothpaste if her brother has tried to use it? Thanks

mommida Enthusiast
mommida
Posted

We went down a path like this before.

My daughter went gluten free when see was 17 months old. Life was good then when she was 6 she had a very bad virus. (high fever and a lot of vomitting, she even vomitted blood and had a nice 4 days in the hospital)

Every day she was complaining her stomach hurt, had gluten like symptoms ("D", headache, tired all the time, dark circles under her eyes, but then she was vomitting up to 5 times a day like she had severe GERD). Made myself crazy looking for gluten and cross contamination. Back to the specialist for an endoscopy with biopsy. The list of usual suspects at this point are Celiac damage, H. Ployri., congenital defect/ physical damage, hernia, parasites, Eosinophilic Esophagitus or Eosinophilic activity in any area of the GI track, and this list went on.

My daughter was diagnosed with Eosinophilic Esophagitus. That was a little over 2 years ago. We have made adjustments to her diet and she is doing well.

That's our story. My advice, get back in to the ped. gastro. get any other issues that might be going on diagnosed so you can get healthy again. :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Ednamay
      - Ednamay commented on Scott Adams's article in Winter 2026 Issue
      1

      Why Celiac Diagnosis Still Takes Years—and How to Change That

      Why do humans become intolerant to Gluten?
    2. imdoodah331
      - imdoodah331 commented on Scott Adams's article in Additional Concerns
      4

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      I'll be adding my wheat based snack plates to the donation box.
    3. Scott Adams
      - Scott Adams replied to Roses8721's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      gluten-free Oatmeal

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      22

      My only proof

      Well said, @Mari!
    5. knitty kitty
      - knitty kitty replied to Ginger38's topic in Related Issues & Disorders
      10

      Shingles - Could It Be Related to Gluten/ Celiac

      Hi, @Ginger38, I've had shingles in the past. I understand how miserable you're feeling. Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten. The virus lives dormant in the nerves on the left side of my face. It causes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.