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. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

      Oh, my dear! Get off that Fairlife chocolate protein shake! That's got milk in it! Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance. Damaged villi are incapable of producing lactAse, the enzyme...
    2. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes. Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible. Yes, take the magnesium at breakfast, too. I take my Benfotiamine and TTFD Thiamax and B Complex at the beginning of breakfast. I take the magnesium after I finish...
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade. Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice...
    5. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      6

      Severe severe mouth pain

      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think, I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748
    sai4a
    Newest Member
    sai4a
    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

    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes.  Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible.   Yes, take the magnesium at breakfast, too.   I take my Benfotiamine and TTFD Thiamax and B Complex  at the beginning of breakfast.  I take the magnesium after I finish eating breakfast.  Yes, I take NeuroMag.  
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
×
×
  • 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.