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

Persistent gastro symptoms despite gluten-free diet

nicolecox.01
 Share

Recommended Posts

nicolecox.01 Newbie
nicolecox.01
Posted

Hi everyone. I'm wondering if anyone has any ideas or advice that might help us. My 9 year old daughter was diagnosed with Celiac 3 years ago, at age 6. She has been completely and strictly gluten free since, as well as diary free. She would have several days here and there of tummy pain but overall was doing well. She also has several food allergies including peanuts and tree nuts, and bananas. Several months ago she developed worsening stomach symptoms, including daily cramping, nausea, constipation (despite treatment), overall unwell feeling, pale skin, random vomiting etc. It has been going on daily for several months.     Initial test results including ultrasounds, bloodwork and thyroid are all normal. Has anyone experienced something similar, and if so, were you diagnosed with another condition? Any ideas or suggestions would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted
On 7/21/2018 at 8:59 PM, nicolecox.01 said:

Hi everyone. I'm wondering if anyone has any ideas or advice that might help us. My 9 year old daughter was diagnosed with Celiac 3 years ago, at age 6. She has been completely and strictly gluten free since, as well as diary free. She would have several days here and there of tummy pain but overall was doing well. She also has several food allergies including peanuts and tree nuts, and bananas. Several months ago she developed worsening stomach symptoms, including daily cramping, nausea, constipation (despite treatment), overall unwell feeling, pale skin, random vomiting etc. It has been going on daily for several months.     Initial test results including ultrasounds, bloodwork and thyroid are all normal. Has anyone experienced something similar, and if so, were you diagnosed with another condition? Any ideas or suggestions would be greatly appreciated.

Have you been keeping a food journal?   Often times recording every thing that is consumed will help pinpoint problematic foods or food types (greasy foods, cold foods, etc).  Also record any symptoms after eating (pain, mood changes, etc).

Celiac Disease causes malabsorption which results in malnutrition.  Celiacs can have problems absorbing enough vitamins and minerals.  

Vitamins A, D, the eight B vitamins, and magnesium are often low in Celiacs.

Magnesium can help relieve constipation.  

Pale skin and vomiting can be symptoms of B12, folate or niacin deficiency, or iron deficiency.  Screening for nutritional deficiencies might be warranted.  

Hope this helps and I hope your daughter feels better soon.

 

tessa25 Rising Star
tessa25
Posted

Did they retest her celiac blood tests that failed at diagnosis? They should be normal now.

  • 1 month later...
LilyR Rising Star
LilyR
Posted

I hope she finds help and relief soon.  For me, I am noticing other than gluten, I seem to have to avoid all items with corn and soy ingredients.  And wow, do those ingredients sneak into a lot of foods! Especially the corn, because there are many names of ingredients you would not know are derived from corn.  (But yet it's tricky,because some people say they can handle foods with soy lecithin in them, but some can't. So stop those foods, and once she is better you could give them a try and see.)  I guess also dairy can be a problem for some, and also oats, even the ones that are claimed to be gluten free, but they are still a grain, and so that bothers some people.  I read an article online that said people who can't eat gluten often can't eat corn, soy, oats, or dairy.  (Sometimes dairy can be added back in later, once the stomach heals.) Can you see a nutritionist to see if they could help you with food and meal ideas?  Also maybe get back with the stomach dr to make sure it was not a false diagnose and there is something else going on, or if she has celiac, but also some other issue as well that they have missed?  Also, it can take a few months of going gluten-free before you start feeling any better.  Or are there any specialty hospitals in close enough driving distance you could try? I am so sorry she is still suffering so much.  It is very hard, and also I am sure so hard for you too, to see her like that.  It will get better, but it seems there are times when it takes many more appointments and tests to get it all figured out.  Hang in there!!  I know it's hard though. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,348
    • Most Online (within 30 mins)
      7,748
    Dcac294
    Newest Member
    Dcac294
    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

    • knitty kitty
      Confused About Results

      By knitty kitty · Posted

      @Ginger38, Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.   I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.   We're supporting you through this difficult time.  
    • knitty kitty
      This Roller Coaster Ride Needs to Stop

      By knitty kitty · Posted

      @Ginger38,  I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!   I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.   I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.   I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did not want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine. I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal.  Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet.  You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!
    • maryannlove
      nuts.com -- no longer Celiac safe?

      By maryannlove · Posted

      Though trying to diligently eat gluten free, recent bloodwork was bad so searching for culprits.  Eat lot of (preferably mixed) nuts.  Most allergen labels say may be processed on equpment that also processes wheat, etc.  Finally found ONE kind (unsalted mixed) at BJ's.  Wessley (their store brand) that did not contain that warning.  Says in large letters "A GLUTEN FREE FOOD."  Well, all nuts are a gluten free FOOD!  Have been eating and now wonder if this is intentionally decieving.  So stopped eating until find culprit.  Nuts are so good for protein and fiber (especially if trying to not eat meat).  'Tis so frustrating.  Thanks to above, I'll look into Tierra Farms.   
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Fascinating! This was very helpful, thanks for sharing
    • maryannlove
      Yasso frozen yogurt bars - be careful

      By maryannlove · Posted

      Despite being very diligent about eating gluten free, my recent bloodwork was bad.  So been on a mission to find the culprit(s).  During Covid my daughter found "certified gluten free" Yasso mint chocolate chip yogurt bars at Costco.  I was elated and have been eating them since.  When delving into possible culprits I discovered that the boxes with 12 bars at both Costco and BJ's no longer say "certified gluten free."  But the boxes with 4 bars at groceries and Target still say "certified gluten free."  Contacted the manufacturer and was told to go by what the box says.  So guess different machinery is used.  Was also told they were in the process of changing boxes.  Will be interesting to see what that brings.  
×
×
  • Create New...