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

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. 

Archived

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

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


  • Member Statistics

    • Total Members
      129,161
    • Most Online (within 30 mins)
      7,748
    Sandra McIlrath
    Newest Member
    Sandra McIlrath
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dora77
      Energy drink can has stains - potential gluten?

      By Dora77 · Posted

      It wasnt really eye catching, but they were small stains which looked like dried out liquid. I dont know if it was normal or shouldve been just completely clean. But if someone didnt pay attention, it wouldnt be noticeable.
    • RMJ
      Energy drink can has stains - potential gluten?

      By RMJ · Posted

      If there were stains or particles on a drink can in an area that would either contact the drink or my lips, I would wash that can whether or not I had celiac disease.
    • Bebygirl01
      Not Just Wheat, Barley and Rye Glutens that make us sick

      By Bebygirl01 · Posted

      You are on the money, but I should also add that Italian, French and other countries research shows exactly what I have said. Our FDA is behind the ball when it comes to this research and I am hopeful that Kennedy can straighten this out soon, albeit he is giving the food companies too long to just remove food dyes from our foods when in fact they have to remove all that in order to sell for example, in the UK as they aren't allowed such things. The food companies and the cola companies have also changed their formulas to have just sugar in them instead of corn gluten aka high fructose corn syrup and corn starch in them. Misinformation here in America is a very dangerous thing. I also have been grain free for a long time now and at no time can I even have the smallest amount of corn gluten -I recently got glutened from a supplement that claimed to be grain free yet upon further research I found that it had erythritol (corn sugar) in it and that is what got me sick for 7 days straight. I am not hopeful to ever be able to add back into my diet any of the grain glutens, but perhaps those who were only gluten intolerant might be able to, but for me being celiac, I have no hope in that. Thank you for the article, I will add it to my collection of research as I am collecting everything I can find on this subject and posting it on X as well as other places.  I also don't use psuedo grains i.e. quinoa as that also reacts negatively with my gut, so I am 100% a cassava/tapioca/arrow root girl and that is my go to bread replacement. There are some new items made with chicpea/green peas that are sold as rice alternatives, i bought one to try but haven't yet. So food companies are getting creative, but like you said, I am fresh whole foods and don't buy many processed foods, I make my own cheese, ketchup, pickles, jams, etc.
    • Dora77
      Energy drink can has stains - potential gluten?

      By Dora77 · Posted

      There were small spots (stains) on the drinking area at the top of the energy drinks can from the store that looked as the same color as milk — maybe oat milk (Hafermilch) or a wheat-based drink (Weizendrink), but I’m not sure what it was. There were also some particles that looked like either flour or dust, but not many. Could it have been a gluten-containing drink spilled onto the can or just regular small stains which I shouldn‘t worry about? Do you watch out for stuff like that or am I overthinking? Would it cause damage to a celiac?
    • Scott Adams
      Not Just Wheat, Barley and Rye Glutens that make us sick

      By Scott Adams · Posted

      This is such an important discussion! While corn gluten (zein) is structurally different from wheat gluten, emerging research suggests some celiac and gluten-sensitive individuals may still react to it, whether due to cross-reactivity, inflammation, or other factors. For those with non-responsive celiac disease or ongoing symptoms, eliminating corn—especially processed derivatives like corn syrup—might be worth exploring under medical guidance. That said, corn’s broader health impact (GMOs, digestibility, nutritional profile) is a separate but valid concern. Like you mentioned, ‘gluten-free’ doesn’t automatically mean ‘healthy,’ and whole, unprocessed foods are often the safest bet. For those sensitive to corn, alternatives like quinoa, rice, or nutrient-dense starches (e.g., sweet potatoes) can help fill the gap. Always fascinating (and frustrating) how individualized this journey is—thanks for highlighting these nuances! Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...