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

Other Foods Causing Problems....


BeckyW

Recommended Posts

BeckyW Contributor

My daughter recently tested positive for Celiacs on bloodwork, neg biopsy and has 2 genes for Celiacs. She has been gluten-free for over 2 weeks and has made some progress some days and then some days she seems worse. I believe there are other foods causing problems as I have read many people have problems with. She has been dairy free now for about 1 and 1/2 weeks. I believe fruit may also be a trigger. My problem is what is left for her to eat? I am not sure what to feed her any more. She has no energy and is very thin. Can anyone please give me ideas and suggestions on what foods are "safe" for her to eat?

I am not getting much help from the doctors. The gastro said it is IBS and all the foods he wants her to eat and the ones causing the problem. I have learned more from people on this board from any doctor we have been too! Thank you for sharing your stories and your encouragement.

Becky


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Well, as you may know already, there can be hidden sources of gluten in foods, skin/hair care products, and contamination from foods being served to others or while stored in the fridge.

Other possible problematic foods can be soy, dairy, tree nuts, peanuts, corn, yeast, sugars...the list is practically endless. It depends on the individual, but those are very commonly found to cause reactions.

What sort of symptoms is she experiencing now? Is it the same as while on gluten?

BeckyW Contributor

She is experiencing basically the same symptoms she had when she was eating gluten but not as bad. She had abdominal pain, gas, bloating, C and feels nauseous. I don't think she is getting glutened, we have read every ingredient, called companies before using products and are very careful with food preparation. I think there is some other food triggering the symptoms and not sure how to go about finding this out.

She doesn't want to eat or drink and is having problems with the dehydration. I have many food intolerances and I am pretty sure she also does.

If anyone has suggestions on how to figure this out I would sure appreciate them!

RiceGuy Collaborator

Many recommend keeping a food journal. Mark down everything she eats, the time, etc. Then when symtoms arise, you'll have a better picture of things, and will hopefully see a pattern.

If she has had any of those items recently that commonly cause reactions, I'd start there. Go for the top allergy suspects first (unless she hasn't eaten any of it). Oh, and don't overlook nightshades, like tomatoes, potatoes, etc. Seems those can also be a problem.

Ursa Major Collaborator

Hi Becky, and welcome to this board. I recommend you follow the link in my signature on lectins, it sounds to me as if they could be the problem. Rice and eggs cause me to have almost the same symptoms as if being glutened, and so does soy. Potatoes cause similar problems as well.

Anyway, you would do well to read what it says, and try eliminating lectins to see if it helps.

I hope you figure it out!

AndreaB Contributor

Soy and dairy are probably the two biggest aside from gluten. Corn is also a problem for many. If you have the funds I would suggest enterolab (Open Original Shared Link) to see if she has an intolerance to dairy, soy, eggs or yeast. That is all the test for aside from gluten issues and genes. If it proves to be too much of a challenge right now to do an elimination diet you could get allergy testing to try and nail down foods she may be reacting to also. I had allergy testing done which led me to get the family tested by enterolab. Anything I put in the signature area is active sensitivity from enterolab testing (aside from my allergy results).

Welcom, the people on this board are great! :P

wozzy Apprentice

Has she gotten any other allergy tests? Scratch tests, blood tests, ect.

Also, sometimes it can take awhile to start feeling better because of the damage gluten does. 2 weeks may not be enough time to be completely better. Also, depending on how familiar you are with gluten, you could be unknowlingly feeding her stuff with gluten in it, either from the product itself or from cross contamination.


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



Celiac.com Sponsor (A8-M):



BeckyW Contributor

Thanks for all your responses. We are currently doing a food journal but I cannot connect any foods to the symptoms. She is always worse at night after dinner, before bed. I think she needs more healing time. She has been allergy scratched tested a few months ago but no foods were positive. My food allergies/intolerances that I react digestively do not always show up on the scratch test either. We just went to a new allergist/ENT who sent her blood out to a lab in Maine. This is the only lab he trusts for the RAST testing - I think it is Allutest or something similar. We are waiting on the results. They take about 3 weeks.

The ENT also gave her a cavemans diet to try. Fresh meat, fruits and veggies and no processed food. I think we will cautiously try this but watch the fruits as they seem to be a trigger. I did buy some babyfood for her to eat too. Hopefully that will give her some nutrition.

Thank you again for your help and please let me know any other suggestions!

Archived

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

  • 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. - Dakota01 commented on Scott Adams's article in Winter 2026 Issue
      1

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting

    3. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting

    4. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,465
    • Most Online (within 30 mins)
      7,748

    Catherine17
    Newest Member
    Catherine17
    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

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.