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

Stomach Pain With Undiagnosed Celiac


KimKF

Recommended Posts

KimKF Apprentice

We are awaiting the biopsy results for my daughter's Endoscopy (yesterday afternoon). The GI Dr. saw what appeared to be irritation in the stomach lining, appeared to be a small amount of subtle flattening of the villi and a subtle change in the duodenol (sp?) folds. He can't say for certain, we await the results. She has been Gluten Free for 4 days, with little or no food. Still incredible cramping of her stomach (center) - not constant, as she was great this morning, but had her first real light gluten free meal at breakfast (meal included dairy). Then significant cramping followed with still a great degree of bloating. Is this common for the healing process? I figure she has been dealing with these episodes for 15 years, not going to change that quickly. I know that each person is different. Just want to hear that we aren't experiencing anything outrageously unusual. Fortunately, she has had NO diarrhea in 48 hours (no food to speak of either, except this morning). She is afraid to leave the hospital, without having a bowel movement and in that much discomfort, only to end up back there or running around trying to manage pain and diarrhea (already been 3 weeks of that).

The Internist at the hospital, where we finally went to get on with the diagosis, said it is unusual for you to feel this much cramping at this point with Celiac. What???

OH, they put her on a Gluten Free diet in the hospital, but did not suggest going dairy and/or lactose free. What is anyone's opinion on that... dairy and/or lactose??

Thanks much!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It is usually advised to limit dairy when first diagnosed or avoid it completely. The same area damaged by celiac is the area that produces the enzyme we need to digest dairy and many can go back to eating dairy after we heal. Having cramping after consuming dairy is not unusual at all, especially in the beginning.

KimKF Apprentice

It is usually advised to limit dairy when first diagnosed or avoid it completely. The same area damaged by celiac is the area that produces the enzyme we need to digest dairy and many can go back to eating dairy after we heal. Having cramping after consuming dairy is not unusual at all, especially in the beginning.

Even hospitals, nurses, internists and general GI's don't have a handle on this, do they??

Skylark Collaborator

Even hospitals, nurses, internists and general GI's don't have a handle on this, do they??

Nope. I'm so sorry to hear she's still sick and afraid to leave the hospital. *grumble stupid doctors* *grumble stupid gluten challenge idea*

To be honest after seeing a friend react badly to a hospital "diabetic" diet, I'd be afraid to even eat a hospital "gluten-free" diet.

I couldn't tolerate dairy at first and I also got stomachaches from soy. For me the reaction was cow casein rather than lactose and I was able to eat some goat cheese without trouble. Once I had been on the diet for a while, I was able to add the dairy and soy back and now I eat them fine.

Is the hospital offering easy-to-digest foods like rice, bananas, and applesauce? If not, you may want to bring her some.

KimKF Apprentice

It is usually advised to limit dairy when first diagnosed or avoid it completely. The same area damaged by celiac is the area that produces the enzyme we need to digest dairy and many can go back to eating dairy after we heal. Having cramping after consuming dairy is not unusual at all, especially in the beginning.

The doctor's are making her feel as though it is unusual to have this much discomfort. True? I thought each person was different and after 15 years of this, your body does not heal overnight, especially if they don't tell her to be dairy free.

Does that mean just lactose free? "Cause we know of an incredible nutritional shake that is gluten and lactose free (has 1/3 of your daily nutrients for 21 vitamins, minierals), but is made with 1% milk (still contains the cassein). She LOVES it. Is it ok that it still has the cassein?

I would love an answer, if you would like to email me at kkfellows@comcast.net. I will be bringing the drink up her up to her now.

KimKF Apprentice

OH, my gosh!! I love all you people here!! Unbelievable helpful!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review
    • Wheatwacked
      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
×
×
  • 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.