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

Could This Be Celiac?


Denise61

Recommended Posts

Denise61 Newbie

Hi all,

I am at the end of a week with my 9 year old son having stomach aches. On Sunday, it was severe enough to warrent a trip to the e.r. to check for appendicitis. We were able to rule that out, luckily. When he was four, he tested positive to Celiac. He had the endoscopy which showed that he did not have it. At six, he had some stomach problems and because of the earlier positive test, the G.I. revisited that possibility. He didn't seem to have it, but was found to carry the marker for it, meaning he could develop it at any time. It turns out that I do have it in my family background. At any rate, he has has pain right around the belly button all week and has had quite a lot of nausea with frequent attempts to vomit, and some diarhea. When he starts feeling better (usually around lunch time), I have let him have something to eat. Then by dinner, the pain is worse and he can't eat again. Yesterday we went to the doctor who sent us for an ultrasound, exrays, and blood work. Everything came back normal. In the afternoon my son felt great - really back to himself in appearance and activity level. We were so happy that we let him have whatever he wanted for dinner. It turned out to be a panini with a side of pesto pasta. He woke up sick again today. Then I started thinking about what he had had to eat this week, and the lunches were half sandwiches. I started to think about the wheat connection. We will be seeing the doctor again this afternoon, but it's driving me crazy not knowing what is going on. In your experience, how much time passes between consuming gluten and exhibiting symptoms? Could a child go from being symptom free to showing symptoms virtually overnight? If anyone has any feedback they would like to offer, I would be greatly appreciative! Thanks for your time.

Denise61


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



Celiac.com Sponsor (A8-M):



debmom Newbie

Your experience sounds a lot like ours with our daughter. She was checked for appendicitis 7 times in several months. None of her tests showed celiac but when she stopped eating gluten, her stomach pain began to subside slowly until it went away completely. Her intestinal problems started when she was an infant, but it wasn't until she was a teenager that she started having terrible pain and other troubles often related to gluten. Her glutenings affect her within a few hours generally, so her gastroenterologist says that she has a wheat allergy, not celiac. That would explain why she has negative blood tests. But it doesn't explain everything to us. We just know she is better off of gluten and wheat. I would definitely try eliminating gluten and see if he isn't better.

Juliebove Rising Star

My daughter had her appendix out at age 3. Afterwards the Dr. said the appendix was fine but she had Peritonitis. I'm not so sure. After that, more stomach problems. Each time the Dr. (different one) said she had strep and that in small children it often presented itself as a stomach problem. The only things I could get her to eat/drink when she was so sick like that were yogurt, fruit juice and chicken broth or plain chicken broth with rice that I made from scratch.

Then at age 6 she was diagnosed with food allergies. 7 things, including wheat and gluten. So he could have an allergy.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,355
    • Most Online (within 30 mins)
      7,748

    Nebulae77
    Newest Member
    Nebulae77
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Lynnard
      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
×
×
  • Create New...