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

Child with celiac disease and ongoing symptoms

Wibbli
 Share

Recommended Posts

Wibbli Newbie
Wibbli
Posted

Hello all,

My 6 year old daughter was diagnosed as celiac in April this year following a year of heartburn which started after a bad stomach bug. With this bug (which started in Feb 2021) she had awful headaches, sickness, generalised pains, vomiting and stomach aches. 
After a year of back and forth to the GP, a blood test in April this year showed a TTGA of well over 200 so a biopsy was not required (my local hospital wrote to the childrens hospital in Bristol in UK and they said a biopsy was not needed due to high TTGA).

My daughter hasn’t had a headache since October 2021 but has recently had quite a few (30th August, 4th Sept and 9th Sept). She had covid back in the first week of August (2022) and only symptom was a headache. 

We are trying to be very careful with her food (my son is going for a biopsy as he had a TTGA of 49) so we have gluten in the house but I try to be extra vigilant with my daughter.

My question is this; can children / people with celiac disease still experience headaches when they cut out gluten? She was at a party last week and the party host had gluten free food but she ended up with awful stomach ache afterwards so I was worried there was gluten crumbs in contact with the food.

Her head pains are generally mild and are located above her right eyebrow, forehead or left temple and last a few minutes and are not severe. 
 

thank you. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)
1 hour ago, Wibbli said:

Hello all,

My 6 year old daughter was diagnosed as celiac in April this year following a year of heartburn which started after a bad stomach bug. With this bug (which started in Feb 2021) she had awful headaches, sickness, generalised pains, vomiting and stomach aches. 
After a year of back and forth to the GP, a blood test in April this year showed a TTGA of well over 200 so a biopsy was not required (my local hospital wrote to the childrens hospital in Bristol in UK and they said a biopsy was not needed due to high TTGA).

My daughter hasn’t had a headache since October 2021 but has recently had quite a few (30th August, 4th Sept and 9th Sept). She had covid back in the first week of August (2022) and only symptom was a headache. 

We are trying to be very careful with her food (my son is going for a biopsy as he had a TTGA of 49) so we have gluten in the house but I try to be extra vigilant with my daughter.

My question is this; can children / people with celiac disease still experience headaches when they cut out gluten? She was at a party last week and the party host had gluten free food but she ended up with awful stomach ache afterwards so I was worried there was gluten crumbs in contact with the food.

Her head pains are generally mild and are located above her right eyebrow, forehead or left temple and last a few minutes and are not severe. 
 

thank you. 

Welcome to he forum, Wibbli!

One thing you need to realize is that celiac disease generally doesn't occur in a vacuum, isolated from other medical problems. Celiac disease may not be the cause of these other problems but one presentation of a deeper immune system dysfunction that simultaneously creates other medical issues that present along with celiac disease and so not necessarily a response to gluten ingestion. It would be fair to say that whereas many medical problems reflect an impaired immune system, in some ways celiac disease is the opposite. That is, it reflects a hyper vigilant immune system that often, in time, generates other autoimmune medical issues. 

All that to say that if gluten is totally avoided you may see improvement in these other symptoms (such as headaches) but not total release. Gluten and celiac disease may only be a part of the immune system dysfunction puzzle but it is a piece you have much control over.

Headaches/migraines can also be triggered by many other things including a variety of foods and environmental agents. I suffer from them myself and I believe the cause of it is "histamine intolerance" in my case. This is another issue that is common to the celiac community. 

The other thing to look at is foods that mimic a celiac reaction. Most commonly, dairy and oats (even glute free oats). These two food contain proteins similar to gluten that generate that cause problems for many celiacs. About 50% of celiacs are going to have issues with dairy.

Edited by trents

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

  • 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. Jess270
      - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions...
    2. cristiana
      - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

      I missed this article when it was first put up. It is interesting to read, as my old neighbour who sadly passed away a few years ago was a trainee midwife during WWII. Bananas disappeared from the shops in Britain during the war, but she told me that those that did get to the UK were kept back for infants with coeliac disease. I didn't realise that...
    3. trents
      - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    4. GeoPeanut
      - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease, and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with...
    5. trents
      - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,060
    • Most Online (within 30 mins)
      7,748
    Vaughn Zellick
    Newest Member
    Vaughn Zellick
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...