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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.