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

Migraines

JodiC

Recommended Posts

JodiC Apprentice
JodiC
Posted

I have Celiac (diagnosed finally in 2005 after years of illness) and am wondering how to tell if your child has it? I can't remember back when I was his age what kind of symptoms I was having. My twin boys seem to be plagued lately with headaches and vomiting. In one of the boys, the headache comes on very fast, causes him to vomit uncontrollably and then he falls into a very deep sleep. I was also plagues with migraines in my pre diagnosis days but was in my early 20's. They are only 6. The last time they were tested for Celiac was when they were 3 going on 4 and the tests came back negative. They also get pretty irritable at times and seem to not be able to control themselves without alot of nagging from me and my husband :). I should mention he also see "fireworks" before they hit. I'm assuming this is the aura. I don't know if I should have them retested. I thought Celiac went dormant until puberty for some reason, but I suppose that is not the case for all children. Any help would be appreciated.

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

Celiac.com Sponsor (A8-M):


2kids4me Contributor
2kids4me
Posted

Celiac does not go "dormant"...you can develop celiac at any age and once it starts - its there for life.

My daughter had migraines so bad - she would stagger down the hallway grabbing the walls. She would cover her head and ask for the lights to be turned out - but they were already off.

Once we discovered she was celiac - and went gluten free...the migraines stopped. Its one of the symptoms we see if she gets glutened.

Try going gluten free and see if they stop. Tests can be false negative in children.

Sandy

darlindeb25 Collaborator
darlindeb25
Posted

If I knew then, what I know now, I would have tested my kids with gluten free just to see if it helped. My kids all suffer headaches, I too have one everyday of my life. My son Nick was on beta-blockers at the age of 6 for migraines and he still has them, not as bad as when he was young. His son and daughter, 8 and 7, both have migraines and Colin is on beta-blockers now. My son Joe had headaches that came on instantly and he would scream, tell everyone to be quiet, shut off the lights, he would cry and if I could get him to calm down and rest, he would be asleep in minutes and when he woke, he would be fine. My daughter has migraines and my 2 older sons have headaches, not migraines really. I have to wonder if it isnt gluten related. My moms family all had headaches like that, but she doesn't think gluten is a problem for her. My dad is the celiac, yet my mom has gone pretty much gluten free with him and her headaches have lessened. My sister accuses me of thinking everything is caused by celiac disease and she is celiac too. Am I wrong? There seems to be a connection to me!

natalie Apprentice
natalie
Posted

Yes, yes, yes!!!! I have had headaches my whole life. I remember being in public school going to the nurses station. I would lay in a completely dark room, the pain was excruciating. Eventually I would vomit fall asleep and feel a little better when I woke up. This all happened while I was 6+ years old. The headaches were a major symptom of my celiac.

Natalie

mamatide Enthusiast
mamatide
Posted

My 8yo DD has a lot of headaches and belly aches. My 6yo is Celiac. I'm gluten intolerant (no intestinal damage but definite mood-related symptoms and gastro stuff when I eat it).

Back to my 8yo. She had headaches every day for about a month. I thought maybe her glasses, school, whatever. But then we went gluten-free for a week and the headaches went away. (We're gluten-free at home completely - she was eating gluten in her lunches at school) then she ate it and they came back. She most recently went almost 2 months gluten-free and ate (regular) pizza last night. We're waiting to see if any of her symptoms come back.

That's the problem with a gluten-free trial I guess. Waiting and watching for symptoms that may or may not appear.

I'll let you know if the headaches come back.

mamatide

Karen B. Explorer
Karen B.
Posted

You may already know this but artificial sweetners (especialy aspartame, Nutrasweet) and MSG are two of the leading causes of migraines. I have Celiac but gluten doesn't give me a migraine (fortunately! brain fog and D are enough).

Aspartame is my migraine trigger. What amazes me is how many people think nothing of it and act like you're nuts for not wanting it. Kinda like gluten, actually. And the only thing that helps is going to sleep. From what I've seen here in this forum, Celiac makes it's own rules sometimes. Given the family history, I'd consider it even if tests come back negative. They don't have to have full-blown Celiac to simply react to gluten.

karenchal Newbie
karenchal
Posted

Hi All,

My Son who is 5yrs old has Crohns Disease and since we have put him on a Gluten Free diet, he has improved dramatically. The Symptons are very simalar to Coeliacs so we thought we would give it a go. Anyone else in a simalar situation??

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

Celiac.com Sponsor (A8-M):


JodiC Apprentice
JodiC
Posted
  • Author

Thank you for your replies. It completely breaks my heart to see them suffering so much. I didn't want to take them gluten free in case it could actually trigger the disease. I don't know if this is true but as a mother I worry. I know what to do for myself but am unsure when it comes to my kids. Maybe it's more of wishful thinking that they don't have to deal with the disease. :(

Another question is would the endoscopy show damage at their age? The reason I ask is that they have to get their tonsils removed due to the fact they are chronically enlarged and I thought maybe they could do it all at once.

aikiducky Apprentice
aikiducky
Posted

If it's already few years ago that they were tested you could ask to have them tested again. As they have a celiac relative (you), they should be tested at least every five years or so anyway, since celiac can be triggered at any age. In other words, the fact that they have tested negative once is not a guarantee that they won't test positive later in life.

Pauliina

Murph Newbie
Murph
Posted

Grr double-post.

Murph Newbie
Murph
Posted
Celiac does not go "dormant"...you can develop celiac at any age and once it starts - its there for life.

Sandy

My celiac went "dormant"!!

Had much trouble as a toddler - so says Mom, then no problem until ~age 35, I believe triggered by my little brother's sudden tragic death.

And as for my 2 cents, I'd put the kids on a gluten-free diet.

Nancym Enthusiast
Nancym
Posted
Open Original Shared Link

Archived

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

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.