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

Head Aches ,migranes

davidsmomceliac12

Recommended Posts

davidsmomceliac12 Newbie
davidsmomceliac12
Posted

My son David has celiac disease and suffers from head aches/migraines we are having a very hard time controlling these head aches and have been on many meds now we are on a anti depressant that is meant to do both migraines and depression so far it has worked and but he is still getting head aches and very pail looking sooo i was hoping someone out there has a more natural approach to this and can give me some in site.

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

Celiac.com Sponsor (A8-M):


Cypressmyst Explorer
Cypressmyst
Posted

I read on another post you made that he is sensitive to airborne gluten. If you want his headaches and depression to get better I would suggest taking the whole house gluten free. No way a hyper can live in a gluten environment without feeling it.

School is a whole different animal. I feel for you here because what can you do? Take him out? Homeschool him? Or work to educate the world that gluten is poison for not just people with Celiac but for almost everyone.

I'm working on the latter. Let's get this poison out of our food supply already! B)

T.H. Community Regular
T.H.
Posted

I'd put him on an elimination diet - my daughter and son both had trouble with other foods on top of the gluten, and they turned out to be more sensitive to gluten than most of the gluten free foods were (my daughter reacts to <10ppm of gluten, and most gluten-free food has <20ppm). The depression along with the migraines makes me think undiscovered gluten may still be the cause.

Has his thyroid been checked? It's often a problem for celiacs, and can also cause depression.

You might try to google 'migraine diet' for him - it suggests foods that are more likely to trigger migraines (and if your doctor has not suggested this? I'd get a new one. Food triggered migraines are very common, and, obviously, easily fixed by diet).

Also, a rather odd one - do you have a water softener? there are some people who react to higher levels of sodium in their diet with migraines. You could try him on distilled water for a while and see if that helped.

weluvgators Explorer
weluvgators
Posted

Have you checked all of his medicines to ensure they are gluten free?

We also have to live gluten, dairy, and soy free, as we found other foods that cause us reactions too. We also have to live very gluten free - a gluten free household, cleaning protocols for anyone that enters our home, modifications at school to reduce environmental gluten exposure, and careful sourcing of ALL of our foods.

We have not noticed any problems with paper at school, but one of our children cannot eat in the cafeteria and cannot be in the gymnasium on a daily basis - especially during that recess after lunch. Both of my children require a gluten free classroom, but the actual practice of that is a bit different for both . . . and one of them doesn't truly have a gluten free classroom, as it is logistically challenging. We manage their school based on symptoms, have tried several things, and keep the things that work.

Do you have any pets in the home? How about farm animals? Those are other potential sources of problems.

And while it may not be a problem for him yet, he will need to evaluate the risks of kissing anyone else as he gets older. And actually, that may be a problem now if other family members are gluten eaters (thinking pecks on the cheek there). I would also go through and review all toiletries and cleaning agents as well.

Our daughter's daily headaches seemed to be function of ingesting trace gluten (all in "gluten free" products). This is such a long, exhausting journey. Hopefully, we are able to help you through it all.

And if you are resistant to Mayo, have you called the Chicago Celiac Center? I have called all of the research centers trying to figure out which one would work well for us. So please don't hesitate to call these places for interviews before making a trip there!

Good luck! And I hope your son is feeling better soon.

frieze Community Regular
frieze
Posted

If this were a 12 yr old female, we would be right on top of suggesting hormones being a potential problem....might they not be in a 12 yr old male as well?

twe0708 Community Regular
twe0708
Posted

My son David has celiac disease and suffers from head aches/migraines we are having a very hard time controlling these head aches and have been on many meds now we are on a anti depressant that is meant to do both migraines and depression so far it has worked and but he is still getting head aches and very pail looking sooo i was hoping someone out there has a more natural approach to this and can give me some in site.

My daughter was the same way around that age and we found out she had a problem with her thyroid.

ryebaby0 Enthusiast
ryebaby0
Posted

My 17 y.o. had horrible migraines (aura, blind in one side of his face, 2 -3x/month) but his doctor prescribed magnesium and he has not had one since. He takes 400mg two times a day. Migraines are not uncommon in adolescents, it turns out. More than other conditions, what works for one person might not work at all for another, so keep trying stuff.

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

My daughter diagnosed with Celiac and Eosinophilic Esophagitus was being reffered to a nuerologist for the possibility of abdominal migraines. I'm not sure how I feel about the diagnostic process of abdominal migraines and we are stuck in the middle of an insurance change too. I do think an elimination diet might help determine if there are any "trigger" foods to avoid.

Keeping my daughter out of the brick and mortar school building has helped a lot. You can still do "public" school as a "homebound student" or public cyber school. (Both of these options are free and accredited.)

GreennGlutenFree Newbie
GreennGlutenFree
Posted

When I hit puberty I started getting migraines as well... I wasn't diagnosed until I was 23 with celiac disease but to this day if I have caffeine or sugar substitutes (ie "the blue stuff" or "the pink stuff") I get a migraine. There are a million and one things that could be triggering the migraines so elimination diet is probably the key even though they are hard. Good luck!

Cypressmyst Explorer
Cypressmyst
Posted

Sugar and gluten are your most likely culprits. Sugar messes with magnesium uptake, among other things, if I recall (Been a while since I read up on sugar) and of course gluten is the Devil and messes with everything. :blink:

Could be as simple as adding some almonds to your diet! ;)

Elimination diet is a good plan.

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. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
    2. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    3. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    4. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    5. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,295
    • Most Online (within 30 mins)
      7,748
    LaniH
    Newest Member
    LaniH
    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

    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.