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

What Am I Missing?!?

brookeb4

Recommended Posts

brookeb4 Newbie
brookeb4
Posted

Hi everyone!

This is my first post on this forum, though I have found some great information here since I have been gluten free. A brief history:

After 6 weeks of feeling awful (headaches, stomache cramps, complete exhaustion), I had an AH-HA moment after eating an Italian dinner filled with bread and pasta, and then becoming completely disoriented and dizzy. My boyfriend suggested maybe it was a gluten intolerance. (I had been to the doctor that very morning to discuss my symptoms, and this was never brought up. No shock now, knowing what I know.) The next day I went gluten-free, and then splurged that night at a holiday party. I had felt amazing all day, but within minutes of eating gluten containing food at the party I was sick. I then knew I had it figured out. I have been gluten-free ever since, that was December 19th of 2009.

My doctor suggested I just stay on the gluten free diet, and said there was no need for testing when I told her of my discovery. That was all fine and dandy until last Wednesday when I got a headache, and it has been reoccuring every day. I feel fine in the mornings, and then by 10 or 11 am it is back. I have been taking extra strength Tylenol and am getting a little worried about taking so much (not a big fan of medicating the problem.)

I am so frustrated. I have a queary into my doctor, but so far she hasn't seemed to be the biggest supporter of this. I am not eating gluten in anything. I have changed my soap, my conditioner, my lotion. Is there something I am missing? Do I have to go through every item I touch daily and make sure that I am not contaminating myself? I feel like I need to live in a bubble.

Sorry for the venting. I am so frustrated. I am sure you all understand.

Thanks!

Brooke

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

Celiac.com Sponsor (A8-M):


Lynayah Enthusiast
Lynayah
Posted

It is also possible that your headaches may not be gluten-related. I hope your doctor gives you the attention you deserve!

However, if it is a reaction to gluten: Think carefully about what you do in the morning before the headache begins.

Have you checked your toothpaste?

I'm glad to see you changed lotion. For me, I was using hand lotion that contained gluten, then doing things like putting something in my mouth with my fingers.

Oh yes, I totally understand how you feel. It can be very frustrating trying to figure it all out.

jerseyangel Proficient
jerseyangel
Posted

Just throwing this out there--do you use artificial sweeteners in the morning? I ask because I developed headaches (not typical for me) and through process of elimination I discovered it was Splenda that was causing them.

It could be another sensitivity showing up, sometimes that can happen when you get the gluten out of the picture. The timing of your headaches suggest something you are eating for breakfast?

Splenda is gluten-free, by the way....I'm simply intolerant to it. ;)

brookeb4 Newbie
brookeb4
Posted
  • Author

I do use Splenda, but only while at the office. At home I take regular sugar and non-fat milk in my coffee.

I haven't checked my toothpaste yet. That never even crossed my mind. But it gets worse as the day goes on, so I toothpaste doesn't make the most sense.

Thanks for your suggestions, guys!

Brooke

Lynayah Enthusiast
Lynayah
Posted

Just throwing this out there--do you use artificial sweeteners in the morning? I ask because I developed headaches (not typical for me) and through process of elimination I discovered it was Splenda that was causing them.

It could be another sensitivity showing up, sometimes that can happen when you get the gluten out of the picture. The timing of your headaches suggest something you are eating for breakfast?

Splenda is gluten-free, by the way....I'm simply intolerant to it. ;)

Patti: Is headache your only symptom from Splenda, or do you have lower GI symptoms as well? Thanks for any info!

Gemini Experienced
Gemini
Posted
Hi everyone!

This is my first post on this forum, though I have found some great information here since I have been gluten free. A brief history:

After 6 weeks of feeling awful (headaches, stomache cramps, complete exhaustion), I had an AH-HA moment after eating an Italian dinner filled with bread and pasta, and then becoming completely disoriented and dizzy. My boyfriend suggested maybe it was a gluten intolerance. (I had been to the doctor that very morning to discuss my symptoms, and this was never brought up. No shock now, knowing what I know.) The next day I went gluten-free, and then splurged that night at a holiday party. I had felt amazing all day, but within minutes of eating gluten containing food at the party I was sick. I then knew I had it figured out. I have been gluten-free ever since, that was December 19th of 2009.

My doctor suggested I just stay on the gluten free diet, and said there was no need for testing when I told her of my discovery. That was all fine and dandy until last Wednesday when I got a headache, and it has been reoccuring every day. I feel fine in the mornings, and then by 10 or 11 am it is back. I have been taking extra strength Tylenol and am getting a little worried about taking so much (not a big fan of medicating the problem.)

I am so frustrated. I have a queary into my doctor, but so far she hasn't seemed to be the biggest supporter of this. I am not eating gluten in anything. I have changed my soap, my conditioner, my lotion. Is there something I am missing? Do I have to go through every item I touch daily and make sure that I am not contaminating myself? I feel like I need to live in a bubble.

Sorry for the venting. I am so frustrated. I am sure you all understand.

Thanks!

Brooke

Brooke...one of the biggest causes for headaches, and one that is never addressed by any doctor, is dehydration. If you don't drink enough water and load up on coffee or tea in the morning, then a headache will set in by the time you mentioned in your post. I had the same problem a few weeks back and by coincidence, it was during a very cold and dry snap we had, weather-wise. I had a pounder by noon, everyday. Turns out, I wasn't drinking enough water in the morning. Once I water loaded, the headaches went away.

Don't assume that any problems you may be having are gluten related. Many times they are not and unless you are eating your shampoo and lotions, they won't make you sick. You can touch gluten all you want....just don't put any in your mouth and wash your hands often....good advice for everyone, not just Celiacs. You will get the hang of this soon enough so relax and congratulations on figuring out your problem!

jerseyangel Proficient
jerseyangel
Posted

Patti: Is headache your only symptom from Splenda, or do you have lower GI symptoms as well? Thanks for any info!

Lynayah,

I also had lower Gi symptoms: diarrhea, some cramping....strange dreams and night sweats.....but I didn't attribute it to the Splenda for the longest time. After I stopped using it, both those and the headaches went away fairly quickly.

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

Celiac.com Sponsor (A8-M):


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. SusanJ
      - SusanJ replied to Jillian83's topic in Coping with Celiac Disease
      5

      Celiac and dermatitis herpetiformis has taken Me from Me

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was...
    2. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body. See my blog. Click on my name to go to my page...
    3. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    4. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    5. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,980
    • Most Online (within 30 mins)
      7,748
    Cathal Brugha
    Newest Member
    Cathal Brugha
    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

    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
×
×
  • 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.