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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,131
    • Most Online (within 30 mins)
      7,748
    Itsabit
    Newest Member
    Itsabit
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Does High DGP IGA Typically Mean Celiac?

      By trents · Posted

      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Does High DGP IGA Typically Mean Celiac?

      By Skg414228 · Posted

      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Less than 10 parts per billion issues

      By Scott Adams · Posted

      Yes, these articles may be helpful:    
    • trents
      Does High DGP IGA Typically Mean Celiac?

      By trents · Posted

      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Does High DGP IGA Typically Mean Celiac?

      By Skg414228 · Posted

      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
×
×
  • Create New...