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

Positive / negative


Rick Williams

Recommended Posts

Rick Williams Newbie

Hi Guys,

Apologies if I have missed similar posts. I have had blood results back which are positive for IgA TTG but negative for IgA endomysial. My sister is confirmed Celiac and I have been struggling with a constant migraine for coming up a year plus some more classic symptoms. 

I have been referred to gastro now however unsure on the results outcome. 

Thanks in advance for any advise/thoughts


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



Celiac.com Sponsor (A8-M):



trents Grand Master

The TTG is the most sensitive antibody test for Celiac Disease.

Rick Williams Newbie

Thank you so much for the rapid reply!

Will confirm outcome on here once known. 

Keen to understand if anyone else has migraines as part of their symptoms. 

R

DJFL77I Experienced

whats the number

Rick Williams Newbie

Hi,

Just contacted the docs to find out and the level is 28.2kU/L for transglutaminase IgA

Thanks so much

R

Scott Adams Grand Master

Has your doctor helped you understand your results? Did they recommend a biopsy or gluten-free diet. Given your family history it seems like they should be able to diagnose you with blood tests also, but they may want to do a biopsy as well.

Rick Williams Newbie
4 hours ago, Scott Adams said:

Has your doctor helped you understand your results? Did they recommend a biopsy or gluten-free diet. Given your family history it seems like they should be able to diagnose you with blood tests also, but they may want to do a biopsy as well.

Thank you for your reply. I have been referred to a gastroenterologist for further review and potential tests but no formal explanation as yet as to the current results. Due to current Covid circumstances all referrals are delayed so was reaching out to see if anyone had had similar. I'm aware that migraines aren't particularly common symptoms. 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Actually migraines are a symptom of celiac disease, and here are some research articles we've done on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/ 

RMJ Mentor

I was originally tested for celiac disease because of my migraines.  Some doctors feel they are related, some don’t.  I do have celiac disease; eliminating gluten lessened, but didn’t completely eliminate, the migraines.

trents Grand Master

I don't think there is anything that will eliminate migraines completely on this side of the grave.

Kate333 Rising Star

Extreme, chronic stress could also trigger migraines (and even "regular" headaches).  Fortunately, I have had bad migraines only once or twice in my life.  Both times coincided with periods of bad job physical/mental burnout. 

But from other comments on this board, I see many others linking them to celiac disease.  Regardless of the cause, I would think it would really help to incorporate relaxation, stress reduction, exercise, and healthy sleep and diet habits into your daily routine.  Of course, not so easy in a pandemic!  I could see how a lack of those practices could make them more painful or frequent.   Limiting computer/Iphone/news, listening to soft music, unplugging hours before bedtime, and massaging my face/scalp right before sleep really help me a lot.  Your primary doc can also recommend medications to reduce the frequency.

I hope you feel better soon.   

Scott Adams Grand Master

I agree, and we recently did an article on this topic:

 

Kate333 Rising Star
22 hours ago, Scott Adams said:

I agree, and we recently did an article on this topic:

 

Thanks for the link Scott! 

I often see that oft-quoted "1 in 100" statistic, along with the observation of massive under-diagnosis.  I can't help but wonder whether a more accurate global celiac disease rate must be a lot higher, maybe closer to 1 out of 50?

Scott Adams Grand Master

The issue is that it does vary by country and genetic groups, so averaged out it may be somewhere near this number, but there really isn't enough data that has been collected worldwide yet to determine the actual number.

Posterboy Mentor
On 12/15/2020 at 6:10 PM, RMJ said:

I was originally tested for celiac disease because of my migraines.  Some doctors feel they are related, some don’t.  I do have celiac disease; eliminating gluten lessened, but didn’t completely eliminate, the migraines.

 

On 12/15/2020 at 7:25 PM, trents said:

I don't think there is anything that will eliminate migraines completely on this side of the grave.

RMJ and Trents,

Nothing might not be 100% but there a some great things you can do like take a B-Complex and watch your Nitrates!

Even when you know the answer (sometimes you can't help people).....not saying either of you are like that...

I had a friend where I work who had to retire, in part, due to cluster (headaches) and migraines....but they won't take the Riboflavin I told them about..... (I didn't know about Thiamine then)....

Here is the some of the best research I have read about B-Vitamins helping Migraines.

Maybe it will help you!

https://www.theguardian.com/science/2016/oct/18/migraines-could-be-caused-by-gut-bacteria-nitrates-food-trigger-study-suggests

Here is the one Thiamine entitled "Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache"

https://pubmed.ncbi.nlm.nih.gov/29850313/

Here is the one on Riboflavin entitled "High-dose riboflavin treatment is efficacious in migraine prophylaxis: an open study in a tertiary care centre"

Ya'll probably know this I had to look it up "prophylaxis" means to prevent or in advance of disease/or symptoms'...

Riboflavin aka B2 is a Vitamin that can be taken to "prevent" the migraine from  happening in the first place!

And why I always favor a Vitamin when I can find research that shows a Vitamin/Mineral can help my health or the health of others and/or my friends.

I hope this is helpful but it is not medical advise.

As always, “Consider what I say; and the Lord give thee understanding in all things” 2 Tim 2:7 this included.

Posterboy by the grace of God,

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
  • 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 replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    5. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,362
    • Most Online (within 30 mins)
      7,748

    DPC
    Newest Member
    DPC
    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

    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
×
×
  • 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.