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
 Share

Recommended Posts

Rick Williams Newbie
Rick Williams
Posted

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
trents
Posted

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

Rick Williams Newbie
Rick Williams
Posted
  • Author

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
DJFL77I
Posted

whats the number

Rick Williams Newbie
Rick Williams
Posted
  • Author

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
Scott Adams
Posted

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
Rick Williams
Posted
  • Author
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
Scott Adams
Posted

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
RMJ
Posted

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
trents
Posted

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

Kate333 Rising Star
Kate333
Posted

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
Scott Adams
Posted

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

 

Kate333 Rising Star
Kate333
Posted
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
Scott Adams
Posted

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
Posterboy
Posted
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
 Share
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. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    5. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.