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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,138
    • Most Online (within 30 mins)
      7,748
    Monaouz
    Newest Member
    Monaouz
    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

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.