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Positive / negative

Rick Williams
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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

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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. 

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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,

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
    2. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    3. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    4. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    5. trents
      - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Fiber Supplement

      By trents · Posted

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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