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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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    1. trents
      - trents replied to heart390's topic in Introduce Yourself / Share Stuff
      5

      Why now?

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    2. heart390
      - heart390 replied to heart390's topic in Introduce Yourself / Share Stuff
      5

      Why now?

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago. The gluten will be my 4th autoimmune disease. Thanks so much for all your input!!!
    3. trents
      - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Confused about HLA-DQ Celiac gene test result

      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me...
    4. trents
      - trents replied to heart390's topic in Introduce Yourself / Share Stuff
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      Why now?

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent...
    5. ainsleydale1700
      - ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Confused about HLA-DQ Celiac gene test result

      Thank you! I have the classic symptoms while eating gluten-constipation, diarrhea, weight loss, loss of appetite, etc. My main problems right now are elsewhere in my body. Dental issues...my teeth started breaking. I had two teeth break in the past month. My dentist looked at my teeth with a camera and said I have no enamel left. Im really struggling...
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    • trents
      Why now?

      By trents · Posted

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    • heart390
      Why now?

      By heart390 · Posted

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you!  I have the classic symptoms while eating gluten-constipation, diarrhea, weight loss, loss of appetite, etc.  My main problems right now are elsewhere in my body.  Dental issues...my teeth started breaking.  I had two teeth break in the past month.  My dentist looked at my teeth with a camera and said I have no enamel left.  Im really struggling with neuropathy, and gynecological conditions.  My periods stopped 6 years ago and Im not in perimenopause or menopause.  When I consume gluten, my resting HR goes up about 30 points, and takes a week or so to normalize.  The list goes on, its very overwhelming Ongoing vitamin D deficiency, magnesium, iron, blood creatinine is always low, dont know if thats relevant. Below is from the Celiac panel, otherwise the results were normal.  Not crazy high, but I wasnt aware the Celiac panel was included in the bloodwork.  So I didnt prepare for it in advance, and Ive been on a gluten-free diet for the past 4 years High t-Transglutaminase (tTG) IgG: 7, Reference Interval: 0-5, Unit: U/mL This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG.   I know I have a bad reaction to gluten.  But with the low likelihood of Celiac, any guidance on other paths to explore would be greatly appreciated!  Ive been trying to figure this out for years now, and more issues keep coming up.  It has been so overwhelming.  Thanks again.
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