Biopsy shows no, blood tests and gluten free say yes

[trents]

Thanks for reporting back. When you aren't sure whether things are gluten free or not, assume they aren't gluten free. It's not worth the risk.

What is the high end of normal for total IGA (Immunoglobulin A IGA)? On this forum, we are used to only being concerned about it being lower than normal as that would have an effect on the accuracy of IGA-based celiac antibody tests such as the tTG-IGA. I'm not sure that being lower than normal or higher than normal indicates a health problem per se.

[linko]

1 hour ago, trents said:

Thanks for reporting back. When you aren't sure whether things are gluten free or not, assume they aren't gluten free. It's not worth the risk.

What is the high end of normal for total IGA (Immunoglobulin A IGA)? On this forum, we are used to only being concerned about it being lower than normal as that would have an effect on the accuracy of IGA-based celiac antibody tests such as the tTG-IGA. I'm not sure that being lower than normal or higher than normal indicates a health problem per se.

I think you'r'e asking what the ranges are on the lab results?  

tTG-IGA says <15 not detected
Immunoglobulin A IGA says 47-310    (mine is currently at 474)

[Wheatwacked]

 A study has found a correlation between vitamin D deficiency and psoriasis severity, suggesting that some people who increase their intake of the vitamin could better control this skin condition.  Vitamin D modulates autoimmune responses.

In the sixties a sandwich and glass of milk contained 300 mcg of iodine.  Since 1970 the daily intake of iodine is half of what is was while prescriptions of thyroxine has doubled.  Iodine RDA is 150 mcg. The safe upper limit is 1100 mcg in the US and 3000 mcg in Japan.  Iodine used to be used by dermatologists (except for Dermatitis herpetiformis). Psoriasis is related to Syphilis.  You might consider supplementing intake with Liquid Iodine drops (1 drop = 50 mcg) or seaweed.  I take 500 - 1200 mcg a day. Helps with brain fog, too.

Association of Psoriasis With Thyroid Disorders: A Hospital-Based, Cross-Sectional Study   

10 Signs and Symptoms of Iodine Deficiency

 

[Scott Adams]

15 hours ago, linko said:

I think you'r'e asking what the ranges are on the lab results?  

tTG-IGA says <15 not detected
Immunoglobulin A IGA says 47-310    (mine is currently at 474)

If your results were tTg-IgA: 247.6 and the positive level for the test is >15, then you are well over 10x the positive level.  

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:

 

 

[linko]

@Wheatwacked

Thank you for that about iodine, that's the first time I've seen anything linking low heart rate, feeling colder, and less sweat, all 3 I have had for a long long time.  Although I have found those potentially linked to Gilbert Syndrome as well, which I have.   I do eat the things they recommend for iodine on a fairly regular basis (eggs, cod fish, yogurt), but maybe it's still not enough, so it's worth trying to increase a bit more (and track it) to try it out. I see prunes on there, I might try going back to eating more of them, my body seems to like them. 
 
As for Vitamin D, I was deficient in it a few years ago, but since then have taken supplements regularly and try to get sun as much as possible.  My Vit D levels have been normal (in the 50s) for at least a year and a half now.  I have read about the link between Vitamin D and Psoriasis like you mentioned. I have experienced that the more sun I get it does help a little, more than anything else really.  I have tried light therapy to mixed results as well, but it was hard to do with other chronic issues.  I tried taking higher doses of vitamin D (10,000 ui every other day for a month, then 10,000 per day for a month). I found no change in my psoriasis for either, maybe even slightly worse actually in the end.  I think I just read that Gilbert Syndrome (which I have) might not do well with high doses of Vitamin D.   Before, to get levels back up, I was taking 5,000 every 1-2 days, which is what I'm back to taking now.  I take more when I get less sun, and less when I do.  Full sun is the best way.   Also, most of my life I've been a pretty outdoorsy person and in the sun a lot, but I've always had psoriasis regardless.  I still feel like there is a difference for when I do get sun and don't, so I do believe in that link between vitamin D and psoriasis. 


@Scott Adams

I believe you read my previous posts' data wrong.  I was at 247.6 before I was diagnosed with celiac.  After 7 months gluten free, it is now 15.9, just barely above the <15.0. 

Just to be overly communicative, here it is all in one place:

My current levels:
tTg-IgA:  15.9     (lab range: <15.0)
Immunoglobulin A:  474   (lab range:  47-310)
EMA-IgA: negative

[Scott Adams]

Thanks for the correction! It's great that your tTg-IgA levels have gone down so fast--good job with your gluten-free diet!

[Wheatwacked]

14 hours ago, linko said:

Gilbert Syndrome

People with Gilbert's syndrome don’t produce enough liver enzymes to keep bilirubin at a normal level.

The Relationship among Homocysteine, Bilirubin, and Diabetic Retinopathy  "present study investigated the association between the levels of plasma homocysteine and serum total bilirubin" Skip to the part they discuss bilirubin and homocysteine and choline.

Have you had your homocysteine tested.  If it is high greater than 18, your Gilbert's Syndrome may improve by increasing Choline intake. B6, B12, Choline, Folate and Taurine detoxify homocysteine.  Homocysteine is a result of the breakdown of Hemoglobin. Bilirubin is a yellowish pigment that is made during the breakdown of red blood cells. pigments that make up the red color in blood are deposited into the bile to form bilirubin.

Only 10% on western diet get enough choline.  Although we make some it is not enough for our needs.  Only 10% of doctors know anything about choline.  I know that my gut is happier when I eat enough eggs (four a day) or boost with pill form phosphatidlycholine.

Choline supplementation prevents the effects of bilirubin on cerebellar-mediated behavior in choline-restricted Gunn rat pups    Conclusions: These results suggest that choline may be used as a safe and effective neuroprotective intervention against hyperbilirubinemia in the choline-deficient premature infant.

13 hours ago, linko said:

maybe it's still not enough

I am blown away by my improvement since upping my iodine to 1000 mcg in the past month with the Liquid Iodine.  In multiple systems.  The Wolff-Chaikoff Effect:Crying Wolf? 

It took from 2015 when I started 10,000 IU vitamin D3 a day until 2018 just to get my plasma up to 47 ng/ml. Next test in 2021 I was 86 ng/ml and has stayed consistent around 80 ng/ml (200 nmol/L in other countries).  Last summer I got about 3 hours a week of midday unprotected sun and in September I tested at 93 ng/ml.  Fall came on so no sun and I stopped the vitamin D pills two months before the test in December.  Dropped to 66 ng/ml.  PTH has remained steady.

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

 

[Kaye116]

@linko - you said you have the variant. What variant do you have? 

[linko]

10 hours ago, Kaye116 said:

@linko - you said you have the variant. What variant do you have? 

I did the 23andme genetic testing, which showed I have the variant of a celiac carrier.  That can be another data point in a diagnosis of celiac, though not a way to diagnose it.  If one's a carrier, then the chances are higher of having it. My GI doctor mentioned genetic testing can help add a data point if I wanted to do that, which I had already been thinking about doing it anyhow, so I did. 

[linko]

Hi everyone, 

It's now been over a year since getting tested for celiac, an endoscopy/biopsy, and going gluten free. I have new information so I thought I would update for anyone coming across this at any time and find it helpful. And I have a few questions in case anyone might know. 

Here are my newest test results for the 4th blood tests taken, almost exactly 1 year from the initial tests confirming celiac. 

First results, for initial testing
tTg-IgA: 247.6
Immunoglobulin A: 500
EMA-IgA: negative

Second results, at time of biopsy. (I was gluten free for 2 months, then went back on gluten for a month for the biopsy)
tTg-IgA:  47.2
Immunoglobulin A: 475
EMA-IgA: negative

Third results, about 7 months after 2nd results at biopsy
tTg-IgA:  15.9
Immunoglobulin A: 474
EMA-IgA: negative

Fourth results, after 1 year and at the time of capsule endoscopy
tTg-IgA:  18.9
Immunoglobulin A: 540
EMA-IgA: negative
Note that both numbers went up!

I have also decided to see a different GI doctor this time around because my other one retired and I didn't like their staff anyhow.  This one's staff is also not so great, but the doctor does seem decent enough to continue on. It's at least good to have a 2nd opinion from a different doctor and he does seem to want to find answers more than the other one did. 

Something new, was after my recent capsule endoscopy, I had a lot of issues after it.  I had some random abdominal pain from time to time and a lot of bloating, as well as bowel movements all over the place with going back and forth between loose stools and constipation. That happened for at least a few weeks or more. Now I'm back to before it, a little constipation and bloating. 

As per what was written by someone's response above, I tried supplementing iodine for awhile, which I noticed no effects and I don't see any changes in my blood tests either. 

Questions:

Why would my first biopsy show no signs of anything, including no flattened villi, but then a capsule endoscopy take a year later showed a small amount of flattened villi in a few places? He said there were very few pockets of that, so mostly nothing showing up of any issue.  Maybe the first one didn't notice because it was an endoscopy instead of a capsule endoscopy?  This one I just had was a capsule endoscopy. 

Has anyone seen the above results when going gluten free?   I try my best to be gluten free and thought I was doing a good job, though of course I'm still learning.  I eat at home most of the time and there is little to no gluten cooked or eaten in the house ever. I have to rely on cooks at restaurants to confirm gluten free, but rarely eat out, maybe a few or so times per month. My GI doc said to be extremely careful for the next month and then we'll run another celiac test at the time of a colonoscopy to see if being extremely careful brings down the number.  I'm also trying to be extremely cautious with what I eat and trying to improve gut health.  

There is still no explanation for the high immunoglobulin A and the doctors don't seem to be that concerned about it, though slowly trying to understand it. I have tried my best to eat healthy and improve gut health, but obviously nothing has worked if it's now even higher. 

I now have a colonoscopy scheduled for a month from now to see if that can potentially find an answer to the high IgA. I have a history of colon cancer in the family, and I'm coming up on the age to get one anyhow, so it's also a reason to have that done. 

Also, I recently had a test of 100 for albumin in urine.  I did read about it some and see that it's possible my medication I was recently put on does have an association with that, so it's possible that's it. But I also see it can potentially be a sign of kidney issues, which I read that could also be a cause of high IgA?  Is that something to look into?  I mentioned it to the GI doctor and he didn't seem to think anything of it. The new GI doctor is also doing a test for the pancreas, since I mentioned a few things that he thought was reason enough to believe to get a test for it as well. 

 

[Scott Adams]

Good job on your ongoing recovery @linko! It looks like your antibodies are dropping normally. The slight uptick on your most recent test could indicate that your diet isn't 100% gluten-free (if you eat outside your home, especially in restaurants, this could be the culprit). In no expert on high Immunoglobulin A, but your doctors should be able to tell you more about this--for celiac disease the most important thing is to see your tTg-IgA going down over time, which means your diet is gluten-free.

The capsule endoscopy can capture more areas of your intestines than a standard endoscopy, so perhaps there were areas seen with it that could not be seen via a regular endoscopy.

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

[Wheatwacked]

High IgA levels may indicate an underlying infection or inflammation which fits with your symptoms.

Replenishing vitamin deficiency can take a long time.  It is not one and done.

 Iodine  appears to play a role in immune response.  If you have an ongoing infection or inflammation, say from gluten, it will be diverted there as a priority.  It works to clear out damaged cells so you can heal.

I recently raised my intake to 1600 mcg (50% of the safe upper limit in Japan.  You may not feel it but it helps to heal your gut.  Iodine should not change any thing in your blood tests.  This may interest you since you are concerned about kidney disease. Inadequate Iodine Intake and Long-term Outcomes After Kidney Transplantation &nbsp;ransplantation 106(9S):p S322, September 2022.  

Quote

Conclusion: Inadequate iodine intake is prevalent among KTR, and its occurrence appears to be strongly related to dietary factors, including salt intake. Inadequate iodine intake was strongly and independently associated with an increased risk for graft failure and all-cause mortality. These results suggest that supplementation of iodine may reduce risks of graft failure and premature mortality among KTR.

Have you tried the choline? It has many functions in the body. Choline is a major part of bile and we need bile to breakdown fats in the small intestine.  Fatty foods can cause bloating because they take longer to digest than other foods. One of choline's many jobs is to speed that up.

Vitamin D is essential to modulate the immune response.

It takes a long time to raise vitamin D blood level and if there is active inflammation it can take more.

In April I stopped taking 10,000 IU a day (since 2015) because I was steady over 90 ng/ml (243 nmol/L) for several guarterly  25(OH)D Serum Level tests.  I get at least 3 hours a week of full body, midday S Florida sun.  In the three months ending two weeks ago my 25(OH)D Serum Level dropped to 55 ng/ml.  A rather precipetice drop considering it took from 2015 to 2019 to get to 47 ng/ml.

Quote

The benefit of vitamin D was more obvious when only the final three years of the study were analyzed. This suggests that it takes a while to benefit from a daily supplement. Can vitamin D supplements prevent autoimmune disease?

 

 

 

Edited August 2 by Wheatwacked