Not Celiac.....right?

[Scott Adams]

2 hours ago, frankenstein said:

I appreciate it and I am sure there is value but I would think Quest and LabCorp would include it in their standard panel and be current with things. I'm sorry and I know I don't know much here, but I find language such as "operating under the dated assumption" as Internet talk where users exist under this notion that doctors and professional lab companies don't know anything. A lot of doctors suck, I get it. But for the majority of doctors to be "outdated" just very likely doesn't hold. Totally for advocating and I have had to do it a ton, but that language is a flag for me. Like people who say "Doctors don't know to stain for CD117!" for MCAS.

In the article posted before this by @trents take a look at the section "Celiac Disease Blood Antibody Screening is ~98% Accurate in Adults Using the Mayo Clinic Protocol." The Mayo Clinic, and most celiac disease blood panels, do include total IGA screening.

[frankenstein]

Is the bloodwork like the endoscopy where you have to eat gluten for 8 weeks, if I were to theoretically try it again?

[frankenstein]

47 minutes ago, Scott Adams said:

In the article posted before this by @trents take a look at the section "Celiac Disease Blood Antibody Screening is ~98% Accurate in Adults Using the Mayo Clinic Protocol." The Mayo Clinic, and most celiac disease blood panels, do include total IGA screening.

Okay so is the total IGA screening the only piece that was missing there? Just out of curiosity is that something that is now standard that wasn't standard 5 years ago? Would I have to eat gluten a bunch for 6 weeks to do it? Lastly if Mayo still recommends that but a doctor does all but one of it but then does the biopsy in a way doesn't the biopsy kind of cover that piece?

[trents]

The Mayo Clinic guidelines for a pretest "gluten challenge" is as follows:

1. For the blood antibody testing, two slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the day of the blood draw

2. For the endoscopy/biopsy, the same amount of gluten for two weeks

We in the celiac community would consider this to be minimal preparation for testing. But you will find considerable variation in pretest gluten challenge guidelines from one healthcare entity to the next. I know it seems strange that the challenge for the biopsy is shorter than that for the blood antibody testing but it is so.

[trents]

3 minutes ago, frankenstein said:

Okay so is the total IGA screening the only piece that was missing there? Just out of curiosity is that something that is now standard that wasn't standard 5 years ago? Would I have to eat gluten a bunch for 6 weeks to do it? Lastly if Mayo still recommends that but a doctor does all but one of it but then does the biopsy in a way doesn't the biopsy kind of cover that piece?

I would say it is becoming a standard. Formerly, it was thought that low total IGA was found only in the pediatric population but it has become apparent that plenty of adults have low total IGA. We get many reports of this on our forum.

[knitty kitty]

@frankenstein,

Aside from "My gut is absolute hell", you haven't described your symptoms.

What exactly ARE your symptoms?

[frankenstein]

5 minutes ago, knitty kitty said:

@frankenstein,

Aside from "My gut is absolute hell", you haven't described your symptoms.

What exactly ARE your symptoms?

Currently constipatory or just like not everything coming out as it used to, a mix of burning pain and intense discomfort, severe tightness with no way to relieve it, energy draining discomfort, cramping some of the time, and occasionally the pain is so bad it feels like someone wringing the intestines like a towel. Often feeling like everything's is just sitting in there. Other times impossible to tell if it's stool or gas (but not the type that gas x can fix) or air.  Pretty much always Lower abdomen at pelvis level and less commonly but still frequently belly too. Just depends. Sometimes getting stool out helps but often it's not far enough down.

[knitty kitty]

@frankenstein,

Constipation is a symptom of Celiac Disease.  Some of us have the classic diarrhea, some have constipation, some have both.  

Constipation and diarrhea both can happen in thiamine deficiency, too.  

Gastroparesis where it feels like nothing is moving can happen in Celiac.  Gastroparesis is also a symptom of Thiamine deficiency.

Celiac Disease causes malabsorption of essential nutrients like iron, magnesium and the eight essential B vitamins. 

Magnesium deficiency can cause constipation.

Thiamine is the B vitamin that can only be stored for a very short amount of time.  Deficiency symptoms can appear in as little as three days.  Symptoms can wax and wane mysteriously because a twenty percent increase in dietary thiamine produces an eighty percent increase in brain function, including the part of the brain that signals the gastrointestinal system to squish food through the intestines (perstalsis).  Thiamine is needed for these muscle contractions.  

The bloating can be due to intestinal bacteria fermenting undigested carbohydrates.  Lack of sufficient stomach acid due to insufficient Niacin B3 can contribute to undigested carbohydrates in the digestive tract. 

Nothing out of the ordinary for Celiac people...

[frankenstein]

2 hours ago, knitty kitty said:

@frankenstein,

Constipation is a symptom of Celiac Disease.  Some of us have the classic diarrhea, some have constipation, some have both.  

Constipation and diarrhea both can happen in thiamine deficiency, too.  

Gastroparesis where it feels like nothing is moving can happen in Celiac.  Gastroparesis is also a symptom of Thiamine deficiency.

Celiac Disease causes malabsorption of essential nutrients like iron, magnesium and the eight essential B vitamins. 

Magnesium deficiency can cause constipation.

Thiamine is the B vitamin that can only be stored for a very short amount of time.  Deficiency symptoms can appear in as little as three days.  Symptoms can wax and wane mysteriously because a twenty percent increase in dietary thiamine produces an eighty percent increase in brain function, including the part of the brain that signals the gastrointestinal system to squish food through the intestines (perstalsis).  Thiamine is needed for these muscle contractions.  

The bloating can be due to intestinal bacteria fermenting undigested carbohydrates.  Lack of sufficient stomach acid due to insufficient Niacin B3 can contribute to undigested carbohydrates in the digestive tract. 

Nothing out of the ordinary for Celiac people...

Hello. What are your credentials?

Constipation can happen due to hundreds of issues. You seem to have quite a focus over the years on thiamine. What I described is not gastroparesis. I do not lack magnesium and B vitamins. Thiamine deficiency is rare in the US, even in those with celiac. 

I wish you all a good day. We are not meant to chat.

[knitty kitty]

There is no wealth like knowledge,

No poverty like ignorance.

Goodbye!  

[frankenstein]

6 hours ago, knitty kitty said:

There is no wealth like knowledge,

No poverty like ignorance.

Goodbye!  

You... you do realize your quote here that you attribute to Buddha is not actually a Buddha quote?

[knitty kitty]

I did not attribute it to anyone.

I thought "we are not meant to chat", quoting you.

[trents]

frankenstein, I do not see where knitty kitty attributed that proverb to anyone. 

But do you realize that there is such a thing as subclinical nutritional deficiency? This would be where the deficiency is not serious enough to cause classic and blatant diseases such as beriberi or rickets but is still less than optimum. And serum levels do not always tell the story since what's floating around in the blood is not the same as what is being taken up and used by the body's cells.

[frankenstein]

52 minutes ago, knitty kitty said:

I did not attribute it to anyone.

I thought "we are not meant to chat", quoting you.

You quote it to Buddha on your profile. My we are not meant to chat with a cordial farewell. Your response was not.

[frankenstein]

7 minutes ago, trents said:

frankenstein, I do not see where knitty kitty attributed that proverb to anyone. 

But do you realize that there is such a thing as subclinical nutritional deficiency? This would be where the deficiency is not serious enough to cause classic and blatant diseases such as beriberi or rickets but is still less than optimum. And serum levels do not always tell the story since what's floating around in the blood is not the same as what is being taken up and used by the body's cells.

It is rabbit holes to go down the route of even if the lab work won't spot it. And it's outrageous for the other forum writer here to say you have constipation so that certainly means you have these super rare deficiencies. I was hoping this forum would be different than what it is.

Again we are not meant to chat here and I wish us all good health.

[trents]

Given your symptoms, what about gastro paresis? 

[knitty kitty]

Apply your heart to understanding and your ears to words of  knowledge. ...Proverbs

"Prejudice is the emotional commitment to ignorance" - Nathan Rutstein.

The concept has been around a long time and used by many people.

 

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pubmed.ncbi.nlm.nih.gov/34685573/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Thiamine deficiency disorders: diagnosis, prevalence, and a roadmap for global control programs

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

The Relevance of Thiamine Evaluation in a Practical Setting

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551939/

And...

Deadly deficiency at the heart of an environmental mystery

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6196476/

And...

Deficiency syndromes in top predators associated with large-scale changes in the Baltic Sea ecosystem

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6952091/

And...

Widespread episodic thiamine deficiency in Northern Hemisphere wildlife

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5153840/

[frankenstein]

15 minutes ago, trents said:

Given your symptoms, what about gastro paresis? 

It's not stomach located type symptoms so it does not seem like that

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. 

To me it seems like you have a few choices:

1) Get a total IGA test done--you can do this while on any diet. If your levels are naturally on the lower side, or if you are deficient, then your original positive celiac disease test result would likely have been higher than it was.

2) Just go gluten-free for a few months to see if your symptoms improve, which would mean likely NCGS and/or celiac disease (maybe you caught it early, before villi damage?)/

3) Do a 6-8 week gluten challenge and get another full celiac disease blood panel done.

4) Do a genetic test to see if you have the markers for celiac disease (not sure if you did this already). This might mostly rule it out if you don't have them, but may not rule out NCGS.

This forum is focused on celiac disease and/or issues with gluten sensitivity, and nearly everyone with either condition has some level of nutrient deficiencies (especially those with celiac disease). Others in this thread who have lots of experience have tried to be helpful, and hopefully you can at least appreciate this.

[frankenstein]

1 minute ago, Scott Adams said:

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. 

To me it seems like you have a few choices:

1) Get a total IGA test done--you can do this while on any diet. If your levels are naturally on the lower side, or if you are deficient, then your original positive celiac disease test result would likely have been higher than it was.

2) Just go gluten-free for a few months to see if your symptoms improve, which would mean likely NCGS and/or celiac disease (maybe you caught it early, before villi damage?)/

3) Do a 6-8 week gluten challenge and get another full celiac disease blood panel done.

4) Do a genetic test to see if you have the markers for celiac disease (not sure if you did this already). This might mostly rule it out if you don't have them, but may not rule out NCGS.

This forum is focused on celiac disease and/or issues with gluten sensitivity, and nearly everyone with either condition has some level of nutrient deficiencies (especially those with celiac disease). Others in this thread who have lots of experience have tried to be helpful, and hopefully you can at least appreciate this.

Thank you. I can. I appreciate the offer to help. I am carrying being burned badly by people who led me in the wrong direction before. I took some herbal supplements in April that gave me immediate malaise, I had a month where I had to force myself to eat through pain, I lost 10-15 lbs in a month, and since April pain has been a frequent factor. My gut was already a thing but following that advice which was off base and in the sibo world has really really really bit me. I do still stand by that is not actually help when people are so quick to jump to the rare stuff only seen in journals as a certainty.

I want to investigate celiac a bit. I also like...i need to trust the opinion of very well doctors over an RD jumping to it. Currently going gluten free  instead of FODMAP seems to be backfiring but hard to know.

 

If I get total IGA test done though, can I compare it to the numbers of 2018? Like wouldn't that have to be comparing now to now?

 

No issues with the genetic. Just if it's positive it doesn't tell ya much.

 

Also sorry I don't understand what you mean by "If your levels are naturally on the lower side, or if you are deficient, then your original positive celiac disease test result would likely have been higher than it was. "

[Scott Adams]

35 minutes ago, frankenstein said:

If I get total IGA test done though, can I compare it to the numbers of 2018? Like wouldn't that have to be comparing now to now?

Also sorry I don't understand what you mean by "If your levels are naturally on the lower side, or if you are deficient, then your original positive celiac disease test result would likely have been higher than it was. "

Your test result was still positive, so I'm not really sure how helpful doing a new total IGA test would be at this point. If you had natural IGA deficiency then it is possible that:

1) This test result might have been higher--it possibly could have been a solid positive or high positive: "Deamidated Giladin Abs, Iga was a weak positive of 27."

2) This negative test result might be a false negative: tTG IgA

3) This negative test result might be a false negative: Endomysial Antibody IgA.

[frankenstein]

Hi Scott. I am confused. You first said "Get a total IGA test done--you can do this while on any diet". Then you said "I'm not really sure how helpful doing a new total IGA test would be at this point." Can you clarify?

[trents]

frankenstein, have you actually had a total IGA test done at any time? This thread has become protracted so maybe I missed that early on. In post #22 you indicate you had a total IGA done in 2018. Am I understanding this correctly?

[frankenstein]

Hi please see post 1 for what i had done in 2018 through LabCorp. That was the one that had the weak positive. Sorry I don't know all these terms so I am just writing down what the paper says. 

In Post 22 i am quoting Scott's advice as i am confused about it. Post 22 isnt talking about myself.

[Scott Adams]

It really only takes one positive blood test for celiac disease for you to reach the next step in diagnosis, which is the endoscopy/biopsy for celiac disease, which I believe that you already had done twice (I assume the reason you did the endoscopy was due to your positive blood test). Your biopsy results were negative, meaning that you likely don't have celiac disease, at least currently (it's possible you could develop it later, based on your positive blood test, which indicates your immune system is indeed reacting to gliadin/gluten). 

To make a long story short, a total IGA test might still have value if you wanted to get a more accurate picture of whether your original blood test results were accurate. Selective IgA deficiency is a relatively rare immune disorder where individuals have lower than normal levels of immunoglobulin A (IgA) antibodies in their blood. The exact prevalence of selective IgA deficiency can vary by population and region, but it is estimated to affect approximately 1 in 500 to 1 in 2,000 people in the general population. So the odds of you having low IGA would be fairly low, thus it may not make sense to do this test now. When I said that you can do this while eating gluten or not I simply meant that it's a simple blood test that doesn't require any special diet, as does blood screening for celiac disease. 

From my post earlier, this might be your best option, and you could do gluten-free and low FODMAP:

2) Just go gluten-free for a few months to see if your symptoms improve, which would mean likely NCGS and/or celiac disease (maybe you caught it early, before villi damage?).