Confusing blood tests results

[Olfy75]

Hello everyone! 

I hope you can shed some light. 
I’ve always had digestive issues, and always been eating “weirdly” because of this. I.e. I gravitate towards a gluten free diet, I don’t eat dairy products with lactose, and other foods give me issues.

Lately I was feeling so poorly - with all a new constellation of symptoms not completely related to the usual intestinal stuff - that I decided to test for celiac disease/gluten sensitivity.

In my family, my mother has always had LOTS of issues with digestive problems etc but never tested for celiac or other intolerance (and now I wonder why!). After developing diplopia and ataxia problems, she has now cerebellum atrophy which by complete surprise I read can be linked to gluten (gliadin).

Anyhow, my blood tests are as follows and I can’t understand what they mean:

TISSUE TRANSGLUTAMINASE

TTG IgA 0.2 ELI U/m (NORMAL)
COELIAC DISEASE PROFILES:

IgA (g/L) 1.16 g/L (NORMAL)

ANTI GLIADIN IgA Ab 86.0 U/ml (HIGH)

Any input and explanation would be highly appreciated!!

thank you in advance 

Olivia 

[Wheatwacked]

11 minutes ago, Olfy75 said:

I gravitate towards a gluten free diet, I don’t eat dairy products with lactose, and other foods give me issues.

In my opinion that is sufficient evidence you have a problem with eating gluten, regardless of any medical opinion. The easiest way to tell is by adopting a gluten free diet and having improvement. Unless you need other validation, which for official diagnosis would be Marsh III damage to your small intestine. Celiac Disease can cause undiagnosed malnutrition which will cause numerous other symptoms like other food sensitivities which will cause more deficiencies. A nutrient dense diet should show improvement. Once gluten is out of the way you can deal with other symptoms.

 

[trents]

Basically, they ran two celiac antibody tests on your blood and one was negative  (tTG-IGA) but the other was positive (anti gliadin IGA). But without reference ranges (where is the negative vs. postitive cutoff) we can't comment on whether or not it was a strong positive. Do you have the reference range used by that lab? There is no standard for reference ranges used for these celiac antibody tests so each lab uses their own ranges. The third test (IGA, aka, total IGA) is not a test for celiac disease per se but is done to establish whether or not your total IGA is low. Low total IGA drives down other IGA values and can generate false negatives.

It is normal for celiacs to not show positive values for all antibody tests so because you have one positive value I would assume you do have celiac disease, especially given your symptoms and family history symptoms.

Edit: Your doctor may refer you to a GI specialist for an endoscopy/biopsy of the small bowel lining to confirm the antibody test results. celiac disease damages the villi that line the small bowel.

Edited March 16, 2023 by trents

[Olfy75]

54 minutes ago, Wheatwacked said:

In my opinion that is sufficient evidence you have a problem with eating gluten, regardless of any medical opinion. The easiest way to tell is by adopting a gluten free diet and having improvement. Unless you need other validation, which for official diagnosis would be Marsh III damage to your small intestine. Celiac Disease can cause undiagnosed malnutrition which will cause numerous other symptoms like other food sensitivities which will cause more deficiencies. A nutrient dense diet should show improvement. Once gluten is out of the way you can deal with other symptoms.

 

 

50 minutes ago, trents said:

Basically, they ran two celiac antibody tests on your blood and one was negative  (tTG-IGA) but the other was positive (anti gliadin IGA). But without reference ranges (where is the negative vs. postitive cutoff) we can't comment on whether or not it was a strong positive. Do you have the reference range used by that lab? There is no standard for reference ranges used for these celiac antibody tests so each lab uses their own ranges. The third test (IGA, aka, total IGA) is not a test for celiac disease per se but is done to establish whether or not your total IGA is low. Low total IGA drives down other IGA values and can generate false negatives.

It is normal for celiacs to not show positive values for all antibody tests so because you have one positive value I would assume you do have celiac disease, especially given your symptoms and family history symptoms.

Edit: Your doctor may refer you to a GI specialist for an endoscopy/biopsy of the small bowel lining to confirm the antibody test results. celiac disease damages the villi that line the small bowel.

Thanks a lot, both of you. 
sorry about the incomplete tests results, I thought it was somewhat standard, here they are with reference rage:

TTG IgA 0.2 ELI U/ml  reference

< 7.0 normal

7-10 equivocal 

> 10 positive

S-IgA (g/L) 1.16 g/L Reference 0.41-3.49

ANTI GLIADIN IgA Ab 86.0 U/ml - reference < 7.0

I don’t know if that is a strong or weak positive, what do you think?

I will surely see a GI and have some more tests done to understand what’s going on, and if it’s gluten the cause, we’ll,  it’s at least “good news” as knowing it is something that will make me feel better. But really right now, after reading that ataxia is reversible and seeing my mom’s problem now (she can barely walk) I feel terrible about not thinking about it and telling her to get tested. Maybe it wasn’t so common back then.

one more question, long time ago (I have been having  problems for a long time, at least 10 years) I had a colonoscopy, which showed narrowing and some sort of inflammation (I was given mesalamine which I still take sometimes when I’m desperate lol), would that have shown something or is it another kind of endoscopy that’s needed?

Again, thanks a lot xxx

[Wheatwacked]

Colonoscopy goes in the bottom. Endoscopy goes in through the top. 😇

Here is a list of essential vitamins and minerals that could be deficient due to malabsorption.  The mininum RDA is set at a level that keeps most healthy people healthy. Sick people need more than the minimum to recover.

 

VANADIUM1.8 mgND

[trents]

It's definitely a strong positive.

A colonoscopy cannot be used to diagnose celiac disease. It doesn't go up far enough to reach the small bowel area affected by celiac disease.

Ataxia can be reversed but not always. Depends on how much nervous system damage was done and how long it was subjected to the toxic effects of gluten on the nervous system.

[Olfy75]

19 minutes ago, Wheatwacked said:

Colonoscopy goes in the bottom. Endoscopy goes in through the top. 😇

Here is a list of essential vitamins and minerals that could be deficient due to malabsorption.  The mininum RDA is set at a level that keeps most healthy people healthy. Sick people need more than the minimum to recover.

 

VANADIUM1.8 mgND

You know, I’ve always been deficient and been supplementing with high doses of vit D, iron, B12 and Magnesium and just just barely make the minimum RDA … maybe now I understand why!!

Thanks a lot xxx

[Olfy75]

13 minutes ago, trents said:

It's definitely a strong positive.

A colonoscopy cannot be used to diagnose celiac disease. It doesn't go up far enough to reach the small bowel area affected by celiac disease.

Ataxia can be reversed but not always. Depends on how much nervous system damage was done and how long it was subjected to the toxic effects of gluten on the nervous system.

Oh well… thank you. I will update here when I have some more tests and that endoscopy (I was so sure that the colonoscopy was enough 🙈) … 

hopefully soon!

Yes my mom’s ataxia unfortunately can’t be reversed now, as it (the inflammation or what was causing the ataxia aka the gluten if it’s actually the case) has caused the cerebellum atrophy, and that is not reversible. I’m just thinking what if I thought/read/etc that earlier, maybe… 😕

Thank you for the help!! Xxx

[trents]

Of course, there is the "in between" of reversing ataxia which means in severe, long term cases, it will not be completely reversed but there can be improvement from a gluten-free diet.

[Olfy75]

58 minutes ago, trents said:

Of course, there is the "in between" of reversing ataxia which means in severe, long term cases, it will not be completely reversed but there can be improvement from a gluten-free diet.

It would be incredible if she could feel better!! Hopefully she’ll agree to have the tests done ☺️

[Wheatwacked]

This free book, put out by the National Ataxia Foundation in 1990 has lots of nutrition info. It unfortunately ignores gluten as a cause of ataxia, and underplays the importance of choline to brain health but otherwise is good food for thought.  Nutrition and the Patient with Progressive Central Nervous System Disease. Chapter 7 on page 39 is specifically about success with a high choline diet.  It could be adapted to GFD.

Dr Amen is a leading expert in brain health and nutrition.  Dr. Amen's 10 Simple Food Rules to Guarantee a Healthier Life

from the video at 40 minutes: "Intermittant fasting has been shown to help to break up some of the plaque in the brain." https://youtu.be/DZZcfld1-dQ?t=2155

Edited March 17, 2023 by Wheatwacked

[Wheatwacked]

9 hours ago, Olfy75 said:

Yes my mom’s ataxia unfortunately can’t be reversed now, as it (the inflammation or what was causing the ataxia aka the gluten if it’s actually the case) has caused the cerebellum atrophy, and that is not reversible.

Are these the same people that catagorically said gluten is not a problem? Watch Dr Amen's video, he will give you hope. By the way he's done 17 programs on Public Service Television (PBS) non commercial TV.

It is Never too late unless you are already dead.

[Olfy75]

11 hours ago, Wheatwacked said:

Are these the same people that catagorically said gluten is not a problem? Watch Dr Amen's video, he will give you hope. By the way he's done 17 programs on Public Service Television (PBS) non commercial TV.

It is Never too late unless you are already dead.

Thank you for all the links and info, I will most surely have a good look at them.

My mom’s almost 80 now though. I’m 43.

by the way, I was checking all the links to other diseases, I am curious to see if there’s a correlation with mast cells activation syndrome and interstitial cystitis with degranulation predominance (which I have), I can’t find anything on this website, but I am sure there’s some information somewhere online, if it’s the case! 
 

I will let you know if I find relevant and trustworthy sources, so maybe it can be useful for someone as well.

 

Have a lovely weekend.

[Olfy75]

11 hours ago, Wheatwacked said:

Are these the same people that catagorically said gluten is not a problem? Watch Dr Amen's video, he will give you hope. By the way he's done 17 programs on Public Service Television (PBS) non commercial TV.

It is Never too late unless you are already dead.

Sorry, don’t know how to edit my previous message, I wanted to add that I’m thinking there must be a correlation with IC / MC problems because it was actually my urologist who suggested I follow a low gluten diet as - in his opinion - gluten creates/increases inflammation in the body. Go figure.

[trents]

Olfy75, Forum members have only a short time window to edit their posts. This is an anti spam provision. Spammers will "test the waters" with what may look like a legitimate initial post and if it is approved they will go back later and edit so as to add in a nefarious link.

Edited March 17, 2023 by trents

[Wheatwacked]

My motto is if they don't know the cause, good chance it is gluten related. He is right. But gluten also has an opiod effect that numbs us to its inflammatory effect.  I know that gluten caused my prostate hypertrophy (diagnosed at 21 years old) because it finally went away at age 63 when I started GFD; and it causes endometriosis. Good possibility it is the cause of your IC.

To add insult to injury: Omega 6 causes inflammation. Omega 3 healing. The optimum ratio is 1:1. So you've got the inflammatory effect of gluten itself plus the high omega 6 of wheat flour products. ouch!

• Bread, protein (includes gluten) 1 slice 19 gm
  • Total Omega-3 fatty acids 11.2 mg
  • Total Omega-6 fatty acids 180 mg
  • 180/11.2 = 16:1 omega 6 to omega 3 ratio
  • https://nutritiondata.self.com/facts/baked-products/4854/2

Quote

Gluten is a common dietary inflammatory trigger that activates mast cells and disrupts the intestinal barrier, potentially initiating and perpetuating mast cell hyperreactivity. Mast cell-nerve interactions appear to relate to bloating and abdominal pain in patients with non-celiac gluten sensitivity   6 Things to Keep in Mind When Trying to Create a Balanced Mast Cell Activation Diet

 

[Olfy75]

18 minutes ago, Wheatwacked said:

My motto is if they don't know the cause, good chance it is gluten related. He is right. But gluten also has an opiod effect that numbs us to its inflammatory effect.  I know that gluten caused my prostate hypertrophy (diagnosed at 21 years old) because it finally went away at age 63 when I started GFD; and it causes endometriosis. Good possibility it is the cause of your IC.

To add insult to injury: Omega 6 causes inflammation. Omega 3 healing. The optimum ratio is 1:1. So you've got the inflammatory effect of gluten itself plus the high omega 6 of wheat flour products. ouch!

• Bread, protein (includes gluten) 1 slice 19 gm
  • Total Omega-3 fatty acids 11.2 mg
  • Total Omega-6 fatty acids 180 mg
  • 180/11.2 = 16:1 omega 6 to omega 3 ratio
  • https://nutritiondata.self.com/facts/baked-products/4854/2

 

Yooooo … so many things to process and learn 🙈 

I am so sorry about the delay in your diagnosis! And it got better on GFD - just WOW. It must be upsetting.

[Olfy75]

Hello guys 🙂

as promised, an update, I spoke to a Gastroenterologist and he had me perform a calprotectin test, which came back negative.

he also said that I need upper endoscopy with biopsy to see if it celiac.

In his opinion removing gluten now is pointless as I do not know if I am celiac.

I won’t be able to have the endoscopy until end of year at best (I am overseas atm) so I guess I am stuck 😅

Still tempted to go gluten free… 🤦🏼‍♀️🙈 also because I don’t get it, what else, besides gluten, could cause elevated results (anti gliadin Ab)? Or can high levels still be normal? 🤯

On the other hand, my mother brushed off my suggestion to get tested, what can I say! 
 

Thank you and have a lovely day!

[trents]

If your villi turn out not to be damaged but withdrawing gluten improves your symptoms then I would conclude you have NCGS (Non Celiac Gluten Sensitivity) for which there is no definitive test but it is 10x more common than celiac disease and shares many of the same symptoms.

[trents]

Another option would be to do a trial gluten free diet up until the endoscopy/biopsy and see if your symptoms improve. The Mayo Clinic guidelines for a gluten challenge for those already having launched into the gluten-free diet is the daily consumption of two slices of wheat bread (or the gluten equivalent) for two weeks leading up to the day of the endoscopy/biopsy. Two things to consider here in that regard. First, if you are overseas and not living and cooking in your own home, it may be very difficult to control gluten intake. Second, resuming gluten consumption after a significant period of abstinence typically results in stronger reactions than when gluten was being consumed.

[Olfy75]

5 hours ago, trents said:

Another option would be to do a trial gluten free diet up until the endoscopy/biopsy and see if your symptoms improve. The Mayo Clinic guidelines for a gluten challenge for those already having launched into the gluten-free diet is the daily consumption of two slices of wheat bread (or the gluten equivalent) for two weeks leading up to the day of the endoscopy/biopsy. Two things to consider here in that regard. First, if you are overseas and not living and cooking in your own home, it may be very difficult to control gluten intake. Second, resuming gluten consumption after a significant period of abstinence typically results in stronger reactions than when gluten was being consumed.

Thank you Trent, yes I am confused on what to do. Also because over the past month I have been eating *much more* gluten and, ironically my digestive issues were much less. Got lots of acne though 😅😅 🤦🏼‍♀️🤷🏼‍♀️

I will think about it …

thanks xxx

 

[Wheatwacked]

As Frank Robinson said in 1973, "Close don't count in baseball. Close only counts in horseshoes and hand grenades."  Add to that "and Celiac Disease".  

What the doctors diagnose you with doesn't help. Gluten Free does. To me it's a no-brainer.  Keep in mind that wheat products are fortified because otherwise the general public will have deficiencies on MAD (Modern American Diet). 

Edited May 12, 2023 by Wheatwacked

[knitty kitty]

@Olfy75,

Have you thought about getting a DNA test to see if you carry any genes for Celiac Disease?  

Anemia and Diabetes can cause false negatives in blood tests for Celiac Disease.  

Mast Cell Activation Syndrome occurs in celiac disease.  Mast cells are part of the immune system.  They degranulate as part of the immune process.  However, mast cells also degranulate when thiamine is deficient.  Thiamine, Vitamin B 1, helps mast cells hold their wad.  

Thiamine deficiency is often found in ataxia, with diplopia being another symptom.  Unfortunately, doctors are not adequately trained in nutritional deficiencies and this connection to Thiamine is overlooked.  

I'm hoping Thiamine and the rest of the eight B vitamins along with magnesium, a cofactor needed to make enzymes with Thiamine, will help you and your mom.  

Here's some scientific studies for you...

Coeliac Disease and Mast Cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678566/

And...

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

And...

Increased mast cell degranulation within thalamus in early pre-lesion stages of an experimental model of Wernicke's encephalopathy

https://pubmed.ncbi.nlm.nih.gov/10411347/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

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

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

And...

Thiamine deficiency disorders: a clinical perspective

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

Hope this helps!

[Olfy75]

Good day everyone 🙂

as promised, an update. 
I decided to do a gastroscopy while here in SA.

I sent the blood tests to the doctor and he called me two days before my gastroscopy to say  “your blood test are VERY positive for celiac, why do you want to do the endoscopy”?

I told him that I wanted to be sure since only one blood test was positive, so I had the endoscopy with biopsy, my villi are normal, there’s CD3 lymphocytes “within normal limits “ (no Indication on numbers was given), blood tests confirmed anemia, vit D deficiency.
based on this the doctor said “not celiac, probably a false positive (but I repeated the test after a month and it was still positive?)you do need iron IV, you should see a nutritionist, maybe you have food (FODMAP, wheat, lactose) intolerance. 
 

I feel like I am more confused than before. Maybe food intolerance? “False positive” two times in a row? I’m very happy that it is not celiac, but also disappointed as I feel like he didn’t give me an answer on how to feel better… A dietician? really? 

🤷🏼‍♀️ what do you think??

Edited to add: he prescribed amiptriptiline as well.
 

thank you for your input!!

xxx

[trents]

I would not be too quick to accept the doctor's conclusion that you don't have celiac disease. You are by no means the first participant on this forum to report this phenomenon. Several things can cause positive antibodies but negative biopsy, including patchy damage to the villi combined with a lack of being thorough in sampling by the one doing the scoping. Anemia and vitamin D deficiency also could point to celiac disease.

Can you share the specifics of what antibody tests were run to check for celiac disease along with their scores and the ranges used for each to define negative vs. positive?