Questions about Test Results

[KGB1819]

Could anybody please look at these blood test results, and share with me your experience and if these look like a possible positive?

Deamidated Gliadin Abs, IgA20-19  (units)MB

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

FDeamidated Gliadin Abs, IgG10-19  (units)MB

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

F

t-Transglutaminase (tTG) IgA14   H0-3  (U/mL)MB

Negative 0 - 3

Weak Positive 4 - 10

Positive >10

.

Tissue Transglutaminase (tTG) has been identified

as the endomysial antigen. Studies have demonstr-

ated that endomysial IgA antibodies have over 99%

specificity for gluten sensitive enteropathy.
 

t-Transglutaminase (tTG) IgG30-5  (U/mL)MB

Negative 0 - 5

Weak Positive 6 - 9

Positive >9

FEndomysial Antibody IgANegativeNegative MB

FImmunoglobulin A, Qn, Serum14487-352  (mg/dL)MB

So, out off all of these, the only one red and flagged was my tTg iGa. Even with that, it seems much more lower than a lot of people I see on here. With everything else being negative, is it unlikely I have celiacs?

 

my doctor is out all week, so they said it’ll be sometime next week that she’ll be able to call me and discuss my results. 
 

Also, what’s everyone’s experience with different symptoms? Is it always GI related?

the reasoning I got tested, is for the last year now, I’ve been suffering with chronic dry eye, and I keep getting a scaly rash. About a year ago I had a scaly rash all over my torso that no one knew what it was. & now for the last couple of months I have had a scaly rash all around my eyelids that have been burning/bleeding, no matter what I’ve tried. After doing some reading, I wonder if it is Dermatitis Herpetiformis? Besides joint pain, especially hip pain, bloating, and anemia, I don’t have any GI related symptoms. 
 

my doctor agreed to test me because when I was a teenager they did the gene test on me, which came back positive. It was about the same time I have pancreatitis and was having some issues. 
 

Some input would just be appreciated. Thank you! 🤗

[trents]

The single best antibody test for celiac disease, the tTG-IGA, is positive for you. That definitely suggests celiac disease as this test is considered to combine good sensitivity with good specificity. No one will test positive in all tests. Yes, we sometimes see much higher scores than yours for this test but if you didn't have celiac disease you shouldn't be throwing a positive at all for this test. We also see lower scores than yours in those who actually do have celiac disease as confirmed by biopsy. The score strength can be influenced by a number of factors including length of time since onset of celiac disease and the amount of gluten consumed on a daily basis over time.

Does your rash show blisters or pustules in the bumps? This is a defining characteristic of DH.

Your next step should be an endoscopy with biopsy of the small bowel villous lining to check for damage cause by inflammation. This is the gold standard, mor or less.

Finally, many or most people with celiac disease do not have GI distress or at least so little it doesn't raise concerns that they have something wrong that needs to be diagnosed. We call them "silent" celiacs. We know this to be true now but a lot of doctors, especially those who have been out of med school for a long time, are operating on very dated information about celiac disease and won't consider it if there is no GI distress.

[knitty kitty]

We're you consuming sufficient amounts of gluten prior to your blood antibody tests?  

You may want to continue on gluten at these levels below and be retested in two weeks.  Check with your doctor.

 

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Dermatitis Herpetiformis is usually small raised bumps with a liquid or keratinized center. 

Scaly rashes might be indicative of vitamin deficiencies which commonly occur in CeD.  Niacin deficiency can cause a scaly rash that worsens in the sun.  Eczema is another rash common in CeD.  

Vitamins that help with skin health include fat soluble vitamins, Vitamins A and D, available in food sources like meats (liver), and Vitamin C.  Again, these can get low in undiagnosed CeD.

Keep us posted on your progress!

Edited November 17, 2023 by knitty kitty
Typo

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Wheatwacked]

There are more than 200 symptoms linked to Celiac Disease.  I had nineteen that improved on a gluten free diet with substantial vitamin replenishment.  Malnutrition is often unrecognized in the developed world because the 'experts' say it cannot be.

Some people can test seronegative yet positive on endoscopic biopsy.  Many with Dermatitis Herpetiformis are seronegative yet have small intestine damage.  DH is only caused by Celiac Disease, so perhaps a dermatologist using appropriate biopsy technique can shorten your search for an official diagnosis.

In the end, regardless of expert opinion, if your symptoms improve on GFD you should seriously consider that your body is telling you the truth.

Donuts are not an essential nutrient, despite the advertising.

 

 

[KGB1819]

Thanks everyone! Still waiting to hear back from my NP!! 😩 I have an appointment with a dermatologist tomorrow, since I have been now experiencing tiny fluid type blisters all over my cheeks and chin, that almost feels like sandpaper. Along with the reoccurring flaking of my eyelids, & red splotchy rash around my eyes. I have changed to a gluten free diet for almost 2 weeks, now. My eyes have gotten significantly better since then, but I’m assuming I’ll have to do the gluten challenge. From what I read, to do a skin biopsy for possibly DH I’ll also have to be eating gluten. & I’m not sure how long that stays in your system

[Wheatwacked]

It may take years for GFD to suffice as the sole treatment.  Here is a good read:  Dermatitis Herpetiformis: What Practitioners Need to Know

[knitty kitty]

@KGB1819,

The tiny fluid filled blisters on cheeks and chin sounds like the blisters in DH.  

Iodine can cause a DH breakout.  No gluten required.  Dairy products, shellfish and crustaceans are all high in Iodine.  And iodized salt.  

Iodine makes the antibodies more active and causes DH flares.  

Biopsies of DH should be taken next to (not on top of) a DH blister.  

Hope this helps!

[Scott Adams]

17 hours ago, KGB1819 said:

Thanks everyone! Still waiting to hear back from my NP!! 😩 I have an appointment with a dermatologist tomorrow, since I have been now experiencing tiny fluid type blisters all over my cheeks and chin, that almost feels like sandpaper. Along with the reoccurring flaking of my eyelids, & red splotchy rash around my eyes. I have changed to a gluten free diet for almost 2 weeks, now. My eyes have gotten significantly better since then, but I’m assuming I’ll have to do the gluten challenge. From what I read, to do a skin biopsy for possibly DH I’ll also have to be eating gluten. & I’m not sure how long that stays in your system

Let us know how things go.

[KGB1819]

UPDATE:

Went to the dermatologist today. She prescribed me a steroid cream, as she said my eyelids were really thick and that I have dermatitis, but she believes if it were due to gluten, I’d have the rash on my elbows and knees, as well. 
 

On that note, I have called my nurse practitioner office twice since my lab work (3 weeks ago) and both times, they’ve told me she hasn’t gotten around to viewing them, yet. 
 

Besides having to look around for a new primary, since the one I’m currently dealing with, is really dragging their feet. I’m at a loss of if I should continue to eat gluten free, and see if my symptoms go away (rash included) or continue to eat gluten, and find a GI and do the biopsy. 
 

I know the biopsy is required for a definite diagnosis. But I also hate to undo 3 weeks of eating gluten-free, and noticing changes in my bloat, fry eyes, and dermatitis on my face not being nearly as bad, to do the gluten challenge in order to do the biopsy. 
 

Thoughts? I know my tTg iGa was elevated. But is it worth doing the biopsy? Are there other things that can cause this?

[trents]

Is there any particular reason you need an "official diagnosis"? If you lived in the UK there would be a reason since you would be eligible for government stipends to buy gluten free food and additional follow-up care. But I think you know what you need to know already since you have the tTG-IGA elevated scores and your symptoms improved significantly when you initiated the gluten free diet.

Edited November 29, 2023 by trents

[Wheatwacked]

Start shopping for a new primary care physician that has experience with Celiac Disease but don't pull the trigger until you hear their interpretation of the results.  You may be surprised.  Given that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy and your symptoms are improving on GFD it does seem a no brainer, but you don't mention any gastro symptoms other than the pancreatitis.  When you talk to them be sure to mention the improvement on GFD.

Leaving the question of the Blepharitis. When you have blepharitis, your eyelids become inflamed or swollen. The condition can play a role in bringing on dry eye."  You don't mention extreme itchiness, a hallmark of DH..  Do you have dandruff? "Rosacea is a long-term inflammatory skin condition that causes reddened skin and a rash, usually on the nose and cheeks. It may also cause eye problems. The symptoms typically come and go, with many people reporting that certain factors, such as spending time in the sun or experiencing emotional stress, bring them on."  Rosacea seems to fit your pattern better than DH.  A red herring.  Fitting nicely with your dermatologist's interpretation.

On 11/17/2023 at 11:53 AM, knitty kitty said:

Scaly rashes might be indicative of vitamin deficiencies which commonly occur in CeD.  Niacin deficiency can cause a scaly rash that worsens in the sun.  Eczema is another rash common in CeD.  

Stay your course.  See what the doctor says about your bloodwork. Other than GFD and fixing your vitamin deficiencies, there is not a lot more to do.  Since you are improving on GFD, the immediacy of a diagnosis is moot. A defacto diagnosis as it were.  As @trents said, you don't need permission to avoid foods that cause you ill.  A follow up Celiac blood panel in say six months would prove the point, unless your doctor recommends endoscopy with Celiac biopsies.  Then start the Gluten Challenge with the new protocol.

[Scott Adams]

If I were you I'd give the gluten-free diet another couple of months before deciding. You can always go back to gluten and do a gluten challenge for another celiac disease screening, but if you have DH you could undo a potential recovery by eating gluten again.

On a side note, I only had DH on the back on my right thumb, and it never appeared anywhere else, although I also had blepharitis which, for me, was the first symptom whenever I got a bit of gluten in my diet after going gluten-free:

https://my.clevelandclinic.org/health/diseases/10032-blepharitis

[KGB1819]

So, my doctors office finally gave me a call yesterday. They said my blood work was abnormal, and they’re referring me to a GI doctor for an endoscopy to rule out celiacs. 
 

With that, I think I decided to just continue to eat gluten free until I see the GI doctor and express to them my symptoms have been getting better over the last 3 weeks eating gluten-free, and see what they recommend, and go from there. If they recommend I do the gluten challenge, I will go from there. 

[trents]

16 minutes ago, KGB1819 said:

So, my doctors office finally gave me a call yesterday. They said my blood work was abnormal, and they’re referring me to a GI doctor for an endoscopy to rule out celiacs. 
 

With that, I think I decided to just continue to eat gluten free until I see the GI doctor and express to them my symptoms have been getting better over the last 3 weeks eating gluten-free, and see what they recommend, and go from there. If they recommend I do the gluten challenge, I will go from there. 

Do you have any more detailed information than the bloodwork being "abnormal". Was this bloodwork specifically for celiac antibody testing?

Edited November 30, 2023 by trents

[knitty kitty]

5 hours ago, KGB1819 said:

So, my doctors office finally gave me a call yesterday. They said my blood work was abnormal, and they’re referring me to a GI doctor for an endoscopy to rule out celiacs. 
 

With that, I think I decided to just continue to eat gluten free until I see the GI doctor and express to them my symptoms have been getting better over the last 3 weeks eating gluten-free, and see what they recommend, and go from there. If they recommend I do the gluten challenge, I will go from there. 

 

Do keep in mind that the autoimmune response to gluten can be more severe after having been gluten free for a period of time. 

Call the GI doctor's office and find out when the endoscopy will be and ask for their gluten challenge protocol.  

If you ask for and receive the results of your recent abnormal blood tests, you can share them here.  

[trents]

kk, I think the blood test results are in the OP's first post.

[KGB1819]

Yeah, I have my blood test results in my original post. Only my tTg iGa was elevated. I have an my referral appointment with my GI doctor this Tuesday. After doing some talking, I started the gluten challenge Thursday night. That way by the time I see him, I would have been eating gluten for almost a week. So hopefully he will be able to schedule the endoscopy sometime the end of December. I’m not sure how fast the small intestine heals? That if it is true celiacs, the 3 weeks I was gluten-free, if it would have made a noticeable difference on the endoscopy?

 

I’ll keep everyone posted, though!! I appreciate all your advice, and responds. I will say… just a few weeks gluten-free, and now taking in gluten for a couple days. I really do wonder if this has been my problem, all along. & if I was just blind to it, and what my body was saying. Though I haven’t had a ton of GI problems like some do, I have always dealt with what almost feels like a burning sensation right in the middle of my upper stomach, that comes and goes. I’ve always just lived off TUMS and Pepto when it flared up, but never put too much thought into it. These last three days, though. That pain flaring up again after meals. Also I have had ongoing hip pain that they believe is snapping hip syndrome, with hip bursitis. That also went completely away during those 3 weeks gluten-free. My husband also made comment of how during those few weeks of eating gluten-free, I didn’t get that 2:00pm fatigue that I got everyday, where I always needed coffee to pick me up. I’m instantly back to being tired, though. Along with dermatitis back on my eyelids within just 3 days 😖

 

So, even if my endoscopy comes back negative. I think it’s safe to say I will definitely be trying to go gluten-free for several months, to give my body a chance to see if all of these things heal. 

[knitty kitty]

Much of the damage to the small intestine is microscopic.  Yes, being off gluten three weeks can cause inconclusive biopsy results. 

Very brave of you to endure the gluten challenge to get a "gold standard" biopsy diagnosis!  

Yes, the use of Tums and Pepto as self medication is common in Celiac Disease.  

I get eczema around my eyes when exposed to gluten or dairy.  

More about how Celiac can affect the skin....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369470/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4066147/

[Wheatwacked]

10 hours ago, KGB1819 said:

I was just blind to it, and what my body was saying.

It is built into our culture.  Look at the commercials.  We will even risk fatal perineal bacterial infection to keep eating gluten.  

Good luck with your endoscopy.  I hope you get sick as a dog so you can end your doubts. 👍

Edited December 3, 2023 by Wheatwacked

[KGB1819]

Another UPDATE:

I met with my GI doctor last week, and he said  since my tTg IGa was elevated, he wanted to do the endoscopy. Which, I had done today.

He said nothing was visibly seen as damage on the endoscopy, but that he took several biopsy’s, which I’ll know the results of in about a week. I’m assuming the biopsy's will be negative. Since typically from what I’ve seen, they can see damaged villi on the endoscope? That being said, regardless, he said he still wants me to start a gluten free diet and give it at least 3 months to see how my body reacts to it. He also said I should ask my doctor about testing me for Sjögren's syndrome, with some of the other symptoms I have. From some of the things I’ve read, there’s a link between that and celiacs.

Even though I’m still waiting on the biopsy results. I was very pleased with my GI doctor. I respected that he encouraged now that I have the biopsies out of the way, that I go ahead and start a gluten-free diet. 

[trents]

It is not necessarily true that the villous lining damage can usually be seen during the endoscopy. Many times it can but it depends on the degree of damage and the resolution of the scope used.

[knitty kitty]

I'm familiar with Dry Eye Disease and Sjogren's Syndrome.  I've found correcting nutritional deficiencies and changing to a Paleo diet has improved symptoms.  

Changing ones diet changes the kinds of bacteria that live in the intestines.  A Paleo diet allows for beneficial bacteria to become more dominant.  The bad carbohydrate-loving bacteria that promote inflammation get starved out, and the beneficial bacteria can flourish.

Correcting nutritional deficiencies found frequently in newly diagnosed Celiacs can improve eye  and overall health.  Vitamin D, Vitamin C,  B vitamins like Cobalamine B12, Thiamine B 1, and Riboflavin B 2, and minerals like zinc and selenium improve eye health.  Deficiencies in some of the B vitamins like Riboflavin and Pyridoxine B 6 cause flakey rashes around the eyes.  The rash around my eyes has disappeared with supplementation of these nutrients.  

Hope this helps!

References:

Association of Primary Sjögren’s Syndrome and Vitamin B12 Deficiency: A Cross-Sectional Case-Control Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7765802/

And...

The Utility of Oral Vitamin B1 and Mecobalamin to Improve Corneal Nerves in Dry Eye Disease: An In Vivo Confocal Microscopy Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9504679/

And...

A Glimpse Into the Microbiome of Sjögren’s Syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9329934/

And...

Vitamin D and Sjögren's Disease: Revealing the Connections-A Systematic Review and Meta-Analysis

https://pubmed.ncbi.nlm.nih.gov/36771203/

And...

Effects of Oral Vitamin B1 and Mecobalamin on Dry Eye Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7508221/

And...

Cutaneous signs of nutritional disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8721081/

[KGB1819]

Thought I’d give everyone an update! 
 

I had an Endoscopy done in the middle of December, following the elevated tTg IGa blood test. Though to the eye, there was no damage, my doctor did call me a couple weeks ago saying my biopsy showed lymphocytes. They said that can be non-specific, but with my blood test, they’re going with celiacs, and they’re going to retest my levels in 3 months.

I appreciate each and every one of your comments, words of advice, and personal experience! 
 

& anyone else who stumbles upon this post in the middle of trying to figure out their diagnosis, it is SO important to know that everybody’s symptoms, and findings can be so different from one another.

I’m so glad I continued to advocate for myself.

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):