Help with blood results?

[MamaRiz]

I don't want to go into the whole story, but my doctor put in a bunch of blood tests based on my symptoms, and the only one that came back positive was the below for celiacs. She referred me to the gastro who of course did the biopsy. He took 8 samples, but the biopsy came back as negative. Looking at the forum here, it seems like that's not uncommon. 

The gastro has the opinion that I have Celiacs based on the blood results, even tho biopsy was negative and not all my results were positive (see ttg IGA). He wants to test blood again in six months (if I go gluten free, then I do a gluten challenge 6 weeks before). He thinks I am very early stage.. which is possible since I only started feeling very unwell with gastro symptoms last summer. I'm 34F. 

My Primary Care doctor, who is very good and specializes in nutrition, wants to do further testing for genetic markers and one more diagnoistic test (EMA) before giving me the celiacs label. But she said obviously gluten is giving me issues. Her approach would be to do a full elimination diet then a full stool panel after and then begin reintroducing different types of foods. My gut needs a lot of healing, in her opinion. Although the scope didn't show any damage thru my duodenum.

I guess I'm a bit in denial about the celiacs diagnosis. And I am having a hard time understanding the blood results based on my own research, and the ttg IGA not really matching what I see in google. I was hoping someone here would take a look at the results and let me know what you think? 

Thanks so much in advance. 

 

Results (reference range in parentheses):

Anti- Gliadin IGA (0-25RU/ml) - 83.7

Anti-Gliadin IGG (0-25RU/ml) - 38.3

 

TTG IGA (<=20 RU/ml) - 14.6

TTG IGG (<1.0 ratio) - <1.0

[TTG IGA the gastro said is like a weak positive, although lab didn't say that]

 

IGA (.07-4.0g/L) - 1.38

[trents]

You are blessed in that your physician was knowledgeable enough and thorough enough to run a full celiac panel rather just the tTG-IGA. Some people have atypical immune system responses to gluten but actually do have celiac disease. Thus, the value of running more tests than just the tTG-IGA. And the genetic and stool testing is certainly appropriate in this case to see if there is supporting evidence to corroborate a celiac diagnosis.

I agree with the conclusion of your GI doc that you have some weak positives and are in the beginning stages of celiac disease. The other possibility is that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. celiac disease must first be ruled out. They share many of the same symptoms, however, and the antidote is the same, namely, total elimination of gluten from your diet for life.

At any rate, the ultimate test will be to trial a gluten free diet and see if your symptoms improve. But as you know, not until all testing has been completed.

Edited April 18, 2022 by trents

[RMJ]

4 hours ago, MamaRiz said:

The gastro has the opinion that I have Celiacs based on the blood results, even tho biopsy was negative and not all my results were positive (see ttg IGA). He wants to test blood again in six months (if I go gluten free, then I do a gluten challenge 6 weeks before). He thinks I am very early stage.. which is possible since I only started feeling very unwell with gastro symptoms last summer. I'm 34F. 

My Primary Care doctor, who is very good and specializes in nutrition, wants to do further testing for genetic markers and one more diagnoistic test (EMA) before giving me the celiacs label. But she said obviously gluten is giving me issues. Her approach would be to do a full elimination diet then a full stool panel after and then begin reintroducing different types of foods. My gut needs a lot of healing, in her opinion. Although the scope didn't show any damage thru my duodenum.

 

I don’t understand why you’d go gluten free then do a challenge for the repeat blood tests.  I would think you’d go gluten free to see if your antibody levels decreased. That would be an indicator that gluten is a problem for you.

I also don’t know why you’d do a full elimination diet.  Why not just do the simplest thing first, cut out gluten and see if you feel better?

The EMA test looks at the same molecule as the TTG test.  Some labs only run it to confirm a positive TTG IgA. The genetic marker test could be useful, although only a fraction of people with celiac markers actually develop celiac disease.  

[MamaRiz]

10 hours ago, RMJ said:

I don’t understand why you’d go gluten free then do a challenge for the repeat blood tests.  I would think you’d go gluten free to see if your antibody levels decreased. That would be an indicator that gluten is a problem for you.

I also don’t know why you’d do a full elimination diet.  Why not just do the simplest thing first, cut out gluten and see if you feel better?

The EMA test looks at the same molecule as the TTG test.  Some labs only run it to confirm a positive TTG IgA. The genetic marker test could be useful, although only a fraction of people with celiac markers actually develop celiac disease.  

Thanks so much for your response.

I feel like the gastro logic is confusing about the waiting 6 months. I think what he was trying to say if I keep up my same diet they would test to see if the antibodies increased? And if I stopped gluten, I would do a challenge to see if I would still have an antibody reaction? My primary doctor saw that recommendation and said: why wait 6 months let's finish testing now. 

The plan is to go gluten free once I finish testing. And then full elimination diet once I won't be traveling and I have time to do it. I think her approach is to heal the gut and do a full stool panel afterwards to see what's going on with bacteria and other things. 

As for genetic testing: my understanding is if don't have the gene, then I can't have celiacs? And if I do have the gene there is a chance I could have celiacs?

[trents]

"As for genetic testing: my understanding is if don't have the gene, then I can't have celiacs? And if I do have the gene there is a chance I could have celiacs?"

Correct. But I'm not sure not having the genes rules out NCGS. And research is suggesting there may be more genes involved in celiac disease than were originally identified. I think that whole piece is in flux now.

Edited April 19, 2022 by trents

[MamaRiz]

14 hours ago, trents said:

You are blessed in that your physician was knowledgeable enough and thorough enough to run a full celiac panel rather just the tTG-IGA. Some people have atypical immune system responses to gluten but actually do have celiac disease. Thus, the value of running more tests than just the tTG-IGA. And the genetic and stool testing is certainly appropriate in this case to see if there is supporting evidence to corroborate a celiac diagnosis.

I agree with the conclusion of your GI doc that you have some weak positives and are in the beginning stages of celiac disease. The other possibility is that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. celiac disease must first be ruled out. They share many of the same symptoms, however, and the antidote is the same, namely, total elimination of gluten from your diet for life.

At any rate, the ultimate test will be to trial a gluten free diet and see if your symptoms improve. But as you know, not until all testing has been completed.

Thanks for the response!

The only thing I'm wondering is: would I have an immune response if it wasn't celiacs? I can't find a straight answer to that question. 

My aunt is a dietitian who works in a hospital, and her opinion is if I'm having symptoms and a biopsy is negative then it can't be celiacs because the biopsy is the "gold standard". But the gastro didn't feel that way. My primary seems to think it is possible to be a temporary immune response (leaky gut, stress).

I guess I'm left feeling like celiacs is ambiguous to diagnose

[trents]

We're finding out that gluten-related diseases are presenting more complexities than we originally thought. They are defying our neat little categories and boxes. Some celiac disease experts are convinced that celiac disease is just a subcategory of gluten sensitivity. In other words, all those with celiac disease suffer from gluten sensitivity but only about 10% of those who are gluten sensitive develop the form of gluten sensitivity we know as celiac disease. And other experts feel that NCGS is or can be a precursor to celiac disease.

We have no lack of people on this forum who have positive antibody tests but negative biopsies and vice versa. So, the biopsy may not be the "gold standard" it was once thought to be. We currently have no tests to detect NCGS but if it is not an immune system response then why does it result in neurological disease in some people when it goes unattended? Maybe we just haven't discovered what part of the immune system is involved. Maybe we still have things to learn about the immune system.

Edited April 19, 2022 by trents

[Wheatwacked]

7 hours ago, MamaRiz said:

why wait 6 months let's finish testing now.

Can you clone your doctor and distribute her among us?

First, I think that the myriad of presentations of celiac disease is because everyone eats a slightly different combination of foods. Estimates vary but upwards of 30% of the world population have the HLA-DQ2 or HLA-DQ8 alleles yet only just over 1% are diagnosed with Celiac Disease. On the other hand, some 10% are being diagnosed with Non Celiac Wheat/Gluten Sensitivity.

Higher plasma levels of vitamin D ( around 70 ng/ml) have been shown to moderate the autoimmune system. Low or deficient vitamin D is nearly ubiquitous in patients. It doesn't help that most research into vitamin D only reports less than or greater than 29 ng/ml and the tolerable upper limit is set at 4000 IU and raising the spectre of hypervitaminosis, The RDA for everyone from 1 year old to 70 years old is 600 IU ( 15 mcg) because that is enough to maintain bone health and normal calcium metabolism in healthy people.

Then in the 6 to 20 years it takes to be diagnosed with celiac disease there is malabsorption and depending on a persons food choices different levels of essential vitamins and minerals deficiencies causing different symptoms. Merck manual recommends supplementing obvious deficiencies but that seems to be generally ignored. I've looked at numerous different multivitamins designated for Celiac Disease but most of those are ridiculously expensive (one was 4 capsules a day at a cost of $113 a month) and they still have gaps. Geritol Multivitamin in my opinion at $10 for 100 days worth is the best value I've come across and even it does not deal with the world wide issues of not enough potassium and choline in our diets.

Then there is the omega 6 to omega 3 ration in the foods we choose. Omega 6 is needed to create inflammation and blood clotting to fight infection. The optimum is three omega 6 to 1 omega 3. The ratio in the typical western diet is 25 omega 6 to 1 omega 3. 

Quote

Epidemiological and clinical evidence affirms that the consumption of diets with elevated omega-6/omega-3 fatty acid ratios (ω-6/ω-3 FARs) to be associated with an increased risk for hypertension, cardiovascular disease (CVD), diabetes and other chronic diseases    https://lipidworld.biomedcentral.com/articles/10.1186/s12944-018-0723-7

Quote

Organic milk has significantly higher proportions of omega-3s (62%) than conventional milk (Benbrook et al., 2013). Moreover, the ratio of omega-6 to omega-3 fatty acids also is significantly lower in organic milk (2.3 compared with 5.8). This study demonstrates what omega-3 ratios may be achievable on other farms around the globe that have increased access to pasture and reduced use of grains.   https://www.milkgenomics.org/?splash=getting-omega-3-fatty-acids-milk

Exploring celiac disease candidate pathways by global gene expression profiling and gene network cluster analysis

The role of vitamin D in autoimmune diseases: could sex make the difference?

 

[MamaRiz]

7 hours ago, trents said:

We're finding out that gluten-related diseases are presenting more complexities than we originally thought. They are defying our neat little categories and boxes. Some celiac disease experts are convinced that celiac disease is just a subcategory of gluten sensitivity. In other words, all those with celiac disease suffer from gluten sensitivity but only about 10% of those who are gluten sensitive develop the form of gluten sensitivity we know as celiac disease. And other experts feel that NCGS is or can be a precursor to celiac disease.

We have no lack of people on this forum who have positive antibody tests but negative biopsies and vice versa. So, the biopsy may not be the "gold standard" it was once thought to be. We currently have no tests to detect NCGS but if it is not an immune system response then why does it result in neurological disease in some people when it goes unattended? Maybe we just haven't discovered what part of the immune system is involved. Maybe we still have things to learn about the immune system.

Thanks for the conversation starter! It's a difficult thing to understand, and I will be doing more research while waiting for more information from the doctor.

It's a long process. But thankful I got some answers quickly about the gluten immune response because for sure I wasn't thinking gluten was an issue for me when she did the tests.