ABP2025

21 hours ago, knitty kitty said:

Sorry about that link.  It was meant for a different post.  

Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.  

Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies.

A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.  

Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.  

Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy.

Keep us posted on your progress!

I wish more doctors emphasized on the importance of Vitamin D. I'll increase the Vitamin D3 supplementation from 2000 IU to 4000 IU. I'll also try Benfotiamine and see if my symptoms improve. Thanks for your suggestions.

12 hours ago, knitty kitty said:

@ABP2025,

Here's some studies and articles that will help you learn more about thiamin and all... I will write more later.

It's possible that your antibiotic for giardiasis has caused thiamine deficiency.  

https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/

And...

https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/

And...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

and...

Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial

https://pubmed.ncbi.nlm.nih.gov/31746327/

 

 

 

Thanks sending me additional links including how to test for thiamine deficiency. With regards to your first link, I wasn't diagnosed with giardiasis and I didn't take antibiotic for it. I try to generally stay away from antibiotic unless absolutely necessary as it might affect gut health. For treating phimosis, the doctor didn't give me antibiotics. I need to have a circumcision surgery which I haven't got around to schedule it.

23 hours ago, trents said:

The only vegetable sources of B12 are some fermented bean products using a certain microbiotic culture. It is next to impossible to get adequate B12 from vegetable sources without supplementation. Same with D3. Some mushrooms can make D3 when exposed to UV light. Are you vegetarian or vegan? Do you do dairy and eggs or no animal products at all?

Low B12 and D3 could definitely cause or contribute to many of the symptoms you have been experiencing but would not cause celiac disease. It is more likely the other way around, especially if you are a vegetarian eating no animal products. Many of your symptoms seem neurological in nature. It is well known that the B vitamin complex is vital to neurological health but so is D3. https://pmc.ncbi.nlm.nih.gov/articles/PMC9820561/

I'm not vegan, just vegetarian. I consume dairy but not egg. So I have started including some Vitamin D fortified milk as well as a multivitamin with 2000 IU daily. For Vitamin B12, like you said it's very difficult to get it from just vegetarian sources and have started consuming Vitamin B Complex daily. My PCP was worried when my Vitamin D result came out as It was 3.7 ng/ml last year. He said that being low for a lengthy time could have done some damage to the body over the years. Now, though Vitamin D level has improved after the supplements, I'm not sure if the neurological damage has already been done. I'll continue including the supplements and see if my symptoms improve. I'll also get tested for celiac to see if I need to be in gluten-free diet.

19 hours ago, Scott Adams said:

So keep eating gluten daily, lots of it, until all celiac disease screening is completed. A negative biopsy would not rule out NCGS. 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.

 

Got it. Thanks Scott. I'll set up an appointment with a GI after the holidays and get all the celiac disease screening done. Thanks to this amazing forum and to all who have answered my question, I now know what my next steps are.

18 hours ago, trents said:

ABP2025, there are no definitive diagnostic tests for NCGS. It is arrived at by first ruling out celiac disease despite continuing symptoms from gluten ingestion.

Aah it sucks that there's no definitive way to confirm NCGS or celiac. I've found a GI clinic that is covered by my insurance and I'll contact them after the holidays to setup an appointment. I hope to get some sort of clarity with further tests. 

On 12/25/2024 at 8:23 PM, knitty kitty said:

@ABP2025,

Have you thought about having a DNA test to check for known Celiac genes?   

I do hope you will make sure that you are getting sufficient gluten to provoke an autoimmune response strong enough that the antibodies can be measured in the blood.  See article below.

Celiac disease affects the absorption of nutrients,  including vitamins and minerals.  Your symptoms may be associated with thiamine deficiency.   Migraines and peripheral neuropathy, phimosis (yes, even this), and white spots on the brain are seen in thiamine deficiency.  Celiac disease disrupts the absorption of all the essential nutrients, but thiamine can be quickly depleted, in as little as three days.  Thiamine deficiency can occur even if blood tests show normal levels.  Thiamine deficiency can affect antibody production.  

 

 

Thanks @knitty kitty. I didn't know about thiamine deficiency before you had mentioned it. I'm doing more research into what it is and how I can test for that deficiency. Is Vitamin B1 test the best way to find it? I saw that there is another test: Erythrocyte transketolase activity coefficient (ETKAC) assay to test for thiamine deficiency but I'm not sure how that test is done. Is that something I can take on my own or do I need GI referral. If it does turn out that I'm thiamine deficient, does that confirm that I have celiac disease or could it just mean that I have not been consuming Vitamin B1 rich food and once I address that with a supplement or food, I would no longer be thiamine deficient?

Also full disclosure, I'm a vegetarian and only last year I found out that my Vitamin D level was very low. It was 3.7 ng/ml and the ideal range is >29.9 ng/ml. After a year of taking multivitamin supplement, my Vitamin D level has gone up to 27 ng/ml. Though it's better than 3.7 ng/ml, it's still below the range. I'm not sure for how long my Vitamin D level was around 3.7 ng/ml before 2023 as I didn't have my Vitamin D test taken prior to that.

My doctor also wanted to check my Vitamin B12 level as I might not be getting enough of it from vegetarian sources. When I took that test last year, Vitamin B12 was 247 pg/ml and ideal range is 200-1100 pg/ml. So it's still within the range though it's on the lower end of the ideal range. I also have recently started taking vitamin b-complex tablets daily. I've never checked other Vitamin B levels including Vitamin B1.

Do you know if such a very low level of Vitamin D and moderately lower level of Vitamin B12 would cause celiac disease or may contribute to some of the symptoms I've been experiencing?

Regarding the DNA test to test celiac genes, are you referring to HLA DQ2 and HLA DQ8 tests? As soon as I got the result where my IgG was above range, I had ordered the "HLA Typing for Celiac Disease" test in Quest Diagnostics which measures HLA DQ2 and HLA DQ8. The test is 2 weeks from now and I'll post my results here once I receive them.

18 hours ago, trents said:

By specificity, it's not so much that elevated dgp-igg can be caused by other diseases but that it can be a false positive or a transitory immune system reaction to gluten. I believe it can also point to NCGS or a transition from NCGS to celiac disease in some cases. Some experts feel that NCGS can be a precursor to celiac disease. If biopsies are negative for celiac disease and you decide to continue with normal gluten consumption, I would have regular antibody testing done to keep an eye on those DGP-IGG levels to see if they remain high and to see if some of the IGA levels start to creep up. Elevated dgp-igg levels seem to be related in some way to an unhealthy immune system reaction to gluten. https://healthmatters.io/understand-blood-test-results/anti-deamidated-gliadin-igg-dgp-igg

By the way, migraines are a common symptom of celiac disease. There is also, IMO, this misconception out there that NCGS is uncomfortable and inconvenient but not damaging to body systems and so you can be cavalier about gluten consumption if you have NCGS. I don't buy into that. I think the neat black and white categories that we have used to separate NCGS from celiac disease are doing many a disservice.

After I get the endoscopy done, I’ll try to be in gluten-free diet even if I test negative for celiac disease or NCGS to avoid any complications. It does suck because I love wheat breads and Indian breads like rotis and naans, lol. I guess I have to jump to gluten-free options for those. Again, thanks for all your help.

8 hours ago, trents said:

From your first post, tests 1-4 are individual antibody tests used to detect celiac disease. #5 is what we call "total IGA" which is used to check for IGA deficiency. If a person is IGA deficient, it can skew their individual IGA test scores down toward the negative range and generate false negatives. You are not IGA deficient. Test #4 from your first post, the tTG-IGA, is the most popular test ordered by physicians and considered to be the best single test for diagnosing celiac disease. It is relatively inexpensive to run and it combines excellent specificity with excellent reliability. You were negative for this one. The reason could have been, however, that you had been eating a reduced gluten diet. The one positive test you had, the DGP-IGG, is not as specific for celiac disease as is the tTG-IGA but certainly can indicate that you do have celiac disease, particularly if you were skimping on gluten when the blood draw was done.

The endoscopy with biopsy of the small bowel lining is considered to be the gold standard of diagnostics for celiac disease. But it still requires that you have been eating generous amounts of gluten for weeks/months to be valid. Otherwise, the villous lining begins to heal and nothing shows from the biopsy. The problem might be finding a GI doc willing to do an endoscopy/biopsy on the elevated DGP-IGG alone. He/she may want to repeat the antibody panel first.

Your other option is to forego an official celiac diagnosis and commit to seriously eating gluten free and see if your symptoms improve. You would not know whether you have celiac disease or NCGS but the antidote for either is the same.

You never mentioned your symptoms. What led you to get tested for celiac disease?

Thanks for the detailed explanation. You had mentioned that DGP-IGG might not be specific for celiac disease. Do you know what other diseases could abnormal range of DGP-IGG indicate? I'll get tests done for those diseases as well. 

With respect to celiac diagnosis, I will start searching for a GI doc and get an endoscopy/biopsy done. Recently I've been having some concerning symptoms like numbness in my face, hands, and legs as well as chronic migraine. I saw a neurologist and got my brain MRI done. Nothing major was found in the MRI except some signs of migraines. I'm also having the issue of phimosis. Frustrated that we couldn't get to the bottom of what's causing numbness and headaches, I took some extensive blood work including celiac test in the effort to find the root cause and these tests were not ordered by a doctor. Not sure DGP-IGG being above range explains the numbness and headaches I have been experiencing and they could be two separate issues altogether. That's why I was curious what other disease could cause DGP-IGG to be above normal. 

8 hours ago, Scott Adams said:

It looks like you had a positive blood test for celiac disease, so the next step could be an endoscopy to confirm celiac disease. 

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. 

 

 

Thank you so much Scott. I read your article and it was very informative. I'll find a GI doctor to review the results and get an endoscopy to confirm celiac disease. Based on my results, could it still be NCGS?

I would say I wasn’t on a gluten free diet but I’m not sure if I was consuming enough gluten before I took the tests. How long should I be consciously including gluten in my diet before I take the test?

4 hours ago, trents said:

Was the blood draw made while you were still consuming regular amounts of gluten and had been doing so for at least a period of months? Getting blood antibody tests after already having embarked on a gluten free diet or even limiting gluten consumption will invalidate testing.

I would say I wasn’t on a gluten free diet but I’m not sure if I was consuming enough gluten before I took the tests. How long should I be consciously including gluten in my diet before I take the test?

In addition to regular lipid blood tests, I took some celiac tests last eeek and these are the results:

1. Celiac - Deamidated Gliadin IgG - 34.5 U/mL - Above range 

2. Celiac - Deamidated Gliadin IgA - <1.0  - Normal

3. Celiac - Tissue Transglutaminase IgG - <1.0  - Normal

4. Celiac - Tissue Transglutaminase IgA - <1.0  - Normal

5. Immunoglobulin A IgA - 143 mg/dL - Normal

What does the above results mean? What next steps can I take to diagnose if I have celiac or NCGS or something else?