Trying to figure out my probability of having celiac disease

[Lredd]

I recently got celiac blood tests completed due to a bunch of symptoms I was having. Some came back positive, some negative.

 

Total IgA was low

ttg, IgA and dgp, IgA were Negative

ttg, IgG and dgp, IgG were positive

 

I’m getting an endoscopy, but was curious if signs are pointing to celiac. Just curious if anyone else had a similar diagnostic process. If I get a negative biopsy, does that just mean I have NCGS? I don’t have anyone in my family who has been diagnosed celiac, but a whole slew of digestive issues. 

[trents]

Welcome to the forum, Lredd!

The igG tests are not as specific for celiac disease as are the igA tests. Yes, if your biopsy is negative I would be looking at NCGS. Keep in mind that some gluten disorder experts believe that NCGS can be a precursor to celiac disease. What are your symptoms? Are any CBC labs, like hemoglobin/hematocrit, or vitamain B12 and D3 out of whack? Lab values that would suggest malabsorption?

[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.

 

 

[Lredd]

23 minutes ago, trents said:

Welcome to the forum, Lredd!

The igG tests are not as specific for celiac disease as are the igA tests. Yes, if your biopsy is negative I would be looking at NCGS. Keep in mind that some gluten disorder experts believe that NCGS can be a precursor to celiac disease. What are your symptoms? Are any CBC labs, like hemoglobin/hematocrit, or vitamain B12 and D3 out of whack? Lab values that would suggest malabsorption?

The reason why I went down this path was actually due to low vitamin D. I got tested and was deficient. I went on a megadose for 12 weeks and retested it and it actually went down. My major symptom has been awful fatigue, but also constant diarrhea, and a pain in my left abdomen that comes and goes and feels like a side stitch or sometimes more stabbing. This has all gotten slowly worse over the last two years since I gave birth to my first child. 

[trents]

Low D3 is probably rampant in the USA population as a whole and the level deemed "normal" when you get serum tested for it is likely well below optimum. Yet, if you were megadosing with it for three months and levels went down, that certainly raises the question of are you absorbing nutrients properly.

[Wheatwacked]

11 hours ago, Lredd said:

My major symptom has been awful fatigue, but also constant diarrhea, and a pain in my left abdomen that comes and goes and feels like a side stitch

That might be Choline deficiency. Major food source is liver, eggs, steak. It is the major salt in bile.  Deficiency can cause poor digestion of fats. Yellow and green stinky diarrhea with floaters.  Not enough Choline can cause Non Alchohol Fatty Liver, something well proven, yet essentially ignored in the US.

For energy try increasing B vitamins.  Celiac Disease is a disease of malabsorption. Your D level resistance points to that.  B vitamins make energy.  Folic Acid is the only B vitamin with a safe upper limit set at 1000 mcg because it has been linked increased cancer risk.  Folate from food is unlimited. At 500 mg a day of B1, B3, B5, Choline and Taurine; and 1000 mcg of B12. you should feel the difference in a few days.

11 hours ago, Lredd said:

I went on a megadose for 12 weeks and retested it and it actually went down.

     Depends on the definition of mega dose.  Doctors often prescribe 50000 IU Vitamin D2 a week.  D2 is only one half bioavailable as D3; they cannot prescribe D3.  I take 10,000 IU daily since 2015.  I don't know what it was then but I was in very bad shape.  I kept increasing, started at 1000 iu a day.  At 8000 a day still no noticible effect. Finally after 3 days at 10,000 I felt it  kick in. Sunshine in a bottle. No missing it.  In 2019 I paid the doctor to test it (he saw no reason) and I was still only at 47 ng/ml.  Currently steady at 80 ng/ml.  Once, I stopped taking it 3 weeks before the test (new doctor tests me quarterly with the other labs) It dropped to 72 ng/ml.  ParaThyroid Hormone is normal. 

     "Ekwaru et al recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL."

Also, just being human gives you a 44% chance of having one or more of the genes identified with Celiac Disease.  It's a matter of time and nutrition.  It appears you are already there.  Vitamin D helps keep them subdued.

Edited July 16, 2023 by Wheatwacked

[Lredd]

@Wheatwacked - this is all so interesting. I was only tested for vitamin d and ferritin because of the fatigue months ago (this is before I went to a gastro specialist). Ferritin was low, but still in range and the vitamin d was 15 (30 was the lowest in range point). I did the weekly 50,000 of d2 and retested and it was 13. After the biopsy in a few weeks, I’m definitely going to push to get other vitamins checked out to get a baseline. 

[Wheatwacked]

Most of the tests for vitamins and minerals don't really reflect cellular status.  For example, 98% of the potassium in our bodies is intracellular.

"Potassium (K+) is the major intracellular cation, with 98% of the total pool being located in the cells at a concentration of 140-150 mmol/l, and only 2% in the extracellular fluid, where it ranges between 3.5 and 5 mmol/l."

There is more potassium in the ribs, ileac crests and scapulas than there is calcium.  Ferritin could be low because an autoimmune response (think low D) interferes with the production of Intrinsic Factor which we need to absorb B12 and B12 works with Folate to recycle homocysteine back to methionine.  Homocysteine is a product of protein metabolism and high levels (over 18) is considered an independent indicator of cardiovascular inflammation.  Dealing with homocysteine is so important there are three separate pathways. 1)B12 and Folate; 2) Choline: and 3) B6. If one is deficient the others pick up the slack.  Increasing intake of those will reduce your inflammation as well as that omega 3 supplement processed from the green lipped mussels found in the pristene waters of New Zealand.  But significantly CHEAPER, and homocysteine is only one of the functions of those four essential nutrients.  "Essential nutrients"  means that we must get it from external sources.  There are around 40 essential nutrients and twenty of them are absorbed in the small intestine where Celiac Disease damage causes malabsorption.  Vitamin D is one of them so you need large amounts of dietary intake to overcome that.  Sunshine, enough to tan but not burn may be the answer.  In the US there are one million patients with skin cancer, common belief is that it is caused by too much UV light.  There are 51 million suffering autoimmune diseases, including osteoporosis, from low D.  Conumdrom?  At the same time, the intake of iodine in the US has dropped since 1970 to half of what it was and the incidence of cancer has doubled.  As has the prescribing of thyroxine.  Thyroxin,  synthetic hormone has the iodine we no longer get in our food.   Iodine is a major hitman for the immune system to kill off sick and old and defective cells to make room for fresh healing growth.

So my personal conclusion is: Low D + Low Iodine = More autoimmune diseases and cancer.

By the way there is not an "autoimmune system".  It is an out of control immune system attacking our own cells because we don't have enough D to control the immune system.  That 30 ng/ml number is only enough to prevent bowed thighs from rickets ignoring all other functions.  Thank the UK Royal College of Physicians in the 1950's for putting a vitual worldwide clamp on vitamimin D due to an epidemic of infant deaths from a manufacturing error in baby formula.

 

[knitty kitty]

On 7/15/2023 at 12:39 PM, Lredd said:

The reason why I went down this path was actually due to low vitamin D. I got tested and was deficient. I went on a megadose for 12 weeks and retested it and it actually went down. My major symptom has been awful fatigue, but also constant diarrhea, and a pain in my left abdomen that comes and goes and feels like a side stitch or sometimes more stabbing. This has all gotten slowly worse over the last two years since I gave birth to my first child. 

Vitamin D 2 is synthetic Vitamin D.  It is not easily assimilated and utilized by the body.  Vitamin D 3 is much better absorbed and used.  It's important to correct vitamin and mineral deficiencies as soon as possible so no lasting damage will occur.  Your pregnancy may have also depleted your other vitamin and mineral stores as well.

Fatigue, diarrhea and abdominal pain are symptoms of Gastrointestinal Beriberi caused by Thiamine Vitamin B 1 deficiency.  Pregnancy can deplete the mother's stores of nutrients and give them to the baby.  

Doctors are not well educated in nutritional deficiencies.  They fail to attribute symptoms to vitamin and mineral deficiencies.  But in Celiac Disease, the villi in the small intestine are damaged and can no longer absorb nutrients, so vitamin and mineral deficiencies are common in newly diagnosed Celiacs.  Checking for nutritional deficiencies is part of proper follow up care. Blood tests for vitamin deficiencies are not very accurate.  You can have normal blood levels, but still have deficiencies before blood levels reflect a deficiency.  Discuss with your doctor the benefits of taking a B Complex and additional Thiamine (Benfotiamine).

Here's some interesting articles...

Thiamine deficiency in pregnancy and lactation: implications and present perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10158844/

And...

Thiamine deficiency disorders: a clinical perspective

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

And...

Clinical profile of patients presenting with thiamine-responsive upper-gastrointestinal upset: A pointer toward gastric beriberi

https://pubmed.ncbi.nlm.nih.gov/35810577/

And...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

Hope this helps!  Keep us posted on your progress!

[Nikhil12]

The diagnostic process for celiac disease can vary from person to person. In your case, the low Total IgA level might affect the accuracy of the IgA-based celiac tests, but the positive results for IgG-based tests suggest a possibility of celiac disease. The endoscopy will provide more definitive information. If the biopsy is negative for celiac disease, it could indicate non-celiac gluten sensitivity (NCGS) or other conditions. Family history isn't always a reliable indicator. It's important to discuss the results and your symptoms with a healthcare professional for a comprehensive evaluation and proper diagnosis.

[Lredd]

15 minutes ago, Nikhil12 said:

The diagnostic process for celiac disease can vary from person to person. In your case, the low Total IgA level might affect the accuracy of the IgA-based celiac tests, but the positive results for IgG-based tests suggest a possibility of celiac disease. The endoscopy will provide more definitive information. If the biopsy is negative for celiac disease, it could indicate non-celiac gluten sensitivity (NCGS) or other conditions. Family history isn't always a reliable indicator. It's important to discuss the results and your symptoms with a healthcare professional for a comprehensive evaluation and proper diagnosis.

Thanks @Nikhil12 - That is what I am learning. I think I'm just getting a bit anxious and wanting to know a definitive answer. I have my endoscopy next week so should have some answers soon (hopefully). It's just super tough sitting in limbo when you've been experiencing a bunch of symptoms. I know a lot of people on here probably feel the same. 

[Wheatwacked]

While finding Marsh 3 damage to the villi in an endoscopy is the Gold Standard of diagnosing Celiac Disease, not finding it doesn't mean not Celiac, it means they did not see damage. 

 

[Lredd]

Update: I just had my endoscopy and the duodenum looked normal visually. Going to wait on pathology, but I’m assuming it isn’t celiac based on the initial findings. I’ll update after I get the pathology. 

[Scott Adams]

Best to wait because most damage would not visual, unless the damage was pretty bad. 

In any case, given your positive blood test results, to me it looks like your body is mounting an autoimmune reaction to gluten. Even if your biopsy ends up negative, you still may want to consider a gluten-free diet. As mentioned earlier, you may be in the NCGS area now, and later that could turn into full blown celiac disease, which you should avoid if possible.

[trents]

4 hours ago, Lredd said:

Update: I just had my endoscopy and the duodenum looked normal visually. Going to wait on pathology, but I’m assuming it isn’t celiac based on the initial findings. I’ll update after I get the pathology. 

Do you know how many samples were taken during the biopsy and from where. The recommendation of this community is at least four samples be taken from the duodenum and the duodenum bulb. Many GI docs doing the scoping may not be that thorough. Damage can be patchy.

[Lredd]

Thanks, y’all! Appreciate context for all of this since I’m still so new to it.

My GI said she followed protocol and did two passes through the duodenum and took multiple biopsies from different parts because things can be patchy. In addition, she took a biopsy of my stomach just because of the inflammation. 

[Wheatwacked]

On 7/18/2023 at 9:38 AM, Lredd said:

wanting to know a definitive answer

You may not get a "definative" answer from a medical point of view.  I hope you do, but it seems like your body is telling you.  Our bodies don't read the medical and insurance company protocols, and gluten addiction is a powerful thing.  When you think about giving up gluten can you just walk away, like giving up lettuce?  Don't ignore those positive blood tests, even mildly positive.  Do a year gluten free and reevaluate.  It is the only way to tell.

[Lredd]

update: it’s be a lot of follow-up testing and doctor appts. My EGD results showed nothing- all clear. My GI was still confused why my bloodwork was positive though and suggested I do good allergy testing. That was all clear. Then we decided to do gene testing more as a way of eliminating celiac fully. It looks like I’m negative for DQ2 and DQ8 but positive for HLA DQ alleles. The results say I have less than a 1% chance and the genetic risk is extremely low.

I have been gluten free for 4.5 weeks and the biggest thing I’ve noticed is less diarrhea and stomach pains. 

I would be okay to accept a ncgs diagnosis if a doctor could tell me why my bloodwork was positive.

 

Just feeling pretty confused. Anyone else face similar results and went down another path/diagnosis?

[Scott Adams]

We've had a lot of people on the forum who had a positive blood test and negative biopsy, or vice versa, but they improved on a gluten-free diet. In this case it is probably best to stick with the diet, especially if you have the genetic makeup and one positive test, AND your symptoms improve on a gluten-free diet.

[trents]

Eating  truly gluten free is harder than most people imagine. It's easy to adopt a lower gluten diet where major sources are eliminated. It's much harder to avoid hidden sources of gluten and CC (cross contamination). Perhaps this will help you get off on a fast track: