Refractory Celiac?

[Wheatwacked]

In 2018 my vitamin D was 44.7 ng/ml and my AST 23 IU/L. Aug 2021 my vitamin D is 86.9 and AST is 12, ALT is 10. I've been taking 250 mcg vitamin D daily since 2015. So seeing others here with high alt made me look.  Also my homocystein is 18 mcmole/liter which I suspect is due to supplementation of choline and pantothenic acid (B5) in addition to B-complex and B-12 (919pg/ml). I avoid folic acid like the plague, yet my Folate is 11 ng/ml. B5 works along with folate to process homocystein.

Quote

Collectively, the results of the Skaaby’s study confirm and extend the recent work of Wang et al. [4] showing an inverse, independent, association between serum 25(OH)D levels and risk of chronic liver disease mortality over 22 years of follow-up among participants of the Linxian Nutrition Intervention Trials. In addition, the results of the Skaaby’s study also extend some recent observations from case–control studies suggesting that lower 25(OH)D levels are associated with the presence and severity of NAFLD, independently of several potential confounders, including obesity and other features of the metabolic syndrome. Lower 25-hydroxyvitamin D3 levels and increased risk of liver diseases: is there a causal link? | SpringerLink   https://link.springer.com/article/10.1007%2Fs12020-014-0220-3

 

[fllstuart77]

8 hours ago, J Morgan said:

Hi! Thanks for your response. I had some more tests done and I have something called primary biliary cholangities

is that causing the elevated liver

[trents]

2 hours ago, fllstuart77 said:

is that causing the elevated liver

Yes.

[Wheatwacked]

11 hours ago, J Morgan said:

primary biliary cholangities

Do you know your vitamin D status? These articles are a little wordy, but worth the read. Don't assume your doctors are aware of this.

"25(OH)D level is associated with biochemical and histological features in PBC. Pre-treatment vitamin D status is independently related to subsequent response to UDCA. Our results suggest that vitamin D status may have important clinical significance in PBC. " Serum vitamin D level is associated with disease severity and response to ursodeoxycholic acid in primary biliary cirrhosis - Guo - 2015 - Alimentary Pharmacology & Therapeutics - Wiley Online Library   https://onlinelibrary.wiley.com/doi/full/10.1111/apt.13244

"Vitamin D may have a beneficial role in PBC and has been demonstrated to have antiproliferative and antifibrotic effects on liver fibrosis. Genetic studies have provided an opportunity to determine which proteins link vitamin D to PBC pathology. Vitamin D also exerts its effect on PBC through nongenomic mechanisms. "The Role of Vitamin D in Primary Biliary Cirrhosis: Possible Genetic and Cell Signaling Mechanisms   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622384/

[J Morgan]

12 hours ago, Wheatwacked said:

Do you know your vitamin D status? These articles are a little wordy, but worth the read. Don't assume your doctors are aware of this.

"25(OH)D level is associated with biochemical and histological features in PBC. Pre-treatment vitamin D status is independently related to subsequent response to UDCA. Our results suggest that vitamin D status may have important clinical significance in PBC. " Serum vitamin D level is associated with disease severity and response to ursodeoxycholic acid in primary biliary cirrhosis - Guo - 2015 - Alimentary Pharmacology & Therapeutics - Wiley Online Library   https://onlinelibrary.wiley.com/doi/full/10.1111/apt.13244

"Vitamin D may have a beneficial role in PBC and has been demonstrated to have antiproliferative and antifibrotic effects on liver fibrosis. Genetic studies have provided an opportunity to determine which proteins link vitamin D to PBC pathology. Vitamin D also exerts its effect on PBC through nongenomic mechanisms. "The Role of Vitamin D in Primary Biliary Cirrhosis: Possible Genetic and Cell Signaling Mechanisms   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622384/

Hi! Yes, I do. It is well within the normal range. This is one of the first things they checked. 

[Wheatwacked]

"Normal range", according to NIH, is only enough to prevent rickets and osteomyelitis. All other benefits are disregarded as insuffient evidence. Our species evolved spending most of the day in sunlight. Only after the industrial revolution did it become normal to spend our daylight hours indoors. There is no profit in reducing disease by increasing vitamin D levels, so who is going to spend $ millions researching it? NIH recommends 600 iu, but increasing that to 2100 iu/day could reduce cancer in men by 17%.

"an increment of 25 nmol/L in predicted 25(OH)D level was associated with a 17% reduction in total cancer incidence...The vitamin D supplementation necessary to achieve a 25(OH)D increment of 25 nmol/L may be at least 1500 IU/day."   Prospective Study of Predictors of Vitamin D Status and Cancer Incidence and Mortality in Men | JNCI: Journal of the National Cancer Institute | Oxford Academic (oup.com)  https://academic.oup.com/jnci/article/98/7/451/2522019?login=true 

[GodsGal]

On 6/19/2021 at 12:10 PM, J Morgan said:

Thank you so much for your response. I totally agree that it could be dairy related. I stopped eating dairy too. Literally all I eat ATM is fresh fruit, eggs, and nutritional shakes. Everything is gluten, soy, lactose and corn free. I know it takes a while for the lactose to clear your body so maybe I will feel better soon.  

8.5 years is a long time!!  IDK if it is COVID related. I changed my diet after my symptoms started in the hopes of solving the problem. 

Hi! 

Have you checked the non-food sources of gluten? Any lotion, cosmetics, detergent, soap, or pet food sources? 

Also, a lot of people react to the protein in milk (casein). A lot of lactose free and "non-dairy" products still contain casein. 

I hope you feel better soon! That sounds rough. Keep us posted!

[fllstuart77]

Most cases of both types of refractory celiac disease occur in older patients who are not diagnosed until later in life. Typically, they suffer symptoms for many years until severe pain develops and abnormalities such as severe anemia are discovered. Finally, celiac disease is pinpointed as the cause. Refractory celiac disease only appears in patients who have not been on a gluten-free diet or have not followed the diet correctly for decades.

[Liz Barnard]

On 6/19/2021 at 5:14 PM, J Morgan said:

The lump is not a lipoma-2 radiologists have been very clear of that. Just a weird buldge? I’m having some neuro issues now (lots of muscle spasms/numbness/tingling in my arms and legs and parts of my abdomen) and am wondering if it is a paralyzed muscle…just hanging there all flabby like?

Might you have developed an autoimmune disorder?  Ask for a CRP blood test from your MD and see what your inflammatory markers are. They should be below 10. I understand that there is a connection between gluten and autoimmune disorders so worth ruling it out.

[Earlene Xavier]

21 minutes ago, Liz Barnard said:

Might you have developed an autoimmune disorder?  Ask for a CRP blood test from your MD and see what your inflammatory markers are. They should be below 10. I understand that there is a connection between gluten and autoimmune disorders so worth ruling it out.

Celiac disease is an autoimmune disease!

[Liz Barnard]

15 minutes ago, Earlene Xavier said:

Celiac disease is an autoimmune disease!

Good point! There are quite a few autoimmune disorders, though, and she may have developed others!

[Posterboy]

On 9/5/2021 at 4:46 AM, fllstuart77 said:

Most cases of both types of refractory celiac disease occur in older patients who are not diagnosed until later in life. Typically, they suffer symptoms for many years until severe pain develops and abnormalities such as severe anemia are discovered. Finally, celiac disease is pinpointed as the cause. Refractory celiac disease only appears in patients who have not been on a gluten-free diet or have not followed the diet correctly for decades.

Stuart Et Al,

First off I am no up to date on this thread......so if someone else has mentioned this already I apologize in advance.

But I have found that helping my low stomach acid going undiagnosed/or misdiagnosed as another GI condition helped many of my remaining GI problems after going gluten free.

I would also suggest going dairy (casein really) free as well before you decide you really are a "refractory" celiac.

Many find that leaving out dairy for a month can help many of their remaining GI problems.....

But here is some links on low (NO Stomach Acid) really that might help the next person in line...keep an eye on SIBO too which often develops in those who have Celiac disease and/or Low/NO Stomach acid.

Gluten may not be culprit in nonresponsive celiac disease - Mayo Clinic

IN Fact an old study shows that NO stomach acid in Celiac's occurs at 90+ percent,

Here is that study for anybody who wants to read it.

Gastric morphology and function in dermatitis herpetiformis and in coeliac disease - PubMed (nih.gov)

Recent studies have shown the use of PPIs increase the risk of Celiac disease in PPI users by a figure of four times a non PPI user.

Some Medicine For Stomach Acid Can Increase The Risk Of Celiac Disease | Liver Doctor

This article explains how you can use baking soda to do a home test to see if you stomach acid really too low to begin with and the doctor's are miss diagnosing it....

5 Ways to Test Your Stomach Acid Levels - DrJockers.com

You can try taking some Betaine HCL (powdered stomach acid) to see if it helps your GI problems....

I have been working with my nephew to get him off is long term use of PPIs before he develops either NCGS or Celiac disease.

After years of arguing with me.....I finally got him to take some Betaine HCL with his meals......and what you know it actually HELPED his digestion.

If you want to read a nice overview of how to take Betaine HCL for your lingering GI problems this article summarizes this issue well.

What Is Betaine HCl And Does It Help With Digestion? | Diet vs Disease

I will say always take it with water and a meal.....and start around 3 or 4 capsules and adjust up or down from there...

The average person's stomach produces between 2.5 to 3 grams of stomach acid when digesting a meal.....which works out to between 3 to 5 capsules for most people depending on how low your individual stomach acid is to begin with....

That is where the baking soda test comes in.....the longer it takes for you to burp....the lower your stomach acid is to begin with.

Water drives the process.....for me when I eat water melon......I burp for hours now....because the water in watermelons.....causes me to burp constantly....

That is when I knew my digestion was improving....

If anyone would like to read more about how low or NO stomach acid can be confused for NCGS or Celiac disease I explain these connections in more detail in this blog post.

Is NCGS and/or Celiac Disease Really Low Stomach Acid Misdiagnosed - Celiac.com

I hope this is helpful but it is is not medical advice.

Good luck on your continued journey!

Posterboy,

[trents]

Posterboy, can you provide links please?

[Wheatwacked]

need to paste as plain text, it's a change they recently made in Edge.

[fllstuart77]

"IN Fact an old study shows that NO stomach acid in Celiac's occurs at 90+ percent"

its impossible to have NO stomach acid

if you had no stomach acid then food would not be digested at all

[trents]

5 hours ago, fllstuart77 said:

"IN Fact an old study shows that NO stomach acid in Celiac's occurs at 90+ percent"

its impossible to have NO stomach acid

if you had no stomach acid then food would not be digested at all

Yeah, that sounds fishy.

[Wheatwacked]

Long term use of PPI compouds the malabsorption aspect of celiac disease increasing the risk of malnutrition despite sufficient calorie intake.

Quote

The long-term consequences of chronic PPI use include the potential increased risk of hypocalcemia, hypomagnesemia, Clostridium difficile infections, and pneumonia.   Long-Term Consequences of Chronic Proton Pump Inhibitor Use (uspharmacist.com)   https://www.uspharmacist.com/article/longterm-consequences-of-chronic-proton-pump-inhibitor-use

 

[Liz Barnard]

2 hours ago, Wheatwacked said:

Long term use of PPI compouds the malabsorption aspect of celiac disease increasing the risk of malnutrition despite sufficient calorie intake.

 

Thanks for this, Wheatwacked:
I shan’t sleep well tonight - I’ve been on PPI’s for 25 years! My mother died of a burst stomach ulcer and my GP insists I stay on PPI’s, threatening me with death if I don’t! Don’t feel I have much choice really!

[Wheatwacked]

2 hours ago, Liz Barnard said:

GP insists I stay on PPI’s

So maybe your Celiac caused symptom was misdiagnosed as acid reflux disease, unknow etiology, taking into account your family history. There is a rebound effect of stopping PPI so it is a serious step.    Stopping PPI Drugs Causes Acid Reflux Symptoms (webmd.com)   https://www.webmd.com/heartburn-gerd/news/20090702/stopping-ppis-causes-acid-reflux-symptoms

I started Prednisone in 2012. It took 30 mg prednisone a day to contol my pain enough to get out of bed. Fibromyalgia, I believe.  In 2014 I started Gluten Free diet and supplementing vitamins and minerals as I learned. I started with 250 mcg of vitamin D3. After 6 years my vitamin D plasma is finally up to 84 ng/ml, right around optimum. Not long after starting GFD I was down to 20 Pred, then 10 Pred and am now stable at 5 mg a day plus a slew of vitamins that my diet did not supply. Though I am not a doctor, the potential side effects of the expensive new drugs they want to use instead of prednisone scares me more. After 9 years on prednisone, my black lab, with  congenital hip dysplasia, had no evidence of arthritis. Every other dog I've owned had significant arthitis by 9 years.

Quote

 

In summary, the present study demonstrated, for the first time, a very high frequency of vitamin D insufficiency in patients with PMR and GCA. High frequency of vitamin D insufficiency in polymyalgia rheumatica and giant cell arteritis: preliminary results (europeanreview.org)  https://www.europeanreview.org/wp/wp-content/uploads/574-575.pdf

 

 

[Posterboy]

22 hours ago, trents said:

Posterboy, can you provide links please?

 

20 hours ago, Wheatwacked said:

need to paste as plain text, it's a change they recently made in Edge.

Trents and Wheatwacked,

Trents, Wheatwacked is right....it was a setting in Edge.

Here is some of the citations cited again with links......I don't have time to summarize them again tonight.....so I will try and be brief with just links and a small explanation.

https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/gluten-may-not-be-culprit-in-nonresponsive-celiac-disease/mac-20430035

This link has a nice chart of the pH of certain liquids and/or foods.

https://www.dietvsdisease.org/betaine-hcl/

https://www.verywellhealth.com/achlorhydria-1742373

Achlorhydria aka NO Stomach Acid is a technical term....indicating a pH level the stomach can no longer reach.

Anything above 4.0 pH might be only Hypochlorhydria for example......where a pH of 6.0 might be NO stomach acid etc.

IT doesn't mean you are not producing ANY stomach acid at all....just that it can't maintain an appropriate level....healthy level of at least a pH of 3.0 or better etc.

The normal range of healthy stomach ranges from 1.5 pH to 3.0 pH for example.....so if your stomach can only produce a pH of 4.0 to 6.0 then you could technically be diagnosed with Low or NO stomach acid....

And this is exactly what was studied in Celiac and/or DH patients.

Entitled "Gastric morphology and function in dermatitis herpetiformis and in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/3992169/

Here is the link showing use of PPIs can trigger an increase in Celiac and/or NCGS disease.

https://www.liverdoctor.com/medicine-stomach-acid-can-increase-risk-celiac-disease/

This link talks about Achlorhydria and give a nice overview.

https://www.belmarrahealth.com/achlorhydria-no-stomach-acid-causes-symptoms-treatment/

It lists the ranges of pH that can be found in a stomach and why a pH of 4.0 to 6.0 pH can be described as first as Hyphochlorhydria (Low) or Achlorhydria (NO) stomach acid when the pH is high as 6.0 etc...

IT doesn't mean you can produce NO stomach acid.....but it does mean you can't produce enough stomach acid to digest proteins.....which normally looses it (stomach acid) ability to denature or digest proteins into  harmless peptides....

The figure I have seen in the past is around pH 3.2.....outside the range of a Normal, healthy stomach acid level...and why any pH higher than that someone is considered to have Hypochlorhydria....

Here are some quick links I didn't include or site before....

Eva Untersmayr has done the most work on Low stomach acid and food allergens.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5467726/

https://pubmed.ncbi.nlm.nih.gov/18539189/

Here is a nice overview of the "Protocol of how to use Betaine HCL" to raise your stomach acid pH.

Entitled "Meal-Time Supplementation with Betaine HCl for Functional Hypochlorhydria: What is the Evidence?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7238915/

See there nice chart toward the bottom of this article entitled "Basic Protocols for using Betaine HCL" aka Powdered Stomach Acid.

I have tried to include a link for every article cited before that Edge converted to plain text.....If I have left one out I apologize....

But this will give those following this thread enough information and resources now to look them up for themselves.

I hope this is helpful but it is not medical advice.

Posterboy,

[Blue-Sky]

PPI block the stomachs ability to release acid. There are high acid and low acid foods and an index for that. Since the stomach helps balance the bodies acid/base status I can see why PPI could be problematic.

Proteins aren't digested in the stomach entirely, which is fine as the intestine is long and bacteria can digest things effectively. 

I wouldn't take any supplement that effects stomach acid levels without talking to a doctor. You might make stomach ulcers worse or something like that. 

Baking soda might reduce inflammation for some people and it does the opposite of Beta HCL I think. 

[Wheatwacked]

20 hours ago, Liz Barnard said:

my GP insists I stay on PPI’s, threatening me with death if I don’t!

Personally I prefer alka selzer. As a weird side effect, aspirin makes me hungry

[Liz Barnard]

4 hours ago, Wheatwacked said:

Personally I prefer alka selzer. As a weird side effect, aspirin makes me hungry

That is weird! I am about to add buffered aspirin into my regime to help with high BP as steroids have driven up my blood pressure and I am getting horrible side effects from the meds.

[trents]

37 minutes ago, Liz Barnard said:

That is weird! I am about to add buffered aspirin into my regime to help with high BP as steroids have driven up my blood pressure and I am getting horrible side effects from the meds.

I have never heard of aspirin being used to reduce blood pressure. Be aware that both cortico steroids (I assume you are not taking anabolic steriods) and aspirin are anti-inflammatory agents. A certain amount of inflammation is healthy and good. It is part of the body's immune system response and it plays an important part in healing. Too much inflammation or inappropriate inflammation is a bad thing but excessive suppression of inflammation with medication is a dangerous thing. For instance, when you suppress inflammation for too long with say, Ibuprofin, you risk getting GI ulcers because low level inflammation is necessary for the body to initiate the maintenance of the protective lining of the stomach and small bowel. 

[Posterboy]

2 hours ago, trents said:

I have never heard of aspirin being used to reduce blood pressure. Be aware that both cortico steroids (I assume you are not taking anabolic steriods) and aspirin are anti-inflammatory agents. A certain amount of inflammation is healthy and good. It is part of the body's immune system response and it plays an important part in healing. Too much inflammation or inappropriate inflammation is a bad thing but excessive suppression of inflammation with medication is a dangerous thing. For instance, when you suppress inflammation for too long with say, Ibuprofin, you risk getting GI ulcers because low level inflammation is necessary for the body to initiate the maintenance of the protective lining of the stomach and small bowel. 

 

3 hours ago, Liz Barnard said:

That is weird! I am about to add buffered aspirin into my regime to help with high BP as steroids have driven up my blood pressure and I am getting horrible side effects from the meds.

Liz and Trents,

There is some evidence to suggest Low dose Aspirin at night can help BP.....generally considered to be best when taken at night time to lower BP.

My doctor's recently started me on 325 EC to be safe on my stomach.....and to help thin my blood.

Here is the research on it...

https://pubmed.ncbi.nlm.nih.gov/28684123/

I am thinking after a while I will switch back to the St. Joe 81 because it has a much safer long term profile....

Also Liz,.... you should look into Riboflavin for your BP issues,.

My BP used to be chronically high until I took some Riboflavin aka Vitamin B2.

Here is a nice overview of how B2 can help elevated Homocysteine levels and BP.

https://jeffreydachmd.com/2015/11/riboflavin-hypertension-mthfr/

Liz when your urine turns a "Bright Yellow" you have got enough Riboflavin in your system.....you can alternate days when this happens.....to see how quickly it changes your urine color.

I find if I take Riboflavin now it will change my urine to a yellow color in 6 hours hours or less.

Every since I took some B2 my BP has been well controlled.  I was able to lower my BP medicines from as many as 3 down to only 1 medicine for BP with excellent results!

I hope this is helpful but it is not medical advice.

Posterboy,