Refractory Celiac?

[Wheatwacked]

Methotrexate, a Disease-modifying antirheumatic drugs (DMARD) used extensively to reduce glucocortisones (prednisone) actually raises homocysteine. Prednisone use reduces homocysteine. So by using methotrexate to reduce steroids to control inflamation it effectively increases the risk of heart attacts and stroke. Counterproductive, ya think? DMARDs are profitable, prednisone is not.

To reduce homocysteine> Increase food sourced folate (beans are good) and supplement Pantothenic Acid.  All the B vitamins take a role. Folate is the primary for homcystien metabolism and uses ATP to do it. When there is insufficient folate B5 (pantothenic acid) steps up. B5 is the precurser to CoA which is what converts glucose to ATP in the Krebbs cycle, the ultimate energy source of all life. Folic acid is often used to supplement folate, but it needs to be processed first in the liver to become folate, often incompletely, and is linked to an increase in prostate cancer.

I am not a doctor and could be wrong but I don't think so. My homocystein is in the normal range (albeit the top end) and my PCP is perplexed. She expected much higher and like most doctors believes my BP is a result of the corticosteroid, it may be but the benifits (I function pain free) far outweighs the presumed negative.  I take 5 mg prednisolone (used to take 5 mg prednisone, same difference) a day to control pain (fibromyalgia?), and alka selzer (aspirin also reduces homocystein) for breakthrough pain. 

As I mentioned before, my black lab was on prednisone for his entire life, in good health with no sign of arthritis. He died of degernerative myelitis at 9 1/2 years.

BP meds did not affect my blood pressure but did cause dry eyes (amlodipine) and an inguinal hernia (persistant cough from lisinopril) and excessive urination so were discontinued (actually my doctor told me to find another PCP)

Sorry for the rant.

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If you have more than 50 mcmol/L, the excess homocysteine may damage the lining of your arteries (blood vessels that carry oxygen-rich blood throughout your body). High levels of homocysteine can also lead to blood clots or blood vessel blockages. Artery damage or blood clots significantly raise your risk of heart attack.  Homocysteine: Levels, Tests, High Homocysteine Levels (clevelandclinic.org)   https://my.clevelandclinic.org/health/articles/21527-homocysteine

 

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Methotrexate is a DMARD, Disease-modifying antirheumatic drugs. " Other medicines, such as pain relievers, nonsteroidal antiinflammatory drugs (eg, ibuprofen or naproxen), and, sometimes, prednisone, are given to provide faster relief of ongoing symptoms. DMARDs are often used in combination with these medications to reduce the total amount of medication needed and to prevent damage to joints.   https://www.uptodate.com/contents/disease-modifying-antirheumatic-drugs-dmards-in-rheumatoid-arthritis-beyond-the-basics

 

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Dietary folate deficiencies and drugs that interfere with folate metabolism, eg, methotrexate, ...inhibits dihydrofolate reductase... lead to accumulations and cellular effluxes of homocysteine, causing increases in circulating homocysteine levels (Ueland and Refsum, 1989).   https://www.nature.com/articles/3780275

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 in the six patients continuing to receive steroids orally, homocysteine plasma levels decreased further https://ard.bmj.com/content/62/7/694

 

[Liz Barnard]

8 hours ago, Wheatwacked said:

Methotrexate, a Disease-modifying antirheumatic drugs (DMARD) used extensively to reduce glucocortisones (prednisone) actually raises homocysteine. Prednisone use reduces homocysteine. So by using methotrexate to reduce steroids to control inflamation it effectively increases the risk of heart attacts and stroke. Counterproductive, ya think? DMARDs are profitable, prednisone is not.

To reduce homocysteine> Increase food sourced folate (beans are good) and supplement Pantothenic Acid.  All the B vitamins take a role. Folate is the primary for homcystien metabolism and uses ATP to do it. When there is insufficient folate B5 (pantothenic acid) steps up. B5 is the precurser to CoA which is what converts glucose to ATP in the Krebbs cycle, the ultimate energy source of all life. Folic acid is often used to supplement folate, but it needs to be processed first in the liver to become folate, often incompletely, and is linked to an increase in prostate cancer.

I am not a doctor and could be wrong but I don't think so. My homocystein is in the normal range (albeit the top end) and my PCP is perplexed. She expected much higher and like most doctors believes my BP is a result of the corticosteroid, it may be but the benifits (I function pain free) far outweighs the presumed negative.  I take 5 mg prednisolone (used to take 5 mg prednisone, same difference) a day to control pain (fibromyalgia?), and alka selzer (aspirin also reduces homocystein) for breakthrough pain. 

As I mentioned before, my black lab was on prednisone for his entire life, in good health with no sign of arthritis. He died of degernerative myelitis at 9 1/2 years.

BP meds did not affect my blood pressure but did cause dry eyes (amlodipine) and an inguinal hernia (persistant cough from lisinopril) and excessive urination so were discontinued (actually my doctor told me to find another PCP)

Sorry for the rant.

 

 

 

If I have understood you correctly, elevated homocysteine levels increase one's risk of cardiovascular disease, and aspirin decreases one's homocysteine levels -  ergo diminishes one's risk of cardio- vascular disease. So, if I have high BP aspirin should diminish one's risk. Have I understood the logic correctly?

As I have a bad reaction to every single BP med I have tried over the last 25 years I have ceased taking any of them and am looking at the following alternative treatments.

upping my fluid intake

lowering my salt intake

trying to decrease my weight (which has spiralled on immunosuppressant drugs)

taking 75mg of aspirin daily

drinking blueberry juice

meditation

Got any other suggestions?

 

[Jackie Garrett]

2 hours ago, Liz Barnard said:

If I have understood you correctly, elevated homocysteine levels increase one's risk of cardiovascular disease, and aspirin decreases one's homocysteine levels -  ergo diminishes one's risk of cardio- vascular disease. So, if I have high BP aspirin should diminish one's risk. Have I understood the logic correctly?

As I have a bad reaction to every single BP med I have tried over the last 25 years I have ceased taking any of them and am looking at the following alternative treatments.

upping my fluid intake

lowering my salt intake

trying to decrease my weight (which has spiralled on immunosuppressant drugs)

taking 75mg of aspirin daily

drinking blueberry juice

meditation

Got any other suggestions?

 

Hello Liz

I became so hungry on my meds I just wanted to eat all the time it was truly horrible,  I gained weight very quickly, I came off them, as it was only  precautionary that I was on them,   and the hunger subsided thank goodness, I wouldn’t recommend anyone to come off meds though , i didn’t know I was Lactose intolerant at that time and the tablets I was on all contained Lactose,  it also left me with a lot of inflammation and pain, maybe if you asked for a Lactose free Medication it may suit you more.

[Liz Barnard]

20 hours ago, Posterboy said:

 

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,

 

Thank you so much - I hadn't heard of this.  Can it be bought independently of the other B vitamins?

[Scott Adams]

@Liz Barnard, be sure to always take the aspirin with food as it can cause stomach/intestinal bleeding and stomach upset in some people. I believe taking it with food reduces the risks such issues. 

Also, due to my family history, my doctor told me to take fish oil capsules daily, so I use the Kirkland brand from Costco. This is in addition to a low dose statin and blood pressure meds, which not everyone may want to take, but given my family history I'm going to follow my doctor's advice on this.

[Wheatwacked]

1 hour ago, Liz Barnard said:

bad reaction to every single BP med

Me, too. Homocysteine is considered an independant risk factor for heart disease and stroke. Flolate and vitamin B5 are the primary molecules to metabolize it but all the B vitamins have a role. Prednisone and aspirin help somewhat. Regardless of other risk factors high homocystein is bad because it damages your arteries.

The WHO says increasing Potassium intake helps BP . The Dash diet is designed to increase potassium and decrease sodium. The key is to injest twice as much potassium as sodium. The WHO and UK recommend >3000 mg potassium,  US RDA in 2021 requires all food nutrition labels to include Potassium and use 4700 grams as 100% RDA. Most of what you find on the internet is outdated even the NIH Fact Sheet. Grab a can of food and do the math. The US increased its recommended intake from 4500 mg to 4700 mg a day. "In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women."   https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

Orange juice, milk, coffee, beans, oatmeal. Even Wise potato chips have a 2:1 K/NA ratio. Watermelon has lots of K and no sodium and is cheap. I eat about a pound a day now. One pound of watermelor has 136 calories, 508 mg potassium and 5 mg sodium. It has about 15 ounces of water.

2 hours ago, Liz Barnard said:

So, if I have high BP aspirin should diminish one's risk.

 

54 minutes ago, Liz Barnard said:

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

EC is enteric coated aspirin. It resisted the HCL stomach acid and is absorbed in the intestine instead. Available over the counter.

That seems to be the reason they started prescribing low dose aspirin and recommend aspirin while waiting for the ambulance for a heart attack. It acts as an anticoagulent.  I believe they don't recommend it for stroke because you don't know if it's a bleed or a clot.

Since increasing my Potassium to 5000 mg a day in 2020 my systolic blood pressure which was always >140 now usually ranges between 100 and 140. I expect it will take a while to repair the damage and stabilize. 

[trents]

Yes, but the original question was not whether or not aspirin lowered inflammation (it does) or even does it lower the risk for heart attacks and strokes. But does it lower blood pressure? That was the issue.

[Wheatwacked]

Quote

 

In people with pre-hypertension or mild, untreated hypertension, aspirin given before bedtime (instead of upon awakening) may reduce blood pressure...NSAIDs can actually raise blood pressure in people with hypertension.   Aspirin Therapy and High Blood Pressure (verywellhealth.com)   https://www.verywellhealth.com/aspirin-benefits-risks-and-recommendations-1764110

 

It's effect on BP is entirely dependent on the individual. It's use is more like a mild warfarin to stop clotting. 

[Kathryn T]

On 6/16/2021 at 5:02 PM, J Morgan said:

Hi friends,

This is my first post here! I was diagnosed with celiac via blood work and endoscopy in 2014 and have been on a strict gluten-free diet since then. So strict that when I was accidentally glutened once last year I was so sick I thought I was going to die. I got very familiar with bathroom floor that day with that gluten getting out of my body every way humanly (and at times it felt like inhumanly) possible. 
 

Felt pretty great for years since going gluten-free. In the past 18 months I had COVID, then lots of bronchitis, then pneumonia, then pericarditis. I am still on meds for pericarditis (steroids and something called colchicine). I also developed a weird fatty lump on my ribs. 
 

About 2 weeks ago I started to have INTENSELY bad stomach problems. Explosive diarrhea, super impressive gas and burping and bloating and stomach pain. I am spending about 25% of my work day in the bathroom now. 
 

I also noticed an increase in muscle twitches and cramps on my left side, now my left leg is going numb at random times. In the past two weeks I have fallen up the stairs, in the yard and in my living room. I have lots of beautiful bruises as a result. 
 

For the past two weeks I have only had Kate Farms’s nutritional shakes, blueberries, bananas, Chex cereal, rice and fish. Today I only ate the Kate Farms shake b/c I just can’t imagine eating anything. 
 

I had an endoscopy a week ago and it showed increased lymphocyit….whatever that word is and blunted villi. My endoscopy last year did not show blunted villi. 
 

My TTG test is normal. It was 145 when I was first diagnosed. My blood work shows low protein and low white blood cells. 
 

I don’t drink or smoke. My cholesterol is great. 
 

I have an appt with my doc but, frankly, he is not a celiac specialist and I would like to hear what you wonderful people who live this world with me think. 
 

Could it be refractory celiac? I’m terrified that it may be that. I am only in my early 40s and have 4 kids-all 13 and under. 
 

Any thoughts you have about what is going on or where to go next would be appreciated. 
 

 

So, I’m reading this in Feb 2022… did you find out what was/is going on? I have a story much like this that started after 6 years of gluten-free….

On 6/16/2021 at 5:02 PM, J Morgan said:

Hi friends,

This is my first post here! I was diagnosed with celiac via blood work and endoscopy in 2014 and have been on a strict gluten-free diet since then. So strict that when I was accidentally glutened once last year I was so sick I thought I was going to die. I got very familiar with bathroom floor that day with that gluten getting out of my body every way humanly (and at times it felt like inhumanly) possible. 
 

Felt pretty great for years since going gluten-free. In the past 18 months I had COVID, then lots of bronchitis, then pneumonia, then pericarditis. I am still on meds for pericarditis (steroids and something called colchicine). I also developed a weird fatty lump on my ribs. 
 

About 2 weeks ago I started to have INTENSELY bad stomach problems. Explosive diarrhea, super impressive gas and burping and bloating and stomach pain. I am spending about 25% of my work day in the bathroom now. 
 

I also noticed an increase in muscle twitches and cramps on my left side, now my left leg is going numb at random times. In the past two weeks I have fallen up the stairs, in the yard and in my living room. I have lots of beautiful bruises as a result. 
 

For the past two weeks I have only had Kate Farms’s nutritional shakes, blueberries, bananas, Chex cereal, rice and fish. Today I only ate the Kate Farms shake b/c I just can’t imagine eating anything. 
 

I had an endoscopy a week ago and it showed increased lymphocyit….whatever that word is and blunted villi. My endoscopy last year did not show blunted villi. 
 

My TTG test is normal. It was 145 when I was first diagnosed. My blood work shows low protein and low white blood cells. 
 

I don’t drink or smoke. My cholesterol is great. 
 

I have an appt with my doc but, frankly, he is not a celiac specialist and I would like to hear what you wonderful people who live this world with me think. 
 

Could it be refractory celiac? I’m terrified that it may be that. I am only in my early 40s and have 4 kids-all 13 and under. 
 

Any thoughts you have about what is going on or where to go next would be appreciated. 
 

 

So, I’m reading this in Feb 2022… did you find out what was/is going on? I have a story much like this that started after 6 years of gluten-free….