Refractory Celiac?

[J Morgan]

15 hours ago, Oldturdle said:

What a hideous ordeal you have been through!  As a retired RN, C-difficile comes to mind.  This is severe persistent diarrhea that is only treated by antibiotics.  A stool culture is needed for diagnosis. The prednisone can lower your immune response, and make you more susceptible to infections.  C-diff diarrhea is often very explosive and watery, with a green tinge.  The possitive Babinsky is usually associated with the central nervous system, and I would not be surprised if this is a latent covid thing.   I am so hoping you have a positive out come.  Keep us posted.

 

Thank you for your response. I went to the nuerologist yesterday and she said that she thinks I have a CNS disorder (not likely ALS due to EMG and other tests) or a brain tumor. I'm not really sure which diagnosis to hope for? I think CNS disorders tend to be lifelong, but a brain tumor (if it were benign) could be taken out and I could have zero additional problems. I'm not thrilled with the options. Anyhow I don't have my MRI until July 8....not quite sure how to manage my anxiety during this wait time, particularly as the nuero stuff is getting worse. The GI stuff is better though...or I am just really not that eating much so there isn't a lot of chance for terrible poops!

[GFinDC]

5 hours ago, Jackie Garrett said:

Thankyou for your comment, yes I do believe I have leaky gut, I find that coming off Dairy for me is helping me with my symptoms improving so much, sometimes I weaken and have something that I fancy with Dairy in and I soon know with my reactions to it. 

If you are talking about ice cream, there are non-dairy subs out there now.  So Delicious makes coconut ice cream subs and Halo top makes some also.  They both also make regular dairy ice cream too so check labels.

Are all your vitamin and mineral levels good?  They should be checked since you are having GI /nerve symptoms. 

Edited June 22, 2021 by GFinDC

[Jackie Garrett]

1 hour ago, J Morgan said:

It really is! I have taken lactose out of my diet and feel a bit better GI wise.

I have heard that leaky gut is something to consider and have taken out dairy and lactose...which is making my GI symptoms a bit better I think.

I’m glad your feeling a bit better, it may take a good few months or more for everything to recover. I’m hoping one day I may be able to return to a small amount of Dairy fingers crossed.

[Jackie Garrett]

49 minutes ago, GFinDC said:

If you are talking about ice cream, there are non-dairy subs out there now.  So Delicious makes coconut ice cream subs and Halo top makes some also.  They both also make regular dairy ice cream too so check labels.

Are all your vitamin and mineral levels good?  They should be checked since you are having GI /nerve symptoms. 

I have just bought my first Dairy free ice cream, it was actually very nice. I have had my blood and all seems ok, the previous blood test said I had high alkaline phosphatase whatever that means, so they retested a month later and the next one was fine apparently. Thank you for your comments.

[trents]

Alkaline Phosphatase is an enzyme that helps break down proteins and is one measure of liver and gallbladder function as well as bone health.

[Wheatwacked]

Two things to consider/discuss with your doctors:

Choline is absorbed in the small intestine. This makes it a prime candidate as an unrecognized vitamin deficiency in Celiac Disease. Choline is used for synthesis of phosphatidyl-choline, a key lipid in cellular membranes; acetyl-choline, a neurotransmitter; and betaine, a methyl donor. Choline deficiency in rodents results in exacerbated inflammatory responses to immune challenges. Three conditions in which choline might play a role: cardiovascular and peripheral artery disease, neurological disorders, and fatty liver disease. Choline is involved in functions that overlap with those of folate and other B vitamins. Many studies do not assess the status of all B vitamins, which can confound results and obscure the true relationship between choline and the observed outcome. The major source of choline in the American diet was eggs.

 Vitamin B5: While it's importance is usually minimized or ignored entirely, vitamin B5, Pantothenic Acid is found in all living cells. Celiac Disease causes B5 deficiency. The most common side effects of a vitamin B5 deficiency include: fatigue, insomnia, depression, irritability, vomiting, stomach pains, burning feet, and upper respiritory infections, headache, exhaustion, irritability, restless sleep, numb or burning hands and feet.

It is the precurser to Co-A, which is essential to the Krebs Cycle, the source of ATP the energy of all life. In eukaryotic cells, the citric acid cycle occurs in the matrix of the mitochondrion. In prokaryotic cells, such as bacteria, which lack mitochondria, the citric acid cycle reaction sequence is performed in the cytosol. 

The FNB was unable to establish ULs for pantothenic acid because there are no reports of pantothenic acid toxicity in humans at high intakes. https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/.

In order to alliviate the pain I started to experience several weeks after stopping prednisone I started taking 1000 mg B5, call it a hunch. After two days I realized it was effective. In order to quickly replenish, I increased to 1000 mg every 4 hours. The effect is incredible. I haven't needed aspirin for the last few days where several weeks ago I needed Tramodol (synthetic opioid) to replace the prednisone. The B5 (along with Phosphatidyl Choline at 840 mg a day) has even reduced the pain from my Rotator Cuff damage, I usually just suffer through it, an unexpected benefit. In a week I'll reduce it to 500 mg a day and see what happens.

I don't know why these two are ignored as a Celiac Disease nutrient of interest (not able to patent the formulation comes to mind) but I am considering this the missing link to my healing.

 

[Jackie Garrett]

4 hours ago, trents said:

Alkaline Phosphatase is an enzyme that helps break down proteins and is one measure of liver and gallbladder function as well as bone health.

Thank you for that answer.

[Jackie Garrett]

3 hours ago, Wheatwacked said:

Two things to consider/discuss with your doctors:

Choline is absorbed in the small intestine. This makes it a prime candidate as an unrecognized vitamin deficiency in Celiac Disease. Choline is used for synthesis of phosphatidyl-choline, a key lipid in cellular membranes; acetyl-choline, a neurotransmitter; and betaine, a methyl donor. Choline deficiency in rodents results in exacerbated inflammatory responses to immune challenges. Three conditions in which choline might play a role: cardiovascular and peripheral artery disease, neurological disorders, and fatty liver disease. Choline is involved in functions that overlap with those of folate and other B vitamins. Many studies do not assess the status of all B vitamins, which can confound results and obscure the true relationship between choline and the observed outcome. The major source of choline in the American diet was eggs.

 Vitamin B5: While it's importance is usually minimized or ignored entirely, vitamin B5, Pantothenic Acid is found in all living cells. Celiac Disease causes B5 deficiency. The most common side effects of a vitamin B5 deficiency include: fatigue, insomnia, depression, irritability, vomiting, stomach pains, burning feet, and upper respiritory infections, headache, exhaustion, irritability, restless sleep, numb or burning hands and feet.

It is the precurser to Co-A, which is essential to the Krebs Cycle, the source of ATP the energy of all life. In eukaryotic cells, the citric acid cycle occurs in the matrix of the mitochondrion. In prokaryotic cells, such as bacteria, which lack mitochondria, the citric acid cycle reaction sequence is performed in the cytosol. 

The FNB was unable to establish ULs for pantothenic acid because there are no reports of pantothenic acid toxicity in humans at high intakes. https://ods.od.nih.gov/factsheets/PantothenicAcid-HealthProfessional/.

In order to alliviate the pain I started to experience several weeks after stopping prednisone I started taking 1000 mg B5, call it a hunch. After two days I realized it was effective. In order to quickly replenish, I increased to 1000 mg every 4 hours. The effect is incredible. I haven't needed aspirin for the last few days where several weeks ago I needed Tramodol (synthetic opioid) to replace the prednisone. The B5 (along with Phosphatidyl Choline at 840 mg a day) has even reduced the pain from my Rotator Cuff damage, I usually just suffer through it, an unexpected benefit. In a week I'll reduce it to 500 mg a day and see what happens.

I don't know why these two are ignored as a Celiac Disease nutrient of interest (not able to patent the formulation comes to mind) but I am considering this the missing link to my healing.

 

Very interesting, I have had a Scad heart attack at 50 also fatty liver, inflammation ( the inflammation started after I had been on the medication so I came off all meds) I also had rotary cuff symptoms, Fibromyalgia pain, and other symptoms, maybe I should try some vitamin B5, I eat really well, I just can’t have milk anymore as it makes my symptoms worse. Thankyou for your comment.

[DyingFromCeliac]

18 hours ago, Jackie Garrett said:

Thankyou for your comment, yes I do believe I have leaky gut, I find that coming off Dairy for me is helping me with my symptoms improving so much, sometimes I weaken and have something that I fancy with Dairy in and I soon know with my reactions to it. 

Arguably it also could be something you are touching, inhaling, or using topically. 

[Wheatwacked]

8 hours ago, Jackie Garrett said:

fatty liver

For fatty liver you want to make sure you get minimum daily 600 to 3500 mg choline.  The RDA for B5, Panothenic Acid is 5 mg with no upper limit. When there is insufficient Folate our bodies use B5 to lower homocysteine levels, an important indictator of cardiac risk. So like the other water soluable B vitamins I think it better to err on the high side because I know I have trouble getting enough folate. I will not take Folic Acid because of increased risk of Prostate Cancer. For some reason the B complex I take has none. I found that with vitamin D, RDA 600 iu, I require 10,000 iu to avoid drifting into SAD Seasonal Affective Disorder, so I have a personal precidence where the minimum of some vitamins is wrong for me. 10,000 iu since 2015.

"Choline is a source of methyl groups needed for many steps in metabolism. The body needs choline to synthesize phosphatidylcholine and sphingomyelin, two major phospholipids vital for cell membranes. Therefore, all plant and animal cells need choline to preserve their structural integrity [1,2]. In addition, choline is needed to produce acetylcholine, an important neurotransmitter for memory, mood, muscle control, and other brain and nervous system functions [1-3]. Choline also plays important roles in modulating gene expression, cell membrane signaling, lipid transport and metabolism, and early brain development [1,2].

Humans can produce choline endogenously in the liver, mostly as phosphatidylcholine, but the amount that the body naturally synthesizes is not sufficient to meet human needs"  https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

For dairy, concerning lactose intolerance,I eat homemade dill pickles because most of the lactase we need is made by your gut bacteria and fermented pickles (no vinegar) ia a great source of lactobacillus.  "It is apparent that lauric (12:0), myristic (14:0) and palmitic (16:0) have adverse effects on LDL, which is considered an important risk factor for CVD [60]. When compared to carbohydrate consumption in humans, lauric acid, myristic acid and palmitic acid raised total cholesterol and LDL, whereas stearic acid does not."  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867544/

In order to increase milk quantity and milk fat by about 25%, dairies use a palmitic acid based food supplement. These fatty acids go directly to the mammeries and increase the C:16 fat content and milk volume, but it only is the fat that increases LDL. The C:18 fats are held in check by a feedback mechanism. 100% Pasture Fed dairy. After I switched to only pasture fed my total cholesteral dropped from 320 mg/dl to 282. No statins. Also if I drink regular milk at bedtime I will get a burning in my gut, whereas with the 100% pasture fed at bedtime I do not. Coincidence?

"Saturated fatty acids in general, and palmitic acid (C16:0) in particular, are harmful in part because they elevate LDL cholesterol and atherosclerosis risk7. Dietary stearic acid (C18:0), however, does not increase atherosclerosis risk, and, if anything, actually reduces LDL cholesterol7,8,9,10. Indeed, increased levels of circulating C18:0 lipids are associated with reduced blood pressure, improved heart function, and reduced cancer risk11,12,13,14,15. Hence unlike other saturated fatty acids, and contrary to the general belief that saturated fatty acids are harmful, C18:0 appears to have some beneficial effects on human health. The molecular mechanisms of this, however, are not clear. https://www.nature.com/articles/s41467-018-05614-6.  Whole Milk for me is an important source of potassium, calcium, phosphorus, zinc, selenium, choline, folate and vitamin A. Ireland and New Zealand are the only countries that don't use Palmitic Acid. It is less profitable for them than all pasture fed.

 

[Prissymt]

I came down with covid 19 in mid-April and have had awful gastrointestinal issues since.  I have been on a strict gluten free diet for 25 years. After an upper GI and Colonoscopy my Gastroenterologist has said he feels that rather than a gluten issue it may very well be an after effect of Covid, something he and his colleagues are seeing in increasing numbers - and with a host of differing symptoms - and they are sharing information to try to find a solution. I am fortunate to be in an area of the US that is heavy with teaching hospitals and advanced medical facilities. Right now I am on a type of "drug cocktail" they have found may be a gut reset of sorts but it's too early for me to have experienced relief. Just something for you and your doctor's to consider in your quest for answers.  

[Jackie Garrett]

53 minutes ago, Prissymt said:

I came down with covid 19 in mid-April and have had awful gastrointestinal issues since.  I have been on a strict gluten free diet for 25 years. After an upper GI and Colonoscopy my Gastroenterologist has said he feels that rather than a gluten issue it may very well be an after effect of Covid, something he and his colleagues are seeing in increasing numbers - and with a host of differing symptoms - and they are sharing information to try to find a solution. I am fortunate to be in an area of the US that is heavy with teaching hospitals and advanced medical facilities. Right now I am on a type of "drug cocktail" they have found may be a gut reset of sorts but it's too early for me to have experienced relief. Just something for you and your doctor's to consider in your quest for answers.  

Thankyou for your comments, i am eating healthier hoping to reset if I can my gut bacteria.

[Wheatwacked]

15 hours ago, Wheatwacked said:

Choline deficiency in rodents results in exacerbated inflammatory responses to immune challenges.

Are you eating enough choline? Great that you have excellent medical care, but doctors tend to forget the nutrition basics. "Although most people in the United States consume less than the AI of choline, frank choline deficiency in healthy, nonpregnant individuals is very rare. https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/.

You are not healthy, so it may or may not be an issue, but certainly worth an answer.

[Oldturdle]

23 hours ago, J Morgan said:

Thank you for your response. I went to the nuerologist yesterday and she said that she thinks I have a CNS disorder (not likely ALS due to EMG and other tests) or a brain tumor. I'm not really sure which diagnosis to hope for? I think CNS disorders tend to be lifelong, but a brain tumor (if it were benign) could be taken out and I could have zero additional problems. I'm not thrilled with the options. Anyhow I don't have my MRI until July 8....not quite sure how to manage my anxiety during this wait time, particularly as the nuero stuff is getting worse. The GI stuff is better though...or I am just really not that eating much so there isn't a lot of chance for terrible poops!

First, congratulations on the poop!  Just think of that as a possitve thing.  Your young body is very capable of healing.  The CNS is disturbing.  However, there is not much you can do until you have some answers.  In the mean time, the very best thing you can do is to take care of yourself.  Get your body as strong as possible to allow optimum response to whatever treatment you may have to go through.  I realize this is challenging, given your digestive issues.  Also. I know the anxiety is hideous to live with, but it may help to know that studies show that moderate anxiety is helpful before medical procedures.  It elevates your stress hormones, which allows for a faster better response to anything invasive.  I know nothing we can say will really help, but just remember, most outcomes are not nearly as bad as we imagine they will be.  I will send healing thoughts.

[Blue-Sky]

Zinc, Magnesium and Selenium can also be easily depleted if someone has IBS, drinks alcohol, has inflammation stress or a really long list of other conditions. Zinc boosts tight junction proteins in the intestine and helps maintain the blood brain barrier. Zinc supplementation can be helpful for ocd. Zinc supplementation decreases relapses in crohn's disease. Zinc deficiency is the number one most common deficiency when celiac disease is first diagnosed. 

If you click on my username or search for zinc in the search field, I did a blog post on the issue. 

[J Morgan]

17 hours ago, Prissymt said:

I came down with covid 19 in mid-April and have had awful gastrointestinal issues since.  I have been on a strict gluten free diet for 25 years. After an upper GI and Colonoscopy my Gastroenterologist has said he feels that rather than a gluten issue it may very well be an after effect of Covid, something he and his colleagues are seeing in increasing numbers - and with a host of differing symptoms - and they are sharing information to try to find a solution. I am fortunate to be in an area of the US that is heavy with teaching hospitals and advanced medical facilities. Right now I am on a type of "drug cocktail" they have found may be a gut reset of sorts but it's too early for me to have experienced relief. Just something for you and your doctor's to consider in your quest for answers.  

This is fascinating! I have an appt with my gastro on Tues and will ask him about this. 

[ReneeMad]

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. 
 

 

Hi, 

The only thing I can comment on is your numbness, after 8 months of tests, a lumbar puncture (MS) and medical massages I was low on B12 and was having muscle pain, whole body numbness and blurred vision, tired and weak.  These last 2 weeks I have felt 95% better and fortunately caught this before any long term damage.

Good Luck!

[J Morgan]

7 hours ago, ReneeMad said:

Hi, 

The only thing I can comment on is your numbness, after 8 months of tests, a lumbar puncture (MS) and medical massages I was low on B12 and was having muscle pain, whole body numbness and blurred vision, tired and weak.  These last 2 weeks I have felt 95% better and fortunately caught this before any long term damage.

Good Luck!

Thank you! I had my vitamin B checked and my doc said it was fine but I’m not sure *which* B it was. I’m going to ask her to check those levels again. 

[knitty kitty]

@J Morgan,

Give another thought to that "nutritional" shake.  It's made with agave.  Agave has LOTS of fructose.  Lots of fructose can cause symptoms you've described.  Read this.. .

https://theceliacmd.com/what-is-fructose-malabsorption-is-it-the-same-as-fructose-intolerance/

And....

https://www.healthline.com/nutrition/agave-nectar-is-even-worse-than-sugar#bottom-line

 

Peripheral neuropathy can be caused by vitamin and mineral deficiencies.  Read this study...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4575440/

 

Thiamine, aka Vitamin B1, is being used by doctors to treat the lingering effects of Covid.

Read these...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/

And...

https://www.researchsquare.com/article/rs-400565/v1

And...

https://www.frontiersin.org/articles/10.3389/fneur.2021.629273/full

And...

https://www.sciencedirect.com/science/article/pii/S2666354621000557

Hope this helps.

 

[Earlene Xavier]

On 6/16/2021 at 5:25 PM, trents said:

Welocome to the forum, J Morgan!

Have you investigated your medications to determine if any of them contain gluten? Wheat starch is sometimes used as a filler in pills. You likely would have to contact the manufacturer to get an answer. Also, what about the Chex cereal? Many cereals use malt flavoring even though the main ingredient may be corn or rice. And we have had a number of posts in the past few months from people who get ill when eating breakfast cereals labeled gluten free. We are starting to advise people to look for "Certified Gluten Free" rather than just "Gluten Free." Certified Gluten Free products are subjected to stricter and more consistent testing standards.

I got violently ill eating certified gluten free oats. I stopped eating all grains and eventually my health journey led me to a low carb/carnivore diet. My labs are perfect and feel great!

[trents]

Earline, what do you do for fiber in your diet? Is constipation an issue?

[Wheatwacked]

1 hour ago, trents said:

Is constipation an issue?

"That’s because meat and animal fat are completely digestible. They don’t leave much residue behind, so they simply can’t be a direct cause of constipation." https://www.doctorkiltz.com/carnivore-diet-constipation/

Thanks, good question. In the effort to lower my cholesterol I recently added oatmeal to my diet (hypothesis: fiber flushes bile, causing cholesterol to be used to create new bile) which doubled my daily fiber to above 20 g/day. I hadn't realized it until you mentioned it, and it is not an issue, but I have been somewhat less regular since then. God, our biology is complicated!

[trents]

Well you know, the other side of that question is "what is constipation." For some people, not having a good poop every day means they're constipated. Other people get along just fine without needing to have a BM every day. If you get less fiber in your diet it stands to reason that you aren't going to poop as much but is that necessarily bad? We've been brain washed about fiber and the need to drink tons of water daily like we were with the food pyramid years ago that had carbs and grains at the top.

[Earlene Xavier]

I don't worry about fiber at all. When I removed lectins/grains, the worst of which is gluten, and also 'healthy' greens, ie spinach which is very high in oxalates, my gut issues disappeared within about 24-36 hrs., it was amazing! Prior to that I had to make sure I always knew where the nearest bathroom was, it was horrible. A primarily meat based diet, and I also eat a lot of eggs, is absorbed mainly in the small intestine, so I have a very small soft bm every day or so. All that indigestible fiber is the cause rather than the cure for constipation. An added benefit is that a low carb/carnivore diet is very satiating and provides all the nutrients you need in a very bioavailable form. I eat two meals a day and am the slimmest I have been since I was a teenager!

I recommend you check out Paul Mason MD, a sports medicine physician in Sydney, on YouTube and his lecture on fiber, also Zoe Harcombe Phd, also discussing fiber, both very informative. You may also want to check to MeatRx and read some of the many stories of people who have made amazing recoveries from all kinds of health issues. Good luck!

 

[J Morgan]

Hello Celiac friends, just wanted to give a quick update. The Neuro issues are continuing and I am now not working (I sell words and thoughts for a living so as I can't think straight its probably not good to work). I actually went to the ED last week because I was super confused, they found I was dehydrated and my calcium was a little low, but were unsure why I was so out of it. Stayed over night and then went home with follow up to neuro scheduled tomorrow.

The rest of my blood work was ok, but it looks like my protein was low in April (not tested now) and my platelets have gone from always being in the 230-250 range to 170. I don't know if that matters though, no one seemed concerned about it at the hospital.

I also have gone from ALL the poop to zero of the poop and have tons of pain whenever I try to eat solid food. I tried colace twice a day for 3 days and have been on Mirilax for 2 days and NOTHIN is happening. So frickin annoying. I'm living on the liquids for the past 3 days as well hoping that would help.

I have 5 days of testing at the Mayo Clinic coming up in a 3 weeks but just realized that it is out of network and am now debating my ability to pay for it especially when not working. Anyone have any advice on how to get your insurance pay for out of network at the in-network rate?

M