Refractory Celiac?

[RMJ]

I’m glad that the Mayo clinic is in your network!  One less thing to worry about. I hope they can give you some answers. Did you get the MRI to look at your brain?

I just reread this whole thread.  You have serious health issues and I worry about your getting a lot of advice here from people who are very caring but not medical professionals.  I’m not either, although I have a BS in Nutrition Science and PhD in Pharmacology.  

I’m glad you’re seeing a dietician - hopefully a registered dietician? I looked at Essential Care Junior and it looks quite complete with nutrients in a form that are as easily absorbed as possible in your condition. It seems like she is just trying to get calories and nutrients into you - which is good!  Tapioca starch syrup contains glucose which is the most important nutrient when someone is close to starvation, because it is what the brain uses for energy.  At this point, getting those nutrients in any form you can keep down is probably more important than whether they come from plants, animals, combined with fiber, etc.

When taking large amounts of vitamins, especially just one vitamin, in amounts not possible from food, they’re basically being used as a drug. Sometimes this is needed but I’d check with your dietician before trying any such supplementation.

 

[J Morgan]

11 minutes ago, RMJ said:

I’m glad that the Mayo clinic is in your network!  One less thing to worry about. I hope they can give you some answers. Did you get the MRI to look at your brain?

I just reread this whole thread.  You have serious health issues and I worry about your getting a lot of advice here from people who are very caring but not medical professionals.  I’m not either, although I have a BS in Nutrition Science and PhD in Pharmacology.  

I’m glad you’re seeing a dietician - hopefully a registered dietician? I looked at Essential Care Junior and it looks quite complete with nutrients in a form that are as easily absorbed as possible in your condition. It seems like she is just trying to get calories and nutrients into you - which is good!  Tapioca starch syrup contains glucose which is the most important nutrient when someone is close to starvation, because it is what the brain uses for energy.  At this point, getting those nutrients in any form you can keep down is probably more important than whether they come from plants, animals, combined with fiber, etc.

When taking large amounts of vitamins, especially just one vitamin, in amounts not possible from food, they’re basically being used as a drug. Sometimes this is needed but I’d check with your dietician before trying any such supplementation.

 

Hi, it sounds like you are actually pretty qualified to give your thoughts about this (!!) but I do have lots of doctors who are trying to help figure it out as well. Unfortunately there are ZERO doctors in my area that are Celiac specialists; well, there is one guy but he isn't taking new patients. My current GI is really not great. He told me that I couldn't possibly have refractory celiac b/c my Ttg is normal-which a (very) quick search of medical literature proves to be untrue. The Essential Care Jr. Stuff seems to be the only thing I can drink (except water) that doesn't kill my stomach (or end up leaving my body urgently) so I am going to keep that up until they can figure it out. I'm weirdly super glad I lost my appetite, being hungry all the time would make this sooooo much worse.

My dietician's day job is with the large hospital in my area working as a dietician for children with severe food allergies. She is a registered dietician and seems to be quite interested in making sure that I am getting what I need nutrition wise-I think she is the only reason I am not severely malnourished ATM.

 

[J Morgan]

Oh and I did get the MRI done yesterday evening but no results yet.

[Wheatwacked]

It's seems you did well on GFD until the COVID hit you, so this is way more complex than cross contamination. I hope Mayo can find the answers for you. Meantime it is imperative that you keep up your nutrition.

 

5 hours ago, J Morgan said:

She has given me Essential Care Jr.

How many grams of powder a day? I can calculate it so you at least know what you are getting and what you are not. My infant son was prescribed Nutramagen (before it was bought by Infamil) for six months when he was diagnosed celiac back in 1976 and this seems the same.  He did well. The person that prescribed it for you is a keeper.

6 hours ago, Melissa93 said:

you can't deny that animal products bring more bad nutrional elements

It isn't actually the animals, but what we do to make them profitable. Dairies add C:16 fatty acids to the diet to increase milk volume and milk fat by 25%. The C:16 is ignored by the cows feedback systems (and ours) so it all goes directly to the mammeries. C:18 fatty acids are regulated by the cow so every molecule supplemented reduces de novo production in the mameries to keep the the correct balance of fats for the calf's nutrition. Most of the milk we drink, except 100% pasture fed (think Ireland and New Zealand) have more milk fat and more milk, and so more profitalbe but in our bodies it forms LDL cholesterals. People drank milk for thousands of years. When I switched to 100% Pasture last January is when my total cholesteral started to go down. Also tastes so much better and no burning stomach. Lactose intolerance is more an issue of gut biome. Humans only make a little lactase. Most of what we need to drink milk is a product of the lactobacillus living in our healthy guts. Bad gut = lactose intolerance. Naturally fermented foods.

HiFructose is another. In the seventies an industrialist bought the rights to produce bio-fuel from a Japanese company. He used it to produce High Fructose corn syrup. Coincidentally, Sugar became Public Enemy #1. Originally Coca Cola was made with sugar. Today's Original Coke is made with HiFructose. Fructose, unlike glucose has no feedback mechanism. So it floats in our blood as sugars until finally broken down to glucose, but nothing like insulin to clear it. HiFructose corn syrup is insulin resistant, a new catch word for the pharmaceuticals.

Fuhrman's book EAT TO LIVE published in 2003 was my eye opener. He called our growing health problems MAD (Modern American Diet). I believe he started as a cardiologist, now refers to himself as a Nutritarian. Raw vegetables take longer to digest so slows peristolsis giving your gut time to absorb nutrients and to heal. 10% animal products eaten mostly like condiments to the salad, vegies and fruits.

 

[Wheatwacked]

[Wheatwacked]

Error in calculating Pantothenic Acid (vitamin B5). The lable was in micrograms and I used grams. The corrected is 7.619 grams B5 for 152% RDA.

[Wheatwacked]

Here is Nutramigen. At around the same price it has better potassium (virtually none in Essential Care) to sodium ratio 2.3:1 and 139% calcium vs 10%. Seems more heart healthy. They all use different quantities on the labels making comparison difficult, so your nutritionist may not be aware or have other reasons. Back in 1976 supplies were limited so I often drove hours to buy a case, but my son's doctor insisted it was the best choice if we wanted him to get well. I apologize for any other mistakes like the panthenic acid. As a final note: Corn syrup solids is not the same as High Fructose Corn Syrup.

[J Morgan]

1 hour ago, Wheatwacked said:

Here is Nutramigen. At around the same price it has better potassium (virtually none in Essential Care) to sodium ratio 2.3:1 and 139% calcium vs 10%. Seems more heart healthy. They all use different quantities on the labels making comparison difficult, so your nutritionist may not be aware or have other reasons. Back in 1976 supplies were limited so I often drove hours to buy a case, but my son's doctor insisted it was the best choice if we wanted him to get well. I apologize for any other mistakes like the panthenic acid. As a final note: Corn syrup solids is not the same as High Fructose Corn Syrup.

Thank you so much. I will share this with her. I definitely thought the corn solids were the same as corn syrup. I have more learning to do!! 

[Melissa93]

On 7/9/2021 at 8:14 PM, Wheatwacked said:

It's seems you did well on GFD until the COVID hit you, so this is way more complex than cross contamination. I hope Mayo can find the answers for you. Meantime it is imperative that you keep up your nutrition.

 

How many grams of powder a day? I can calculate it so you at least know what you are getting and what you are not. My infant son was prescribed Nutramagen (before it was bought by Infamil) for six months when he was diagnosed celiac back in 1976 and this seems the same.  He did well. The person that prescribed it for you is a keeper.

It isn't actually the animals, but what we do to make them profitable. Dairies add C:16 fatty acids to the diet to increase milk volume and milk fat by 25%. The C:16 is ignored by the cows feedback systems (and ours) so it all goes directly to the mammeries. C:18 fatty acids are regulated by the cow so every molecule supplemented reduces de novo production in the mameries to keep the the correct balance of fats for the calf's nutrition. Most of the milk we drink, except 100% pasture fed (think Ireland and New Zealand) have more milk fat and more milk, and so more profitalbe but in our bodies it forms LDL cholesterals. People drank milk for thousands of years. When I switched to 100% Pasture last January is when my total cholesteral started to go down. Also tastes so much better and no burning stomach. Lactose intolerance is more an issue of gut biome. Humans only make a little lactase. Most of what we need to drink milk is a product of the lactobacillus living in our healthy guts. Bad gut = lactose intolerance. Naturally fermented foods.

HiFructose is another. In the seventies an industrialist bought the rights to produce bio-fuel from a Japanese company. He used it to produce High Fructose corn syrup. Coincidentally, Sugar became Public Enemy #1. Originally Coca Cola was made with sugar. Today's Original Coke is made with HiFructose. Fructose, unlike glucose has no feedback mechanism. So it floats in our blood as sugars until finally broken down to glucose, but nothing like insulin to clear it. HiFructose corn syrup is insulin resistant, a new catch word for the pharmaceuticals.

Fuhrman's book EAT TO LIVE published in 2003 was my eye opener. He called our growing health problems MAD (Modern American Diet). I believe he started as a cardiologist, now refers to himself as a Nutritarian. Raw vegetables take longer to digest so slows peristolsis giving your gut time to absorb nutrients and to heal. 10% animal products eaten mostly like condiments to the salad, vegies and fruits.

 

Totally agree. Same goes with meat, thousands of years ago occasional meat from a lean gazelle was totally okay in our diet, but the way we’ve been growing animals for our consumption, the processing of the meat and the amount of intake has been proven to increase our risk of varied disease from cancer, diabetes to Alzheimer's. I myself eat 90% whole foods plant based (including nuts, seeds, legumes, beans etc) and 10% low processed food, fish and eggs (pasture raised).

 

The thing with dairy that you didn’t touch upon is hormones though, which even if not added by us, is still available in large amounts that we don’t need. Just like us humans we give the most nutritious components into our own milk for our offspring, including growth hormones and proteins to grow. As adults there has been quite a consensus that we don’t need to drink other mammals milk, as we don’t need those hormones. However we do need quite high amount of calcium and dairy products have always been a really good source of that especially when other foods are low, but in western countries in the last centuries, where the amount of food options is endless, it’s better for your health to get your calcium intake from other sources. In countries in West Africa were people eat about 100grams of fiber a day and supplement their diet with occasional dairy or meat, it’s not a problem at all obviously. 

[Posterboy]

On 7/9/2021 at 7:14 PM, Wheatwacked said:

It's seems you did well on GFD until the COVID hit you, so this is way more complex than cross contamination. I hope Mayo can find the answers for you. Meantime it is imperative that you keep up your nutrition.

 

How many grams of powder a day? I can calculate it so you at least know what you are getting and what you are not. My infant son was prescribed Nutramagen (before it was bought by Infamil) for six months when he was diagnosed celiac back in 1976 and this seems the same.  He did well. The person that prescribed it for you is a keeper.

It isn't actually the animals, but what we do to make them profitable. Dairies add C:16 fatty acids to the diet to increase milk volume and milk fat by 25%. The C:16 is ignored by the cows feedback systems (and ours) so it all goes directly to the mammeries. C:18 fatty acids are regulated by the cow so every molecule supplemented reduces de novo production in the mameries to keep the the correct balance of fats for the calf's nutrition. Most of the milk we drink, except 100% pasture fed (think Ireland and New Zealand) have more milk fat and more milk, and so more profitalbe but in our bodies it forms LDL cholesterals. People drank milk for thousands of years. When I switched to 100% Pasture last January is when my total cholesteral started to go down. Also tastes so much better and no burning stomach. Lactose intolerance is more an issue of gut biome. Humans only make a little lactase. Most of what we need to drink milk is a product of the lactobacillus living in our healthy guts. Bad gut = lactose intolerance. Naturally fermented foods.

HiFructose is another. In the seventies an industrialist bought the rights to produce bio-fuel from a Japanese company. He used it to produce High Fructose corn syrup. Coincidentally, Sugar became Public Enemy #1. Originally Coca Cola was made with sugar. Today's Original Coke is made with HiFructose. Fructose, unlike glucose has no feedback mechanism. So it floats in our blood as sugars until finally broken down to glucose, but nothing like insulin to clear it. HiFructose corn syrup is insulin resistant, a new catch word for the pharmaceuticals.

Fuhrman's book EAT TO LIVE published in 2003 was my eye opener. He called our growing health problems MAD (Modern American Diet). I believe he started as a cardiologist, now refers to himself as a Nutritarian. Raw vegetables take longer to digest so slows peristolsis giving your gut time to absorb nutrients and to heal. 10% animal products eaten mostly like condiments to the salad, vegies and fruits.

 

Wheatwacked Et Al,

Wheatwacked I love the good research you are doing on Milk recently and your research on High Fructose Corn Syrup.

Et Al, here is the more information on how High Fructose Corn Syrup aka HFCS  can act the same as Alcohol in the body and lead to a Non Alcohol fatty liver commonly called NAFL for short...

Entitled "Fructose: It's “Alcohol Without the Buzz”"

https://academic.oup.com/advances/article/4/2/226/4591631

In Short,  High Fructose Corn Syrup aka HFCS will deplete someone of Thiamine the same way drinking alcohol would....especially if your diet is more than 50% CARBS or more...

Quoting from the article and why foods high in HFCS can cause us to be addicted to them....commonly called "Fast Food"...

"We have examined the content of the “fast food” meal as it relates to addiction; of the various components, fat and salt increase the salience of the food, but only sugar and caffeine exhibit true dependence (91). Although anecdotal reports abound supporting human “sugar addiction,” whether this “vicious cycle” of fructose consumption is merely habituation or full-fledged dependence is not yet clear"

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

Posterboy,

[Wheatwacked]

I thought you might find this an interesting statement.  "Hypertension complicated by insulin resistance and hyperinsulinemia can also be observed in normal rats fed a fructose-enriched diet." The Gastrointestinal Tract: an Initial Organ of Metabolic Hypertension? - FullText - Cellular Physiology and Biochemistry 2016, Vol. 38, No. 5 - Karger Publishers

[J Morgan]

Hi everyone,

I thought I would update you on my health journey! The Mayo Clinic was pretty amazing, the GI doc I met with spent about an hour with me and my husband trying to make sure he understood exactly what was going on. (I don't think I have ever spoken with my GI for more than 8 minutes at a time.)

I was poked and prodded endlessly and it turns out that I have small intestine bacterial overgrowth (SIBO) as well as inflammation in my duodenum and jejunum which they say is consistent with SIBO and having had un-diagnosed celiac for most of my life. 

More tests were recommended to make sure they understand why I got SIBO and I am working my way through them, which is not an easy thing to do with our healthcare system stretched thin as it is. I am also pretty sure I am to blame for the SIBO, my diet for pretty much all of 2020 was terrible (no gluten, but lots of unhealthy, sugary things that the SIBO bacteria apparently love). Even though I got scared straight into eating better in early 2021 when I got pneumonia and pericarditis, I think the damage may have been done.

One of the more interesting(?) things they discovered is that my liver is showing some signs of damage that are not explained by the SIBO or the medicines that I am on. My ALT is in the 200s, AST was in the 70s but Alk Phos and other tests were fine. Right now they suspect Wilson's Disease so I am following up with additional tests back home to see if that may be the problem. It seems like a stretch to me because I know of zero family members that experienced this and it is an inherited genetic disease but, I guess it is good to cross it off the list.

The antibiotics for the SIBO seem to be helping-although I am still in some discomfort I am now able to eat fruits and vegetables which is HUGE.

I still have the nuero stuff going on, my platelets are still dropping (but not concerning low; 150sK) and they found myleocytes in my blood smear, which I understand aren't supposed to be there, but all in all I'm hoping that I am finally heading in the right direction!

 

M

[trents]

18% of celiacs experience liver inflammation before going gluten free. That was me 20 years ago. Liver enzymes normalized with a few months of going gluten free.

[RMJ]

Thanks for the update.  I’m glad you’ve gotten some answers and that your new doctor is really willing to try to find out what’s going on.

[J Morgan]

21 minutes ago, trents said:

18% of celiacs experience liver inflammation before going gluten free. That was me 20 years ago. Liver enzymes normalized with a few months of going gluten free.

I’ve been gluten free for 8 years…the liver issue is new. 

[trents]

Then I would assume the liver issue is due to something else. Fatty liver disease? A temporary viral infection?

[Wheatwacked]

3 hours ago, J Morgan said:

Wilson's Disease

Good to hear progress. So your symptoms are leading them to Wilson's Disease, a recessive genetic trait that causes an excess of copper. That means that both of your parents must be carriers of the gene. No family history could mean that up until you, your family has been lucky; or it could mean something else is causing the build up of copper. 

Wilson Disease - Nutritional Disorders - Merck Manuals Professional Edition

An alternate theory. You have Celiac and now SIBO, both are associated with Zinc deficiency. Zinc deficiency is associated with excess copper, they share the same transport. 

Quote

Most people with an overload of copper don't realize it. In conventional medicine, there is only one type of copper toxicity that is recognized, known as Wilson's disease. This is a very serious and rare condition. However, there is a range of copper toxicity cases that aren't Wilson's disease, they range from mild to severe...

Limit copper exposure. Make sure your multivitamin doesn't have copper in it, filter your water, and try to avoid copper cookware. Avoid high copper foods such as soy, yeast, nuts, and mushrooms. 

Increase zinc intake. Consume meats and seafood in addition to plenty of vegetables, and ask your healthcare provider about zinc supplementation. Avoid substances that deplete zinc such as alcohol, sugar, and grains. 

  https://akfunctionalmed.com/blog/copper-and-zinc-balance

Quote

Celiac Disease

Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility.48 A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing.49 All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

 

[J Morgan]

31 minutes ago, Wheatwacked said:

Good to hear progress. So your symptoms are leading them to Wilson's Disease, a recessive genetic trait that causes an excess of copper. That means that both of your parents must be carriers of the gene. No family history could mean that up until you, your family has been lucky; or it could mean something else is causing the build up of copper. 

Wilson Disease - Nutritional Disorders - Merck Manuals Professional Edition

An alternate theory. You have Celiac and now SIBO, both are associated with Zinc deficiency. Zinc deficiency is associated with excess copper, they share the same transport. 

 

This is so helpful. Thank you for sharing!

[Oldturdle]

J. Morgan.  Thank you so much for the update!  I can tell by the tone of your post that you are quite relieved.

[J Morgan]

On 8/10/2021 at 9:10 PM, Wheatwacked said:

Good to hear progress. So your symptoms are leading them to Wilson's Disease, a recessive genetic trait that causes an excess of copper. That means that both of your parents must be carriers of the gene. No family history could mean that up until you, your family has been lucky; or it could mean something else is causing the build up of copper. 

Wilson Disease - Nutritional Disorders - Merck Manuals Professional Edition

An alternate theory. You have Celiac and now SIBO, both are associated with Zinc deficiency. Zinc deficiency is associated with excess copper, they share the same transport. 

 

My zinc is normal so its not a zinc deficiency; most recent tests show that my copper is still going up...another appointment with my Mayo doc today so hopefully I will have more info soon.

On 8/10/2021 at 6:32 PM, trents said:

Then I would assume the liver issue is due to something else. Fatty liver disease? A temporary viral infection?

They are still working on it-ideas are Wilsons Disease and an autoimmune that impacts the liver. I can't remember the name but hopefully I will know more soon.

[fllstuart77]

Your antibody levels would never be at normal if you had that..  antibody levels do not drop with refractory

[fllstuart77]

I also had / still have elevated Liver enzymes which is common with Celiac...  but its definitely from the celiac...  as I've had every test in the book associated with Liver.

My ALT was 166 a few months back..  now it dropped to 78....

my celiac was still active.. but in weak positive range...  so it can still cause issues until it's 100% off... 

 

 

[J Morgan]

5 hours ago, fllstuart77 said:

I also had / still have elevated Liver enzymes which is common with Celiac...  but its definitely from the celiac...  as I've had every test in the book associated with Liver.

My ALT was 166 a few months back..  now it dropped to 78....

my celiac was still active.. but in weak positive range...  so it can still cause issues until it's 100% off... 

 

 

Hi! Thanks for your response. I had some more tests done and I have something called primary biliary cholangities; which is another autoimmune disease and likely caused the SIBO I have been experiencing.   Essentially my immune system has decided that my bile ducts are evil and must be destroyed.  It apparently is associated with Celiac.

[trents]

15 minutes ago, J Morgan said:

Hi! Thanks for your response. I had some more tests done and I have something called primary biliary cholangities; which is another autoimmune disease and likely caused the SIBO I have been experiencing.   Essentially my immune system has decided that my bile ducts are evil and must be destroyed.  It apparently is associated with Celiac.

A number of autoimmune diseases are associated with celiac disease. It is very common for celiacs to develop other autoimmune conditions over time.

[RMJ]

47 minutes ago, J Morgan said:

Hi! Thanks for your response. I had some more tests done and I have something called primary biliary cholangities; which is another autoimmune disease and likely caused the SIBO I have been experiencing.   Essentially my immune system has decided that my bile ducts are evil and must be destroyed.  It apparently is associated with Celiac.

Glad you finally have an answer!