Fat Malabsorption 5 Months After Going gluten-free

[Elwinfrost]

I've been gluten-free for 5 months after being misdiagnosed for 50 years - I had moderate villi damage but am still unable to digest fats. I can't eat peanuts, salmon, avocados, forget (gluten-free) cake and ice cream. I've had a liver bile duct cleared of "sludge" via ERCP but I'm having a terrible time with continued steatorrhea and fat malabsorption. Has anyone else heard of this? I'm so discouraged and am VERY carefully gluten-free - I prepare all my own food using almost all certified gluten-free ingredients. It's quite depressing and concerning. My bloods show iron deficiency and only recently (before the ERCP) slightly elevated ALT - everything else is normal.

[Scott Adams]

Steatorrhea and fat malabsorption are common symptoms of untreated celiac disease. It can take up to a year or more for your villi to recover, and this can only happen if your diet is 100% gluten-free. Do you ever eat outside your home? I ask because this is a common source of contamination. 

Also, is it possible that you have other food intolerance issues, for example cow's milk or oats? These can be common issues with some celiacs.

[knitty kitty]

@Elwinfrost,

Have you been checked for vitamin and mineral deficiencies?  Checking for deficiencies are part of proper follow up care.  Supplementing with vitamins and minerals while you are healing can be beneficial.  Talk to your nuts to give you pointers on eating a nutrient dense diet.

I had gallbladder problems before my Celiac diagnosis.  Unfortunately I had my gallbladder removed in emergency surgery.  Only later did I learn that gallbladder sludge, stones, and malabsorption of fats are symptoms of Thiamine insufficiency/deficiency.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!

[Elwinfrost]

On 12/26/2022 at 6:59 PM, Scott Adams said:

Steatorrhea and fat malabsorption are common symptoms of untreated celiac disease. It can take up to a year or more for your villi to recover, and this can only happen if your diet is 100% gluten-free. Do you ever eat outside your home? I ask because this is a common source of contamination. 

Also, is it possible that you have other food intolerance issues, for example cow's milk or oats? These can be common issues with some celiacs.

Thank you - this is helpful, so hopefully I can look forward to improvement. I stopped eating out at altogether and eat only certified foods, fresh produce and proteins, so I don't think I have cross contamination.

Many thanks.

[Elwinfrost]

On 12/27/2022 at 9:10 AM, knitty kitty said:

@Elwinfrost,

Have you been checked for vitamin and mineral deficiencies?  Checking for deficiencies are part of proper follow up care.  Supplementing with vitamins and minerals while you are healing can be beneficial.  Talk to your nuts to give you pointers on eating a nutrient dense diet.

I had gallbladder problems before my Celiac diagnosis.  Unfortunately I had my gallbladder removed in emergency surgery.  Only later did I learn that gallbladder sludge, stones, and malabsorption of fats are symptoms of Thiamine insufficiency/deficiency.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!

Thank you. I have had all my tests and remain iron deficient. I have also had ERCP for a blocked bile duct from which they removed sludge, which helped a bit but not all the way. I will continue taking supplements to rule that that issue.

Many thanks for all this.

[knitty kitty]

@Elwinfrost,

I took copper supplements  and my iron came up.  

9 Signs and Symptoms of Copper Deficiency

https://www.healthline.com/nutrition/copper-deficiency-symptoms

Maybe you could talk to your doctor about supplementing copper.

[LaLeoLoca]

Hello friend! I am just about to hit six weeks  gluten free. I am improving at a glacial pace and it feels scary and frustrating. I often poo yellow goo or greasy stuff and believe this is sometimes fat. I’ve replaced pots and pans, dog food, even toothpaste and dental floss. Total overhaul.

I’ll share this link that I found this week because it helped me feel better. It basically says celiac recovery can take a long time, and many people on here say progress is totally individual. I read a comment today where someone said they slept two years, just healing. All I want to do is sleep. Two years sounds like what I’ll need.

What was done to our bodies is brutal. I am telling myself that I will heal, but it will take time. It is not easy.

 With the link below, I bet some people take even longer. I literally feel surges in my body where it feels like I am purging and dumping what I thought was gluten, but now I think I must  be dumping antibodies.

I know you were asking about fat, and this isn’t exactly about that. But the encouragement it gave me is that this is a huge process and it can take time, but that healing is happening even if we don’t  notice it. Trees grow slow.

I wish you wellness.

“Research has suggested that the half life of IgA gluten antibodies is about two months and the half life of IgG antibodies is 30-60 days.  Translation: it can take 4 months to clear out the antibodies.  This means that antibody induced damage can go on for a minimum of two months. However, damage may last far longer, depending on other factors, like the overall state of your gut health, other pre-existing health conditions, your nutritional status, and how many gluten exposures you subject yourself to. In addition to the challenges associated with antibodies that present from ingestion of gluten, research has also shown that the mucosal lining of the intestine does not recover well, even when a gluten free diet is implemented. Specifically, the study notes that mucosal recovery was absent in a substantial portion of adults with celiac disease after treatment with a gluten free diet. This underscores even more how important it is to check food labels, confirm how food was prepared if not by you, and do your research on the testing and practices of any company who makes your food.”

From
https://www.glutenfreesociety.org/how-long-does-it-take-for-gluten-to-leave-your-system/

 

 

[knitty kitty]

On 1/10/2023 at 11:23 AM, Elwinfrost said:

Thank you. I have had all my tests and remain iron deficient. I have also had ERCP for a blocked bile duct from which they removed sludge, which helped a bit but not all the way. I will continue taking supplements to rule that that issue.

Many thanks for all this.

I thought you might be I interested in these articles describing patients who were diagnosed with gallbladder problems, had them removed, and we're later found to have thiamine deficiency.  

Yes, thiamine deficiency can affect our gallbladders before our blood levels show a deficiency in Thiamine.  

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

And...

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

And...

Beriberi disease in an 11-year-old girl with total colectomy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6208053/

 

[knitty kitty]

1 hour ago, LaLeoLoca said:

Hello friend! I am just about to hit six weeks  gluten free. I am improving at a glacial pace and it feels scary and frustrating. I often poo yellow goo or greasy stuff and believe this is sometimes fat. I’ve replaced pots and pans, dog food, even toothpaste and dental floss. Total overhaul.

I’ll share this link that I found this week because it helped me feel better. It basically says celiac recovery can take a long time, and many people on here say progress is totally individual. I read a comment today where someone said they slept two years, just healing. All I want to do is sleep. Two years sounds like what I’ll need.

What was done to our bodies is brutal. I am telling myself that I will heal, but it will take time. It is not easy.

 With the link below, I bet some people take even longer. I literally feel surges in my body where it feels like I am purging and dumping what I thought was gluten, but now I think I must  be dumping antibodies.

I know you were asking about fat, and this isn’t exactly about that. But the encouragement it gave me is that this is a huge process and it can take time, but that healing is happening even if we don’t  notice it. Trees grow slow.

I wish you wellness.

“Research has suggested that the half life of IgA gluten antibodies is about two months and the half life of IgG antibodies is 30-60 days.  Translation: it can take 4 months to clear out the antibodies.  This means that antibody induced damage can go on for a minimum of two months. However, damage may last far longer, depending on other factors, like the overall state of your gut health, other pre-existing health conditions, your nutritional status, and how many gluten exposures you subject yourself to. In addition to the challenges associated with antibodies that present from ingestion of gluten, research has also shown that the mucosal lining of the intestine does not recover well, even when a gluten free diet is implemented. Specifically, the study notes that mucosal recovery was absent in a substantial portion of adults with celiac disease after treatment with a gluten free diet. This underscores even more how important it is to check food labels, confirm how food was prepared if not by you, and do your research on the testing and practices of any company who makes your food.”

From
https://www.glutenfreesociety.org/how-long-does-it-take-for-gluten-to-leave-your-system/

 

While the anti-gluten antibodies have about a four month existence, the cells that produce those antibodies live for about two years.  Every exposure promotes not only antibody production, but also more antibody producing cells are made from those first antibody producing cells.  So count two years from a gluten exposure...

Do your best to eat a healthy diet.  Talk to your doctor or nutritionist about supplementing while you are healing and not able to absorb needed vitamins and minerals.

Gluten-Free Diet: Gaps and Needs for a Healthier Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6357014/

 

[Dtoc]

On 1/20/2023 at 3:48 PM, LaLeoLoca said:

Hello friend! I am just about to hit six weeks  gluten free. I am improving at a glacial pace and it feels scary and frustrating. I often poo yellow goo or greasy stuff and believe this is sometimes fat. I’ve replaced pots and pans, dog food, even toothpaste and dental floss. Total overhaul.

I’ll share this link that I found this week because it helped me feel better. It basically says celiac recovery can take a long time, and many people on here say progress is totally individual. I read a comment today where someone said they slept two years, just healing. All I want to do is sleep. Two years sounds like what I’ll need.

What was done to our bodies is brutal. I am telling myself that I will heal, but it will take time. It is not easy.

 With the link below, I bet some people take even longer. I literally feel surges in my body where it feels like I am purging and dumping what I thought was gluten, but now I think I must  be dumping antibodies.

I know you were asking about fat, and this isn’t exactly about that. But the encouragement it gave me is that this is a huge process and it can take time, but that healing is happening even if we don’t  notice it. Trees grow slow.

I wish you wellness.

“Research has suggested that the half life of IgA gluten antibodies is about two months and the half life of IgG antibodies is 30-60 days.  Translation: it can take 4 months to clear out the antibodies.  This means that antibody induced damage can go on for a minimum of two months. However, damage may last far longer, depending on other factors, like the overall state of your gut health, other pre-existing health conditions, your nutritional status, and how many gluten exposures you subject yourself to. In addition to the challenges associated with antibodies that present from ingestion of gluten, research has also shown that the mucosal lining of the intestine does not recover well, even when a gluten free diet is implemented. Specifically, the study notes that mucosal recovery was absent in a substantial portion of adults with celiac disease after treatment with a gluten free diet. This underscores even more how important it is to check food labels, confirm how food was prepared if not by you, and do your research on the testing and practices of any company who makes your food.”

From
https://www.glutenfreesociety.org/how-long-does-it-take-for-gluten-to-leave-your-system/

 

 

omg, I'm at the same point in this journey as you are, and experiencing the same thing. And have spent hours/days on the GFS website and you tube, it's been extremely helpful. 

"With the link below, I bet some people take even longer. I literally feel surges in my body where it feels like I am purging and dumping what I thought was gluten, but now I think I must  be dumping antibodies".

Same here, hard to explain the high antibody symptoms, but it's def a real symptom. It feels somewhat similar to high prolactin (I remember that when I was pregnant many moons ago) and at times, weirdly, it feels like my body is trying to sweat them out but is unable to do so.

 I'm also wondering if it's similar to increased TPOA's and/or TSH, as Selenium seems to 'bring them down' as does B1 and Niacinamide (thanks to @Posterboy @Kitty C

At first I felt great, so good in fact, I made numerous errors in my recovery that really set me back;

1) increased high oxalate containing foods 2) stopped B vitamins and desiccated thyroid supplement too soon 3) whey protein, goat whey and/or A2 dairy is a no go and seems to increase that 'high antibody feeling'.

 

 

[Dtoc]

29 minutes ago, Dtoc said:

omg, I'm at the same point in this journey as you are, and experiencing the same thing. And have spent hours/days on the GFS website and you tube, it's been extremely helpful. 

"With the link below, I bet some people take even longer. I literally feel surges in my body where it feels like I am purging and dumping what I thought was gluten, but now I think I must  be dumping antibodies".

Same here, hard to explain the high antibody symptoms, but it's def a real symptom. It feels somewhat similar to high prolactin (I remember that when I was pregnant many moons ago) and at times, weirdly, it feels like my body is trying to sweat them out but is unable to do so.

 I'm also wondering if it's similar to increased TPOA's and/or TSH, as Selenium seems to 'bring them down' as does B1 and Niacinamide (thanks to @Posterboy @Kitty C

At first I felt great, so good in fact, I made numerous errors in my recovery that really set me back;

1) increased high oxalate containing foods 2) stopped B vitamins and desiccated thyroid supplement too soon 3) whey protein, goat whey and/or A2 dairy is a no go and seems to increase that 'high antibody feeling'.

 

 

my bad, thanks to @knitty kitty 

[Scott Adams]

Hi @Dtoc, it's great to hear that you are finding answers for your health issues. Have you been diagnosed with celiac disease? How long have you been gluten-free?

[Dtoc]

32 minutes ago, Scott Adams said:

Hi @Dtoc, it's great to hear that you are finding answers for your health issues. Have you been diagnosed with celiac disease? How long have you been gluten-free?

my Mom had Celiac, (AI also runs rampant throughout my family), but I never gave it much thought and then shortly after turning 60, everything just went downhill. My energy tanked, I was not digesting much of anything, lost weight and then a few months ago I broke out in rash/hives/scabs, which in hindsight, looked exactly like that DH. And that lead me to this website, which in turn prompted me to get genetically tested. I have the HLA DQ 2, 1 and 3 which was enough of a confirmation to prompt me to change my eating habits ASAP!! 

I am quite shocked at the damage gluten does over time (and try my best not to think about it too often) I initially thought it was Lyme (tested positive 3 yrs in a row, and 2 dogs don't help, lol) and due to the many Hashimoto family members, I proactively started taking desiccated thyroid (w/out the T3, T4) and my thyroid panel was perfect. So I'm wondering what it would have been had I NOT taken the glandular, hahaha!!

I'm closing in on 7 weeks gluten-free and also grain free. It's a painfully slow process, lots of ups/downs. But even the most minor improvements keep me on track; the cysts on my scalp have reduced to a head of a pin, the daily 'skin dust' on my calves is gone, and the GB/Stomach pain is now only about 10% of what it was. The energy is returning, albeit slowly and on select days.

This site is such a Godsend!! When you read about others experiencing the same bizarre thing you are, it's comforting to know you're not losing your mind!!

[Scott Adams]

Thank you! This article may be helpful:

 

[knitty kitty]

@Dtoc and all,

Just a little side note...

That "daily skin dust" on your calves sounds similar to the dust I had on my feet and calves when I had deficiency in Vitamin B 3, Niacin. 

It starts with"dust', but it can get worse.  Rough, scale-y and bumpy skin appears on hands, feet, and neck (called boots and gloves of pellagra).  A reddening or darkening of the skin and blisters occur on skin exposed to the sun.  

Vitamin B 3 deficiency is called Pellagra.  Diarrhea, dermatitis and dementia are the "three d's of pellagra."   My doctors did not connect my symptoms with vitamin deficiencies.  My GP referred me to a gastroenterologist, a dermatologist and a psychologist.  My symptoms improved only once I started supplementing with Niacin (and the other essential vitamins and minerals).  It's unusual to have a deficiency in just one vitamin.  Celiac malabsorption can affect them all.  

I'm so glad you're taking your B vitamins!   Cheers!

[Wheatwacked]

There is no single "magic bullet". Remember the phrase "there's a pill for that"? I think they were overenthusiastic.  We have been advised to eat a "Healthy diet" that over the past sixty years has led to obesity, autoimmune diseases and metabolic diseases.

High TSH levels usually indicate hypothyroidism, and low TSH levels usually indicate hyperthyroidism.  Since iodine is used to make thyroid hormones, an iodine deficiency means your body can’t make enough of them, leading to hypothyroidism.  Since 1970 the iodine intake of the American population has decreased by 50% although officially we are iodine sufficient. It's been taken out of the bread we eat, we are advised to avoid salt (iodized table salt was a source for iodine), and the high carb diet is killing off the gut bacteria lactobacillus which supplies us with the extra lactase we need to digest lactose in milk, so we lose the third major source of iodine in our diet. 

Note that in this quote they don't say no relationship, just no studies

Quote

Iodine has been suggested to protect against breast cancer, but there are no epidemiologic studies on individual risk. An interesting finding is that in areas where the exposure to both selenium and iodine are high (e.g., Japan), the risk of breast cancer is lower than in areas where selenium is high and iodine low (e.g., United States)   https://aacrjournals.org/cebp/article/29/7/1335/72349/Serum-Iodine-and-Breast-Cancer-Risk-A-Prospective

Quote

 18.7 million people worldwide received a cancer diagnosis in 2010, Fast forward to 2019, and those numbers had increased significantly, with 23.6 million people receiving a new cancer diagnosis   https://www.medicalnewstoday.com/articles/are-cancer-rates-really-on-the-rise-worldwide#What-forms-of-cancer-are-on-the-rise?

Quote

Median UIC [urine iodine concentration] has shown a decreasing trend from 320 μg/L in 1974 to 144 μg/L in 2010, suggesting a more than 50% reduction in dietary intake. Thirty-six percent of US women had UIC < 100 μg/L, and 16% of women had UIC < 50 μg/L, signifying that 2.2 million women have low or deficient iodine intakes. The downward trend from iodine sufficiency in the early 1970s to iodine deficiency has plateaued at a level significantly below sufficiency for women of reproductive age in the USA. A Review of Iodine Status of Women of Reproductive Age in the USA

 Gall Bladder, A Vital Organ That is Being Removed At Alarming Rates  Choline – Used by doctors since 1947. Choline is essential to effectively metabolize fat, cholesterol, proteins, and carbohydrates. Experience has shown that SP Choline is been a Nutritional Essential for people who suffer severe gall bladder symptoms and/or after gall bladder removal.

[Dtoc]

8 hours ago, Wheatwacked said:

There is no single "magic bullet". Remember the phrase "there's a pill for that"? I think they were overenthusiastic.  We have been advised to eat a "Healthy diet" that over the past sixty years has led to obesity, autoimmune diseases and metabolic diseases.

High TSH levels usually indicate hypothyroidism, and low TSH levels usually indicate hyperthyroidism.  Since iodine is used to make thyroid hormones, an iodine deficiency means your body can’t make enough of them, leading to hypothyroidism.  Since 1970 the iodine intake of the American population has decreased by 50% although officially we are iodine sufficient. It's been taken out of the bread we eat, we are advised to avoid salt (iodized table salt was a source for iodine), and the high carb diet is killing off the gut bacteria lactobacillus which supplies us with the extra lactase we need to digest lactose in milk, so we lose the third major source of iodine in our diet. 

Note that in this quote they don't say no relationship, just no studies

 Gall Bladder, A Vital Organ That is Being Removed At Alarming Rates  Choline – Used by doctors since 1947. Choline is essential to effectively metabolize fat, cholesterol, proteins, and carbohydrates. Experience has shown that SP Choline is been a Nutritional Essential for people who suffer severe gall bladder symptoms and/or after gall bladder removal.

Iodine 320 to less than 50 in some women?? Good God, no wonder breast cancer exploded. And it came out of nowhere!! It was like all of a sudden, in the late 70's/early 80's breast cancer had become every woman's nightmare. I also remember how the 'experts' tried to sell us on Soy, comparing US women's health to that of Japan. Little did we know the 'Soy' they were selling here was no where near comparable to the soy the Japanese were/are consuming. 

I thought my gallbladder was destroyed but refused to have it removed. I am now taking choline citrate 2x a day and WOW what a difference!!!! But had I taken it before going gluten-free, I don't think it would have made a difference. 

 

 

[Dtoc]

11 hours ago, knitty kitty said:

@Dtoc and all,

Just a little side note...

That "daily skin dust" on your calves sounds similar to the dust I had on my feet and calves when I had deficiency in Vitamin B 3, Niacin. 

It starts with"dust', but it can get worse.  Rough, scale-y and bumpy skin appears on hands, feet, and neck (called boots and gloves of pellagra).  A reddening or darkening of the skin and blisters occur on skin exposed to the sun.  

Vitamin B 3 deficiency is called Pellagra.  Diarrhea, dermatitis and dementia are the "three d's of pellagra."   My doctors did not connect my symptoms with vitamin deficiencies.  My GP referred me to a gastroenterologist, a dermatologist and a psychologist.  My symptoms improved only once I started supplementing with Niacin (and the other essential vitamins and minerals).  It's unusual to have a deficiency in just one vitamin.  Celiac malabsorption can affect them all.  

I'm so glad you're taking your B vitamins!   Cheers!

omg, that has to be why I feel so good when I take niacinamide!! I was afraid I was taking too much and then I read on one of @Wheatwacked posts recommending the 500mg's B1 and B3. I've also purchased NMN, but have yet to try it.

Have you found that regular niacin works better than niacinamide?

This is gross, but whenever I changed out of my leggings/tights, the inside was completely covered in skin flakes, ugh, I attributed it to getting old!!! 

I've recently concocted my own after shower spray, it includes liquid zinc, liquid mag, MCT oil, B vitamins, Niacinamide and the essential amino acids. It's helped a lot with the skin dust and the scab rash on my shoulders/back/chest. 

I will not stop those B vitamins again!! Think I thought that because I eat meat, the B's were covered, but the malabsorption is most likely something that takes a long time to repair.