Why do I still have malabsorption problems.

[charks]

I have been on a really strict gluten and diary free diet since May. I cook all my own food, don’t eat processed foods and never eat out. In general I feel very healthy but if I don’t eat a high fat/protein diet I will lose weight. My BM are still very random, sometimes twice sometimes once a week. And they are pale and very stinky ( I know this is due to my to my high fat diet). And my latest blood tests show that I have low serum creatinine levels. Which is very strange considering the amount of protein I eat. I think these symptoms show that I still have problems absorbing nutrients. Why? I understand villi in the gut regenerated every 5 – 7 days. My villi must be normal by now. Why do I still have problems?. So why do people on this site say it takes up to 2 years for the gut to heal? I would assume on a gluten free diet healing would take place much quicker. Why do some celiacs have a permanent problem gaining weight and others don’t? Why do we often have to take supplements for the rest of out lives if our guts have healed? It’s all a mystery to me. Can anyone help?

 

 

[Scott Adams]

This is a complicated question, and there is no easy answer. This article illustrates this:

 I am in the process of getting an extensive ALCAT food sensitivity test, I received the results, and will be writing a detailed article on my own experience of eliminating foods that I react to, and rotating other foods.

Are you eating oats? About 10% of celiacs are also sensitive to oats. Other food sensitivities can also increase the same blood markers as gluten, but you mentioned you are also dairy-free as well:

 

[charks]

Thanks Scott.

I am very vigilant about my diet. I haven't eaten outside my home since last April and everything I eat is 100% gluten free - I am paranoid about it. No gluten is allowed in my house. But my weight has been slowly going down in the last few weeks. The only thing that has changed recently is the fact I have stopped taking B12 supplements. You may remember my last post. My last blood works showed B12 levels of 1777 and my doctor told me to stop taking supplements.  

But over the past few weeks I have slowly become depressed, irritable and fatigued. My sense of balance is getting worse and I am experiencing impaired concentration and short term memory loss.  My speech problem is getting worse and I feel cold all the time. I think my B12 level must have dramatically dropped. Could this be also affecting my weight?

My problem may seem trivial but I think it is better to nip problems in the bud.    

[Scott Adams]

It’s worth adding Vitamin B12 back into your routine to see if things improve. From my understanding it isn’t toxic even if your levels of it are high.

[charks]

It makes me wonder how many of celiac problems are due to B12 deficiencies. My recent experience has shown me how essential it is, and how terrible you feel when you have low levels. 

[knitty kitty]

charks, 

There are EIGHT B vitamins.  They all work together.  Supplementing just one of the eight B vitamins won't cut it.  

Vitamin B12 needs B6 pyridoxine and folate B9 to work properly.  Excess levels of B12 on your tests shows me (not a doctor) that B12 is not being properly utilized.  

B6 pyridoxine needs help from riboflavin B2.  Niacin B3 needs riboflavin to help make energy along with thiamine B1.

These other B vitamins are not as easily and as inexpensively tested for as B12.  Blood tests don't accurately reflect how much of these B vitamins are in the body tissues where they are utilized.  

 

On 2/28/2021 at 11:13 AM, charks said:

 

But over the past few weeks I have slowly become depressed, irritable and fatigued. My sense of balance is getting worse and I am experiencing impaired concentration and short term memory loss.  My speech problem is getting worse and I feel cold all the time. I think my B12 level must have dramatically dropped. Could this be also affecting my weight?

 

These are all symptoms of thiamine deficiency!  I've experienced thiamine deficiency first-hand.  Thiamine is the first vitamin to show symptoms of deficiency because it cannot be stored long and is needed by every cell.

Every cell depends on thiamine to provide energy for every function of every cell in your body.  Your body can't store Thiamine.  You can get low and have symptoms in as little as nine days.  

You have cut out gluten which is required by law to be enriched with vitamins to replenish what was destroyed in processing.  The vitamins used to enrich wheat are cheap synthetic vitamins which are not easily utilized by the body.  When you cut out gluten, you cut out those vitamin supplements added to the wheat products. 

Take a B Complex supplement!  While your intestines heal, they can't absorb nutrients or vitamins well.  The eight B vitamins are water soluble and can not be stored long.  (B12 is the exception.  It can be stored in the liver.)  They are all interdependent.  

 

[Kate333]

On 2/28/2021 at 9:13 AM, charks said:

Thanks Scott.

I am very vigilant about my diet. I haven't eaten outside my home since last April and everything I eat is 100% gluten free - I am paranoid about it. No gluten is allowed in my house. But my weight has been slowly going down in the last few weeks. The only thing that has changed recently is the fact I have stopped taking B12 supplements. You may remember my last post. My last blood works showed B12 levels of 1777 and my doctor told me to stop taking supplements.  

But over the past few weeks I have slowly become depressed, irritable and fatigued. My sense of balance is getting worse and I am experiencing impaired concentration and short term memory loss.  My speech problem is getting worse and I feel cold all the time. I think my B12 level must have dramatically dropped. Could this be also affecting my weight?

My problem may seem trivial but I think it is better to nip problems in the bud.    

First, I wouldn't assume you aren't healing fast enough or you aren't properly absorbing food.  You have only been on a gluten-free diet for 9 mos; it takes some folks longer than others to heal.  Everyone is different.

Second, you might be losing weight because you are inadvertently limiting your food consumption (total calories) because of your food/gluten "paranoia"? 

Third, many of your symptoms (esp. those I highlighted in bold face above) are also CLASSIC physical symptoms of chronic, severe depression and/or anxiety (D/A), as are digestion issues, aches/pains, chills, and weight loss (or gain).   I've been there, have also experienced so many of the same symptoms.  In fact, before my diagnosis, I didn't realize that D/A can create so many PHYSICAL probs.

I've found these sites very helpful in explaining in detail how anxiety/depression affect the nervous system/body, thus triggering many physical symptoms and tips to reduce it:  anxietycentre.com and gracepointwellness.org.

Counseling and/or a low dose antidepressant--at least in the short term--may be very helpful.  It has certainly helped me.  I would skip the vitamin/supplement advice, esp. if none of your medical/lab tests show you need any more.   

[Posterboy]

On 2/26/2021 at 5:25 AM, charks said:

Why do we often have to take supplements for the rest of out lives if our guts have healed? It’s all a mystery to me. Can anyone help?

Charks,

Knitty Kitty beat me too it!

Doctor's don't study nutrition you have all the symptom's of  Refeeding Syndrome brought on by Low Magnesium and Thiamine levels!

I have had that Creatinine in the kidneys and taking Benfotiamine helped it!

See this research entitled

"Metabolic Benefits of Six-month Thiamine Supplementation in Patients With and Without Diabetes Mellitus Type 2"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921172/

quoting from the research....

"In all groups, there was a significant decrease in total cholesterol after three months (p = 0.03) as well as in HDL cholesterol after six months of thiamine supplementation (p = 0.009). Significant improvements were also observed in the mean serum levels of creatinine (p = 0.001), as well as thiamine and its derivatives in both serum and urinary levels across follow-up visits"

See this research also and see Table 1....by the 7th day....their creatinine levels improved after starting Thiamine...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738315/

This BMJ article is good too!

And well titled "THE REFEEDING SYNDROME, DON'T FORGET THIAMINE DEFICIENCY"

https://www.bmj.com/rapid-response/2011/10/30/refeeding-syndrome-dont-forget-thiamine-deficiency#:~:text=THE REFEEDING SYNDROME%2C DON'T FORGET THIAMINE DEFICIENCY. In,management. 1) Crook M%2C Hally V%2C Panteli 

Here is my Posterboy blog posts that explain how Refeeding Syndrome  happens in a "Celiac Crisis"

See also this article that explains that being low in Thiamine can thin someone's Villi!

I have been you!

Taking Magnesium Citrate or Magnesium Glycinate with Benfotiamine with meals and a  B-Complex can help your Refeeding Syndrome....

I know it did help mine....going  undiagnosed.....my doctor's didn't know why I had malnutrition issues either....

Doctor's need to "Awaken" to the Thiamine deficiency happening in Autoimmune diseases and their patients will do better, much quicker....

But then,.....their patients wouldn't keep coming back...

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

There is "No Formula" but taking Magnesium Citrate or Magnesium Glycinate with meals and a B-Complex and Benfotiamine or an other Fat Soluble B1 has been supported by many people have tried them.

Magnesium works so fast for fatigue like within weeks....that most people sware by it....when they take it as tablet or capsule in the Magnesium Citrate form.....it surely wouldn't hurt to give it a try...

The biggest issues with B-Vitamins is frequency....and in Thiamine's case finding a Fat Soluble form...

Taking them once a day....them being water soluble is just not frequent enough to do much good....

See my Posterboy blog post that explains why taking a B-Comples 2x to 3x a day works 3x as fast as once a day.....

Like a low bioavailablity due to low Stomach Acid or you also have SIBO....which devour our B-Vitamins before we can absorb them ourselves as an example....

B-Vitamins can be taken for a "Season in Time" until you catch up....many times 6 months is enough for most people....some people might require them for as long as year.....but you shouldn't have to take them for year(s) or something else is wrong...

I no longer have the need for B-Vitamins....but I did take them for quite awhile before I caught up with them....

But for the best results you want to take Fat Soluble Thiamine aka B-1 like Benfotamine, Lipothiamine or Allithiamine since they have a much higher bioavailabilty....

I do still take Magnesium Glycinate.....because Magnesium helps so many things!

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

Good luck on your continued journey.....

As always, “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2:7 

this included.

Posterboy by the Grace of God

[knitty kitty]

SSRI's can cause continuing villi damage.

 

If the body is given the building blocks it needs, the body will heal itself.  

You are sick because you are vitamin deficient.  

You are not sick because you are pharmaceutical deficient.

This attitude of "take a pill" is akin to "it's all in your head".

You get depressed because your body is not getting the things it needs to function properly.  It's a warning, a call for help.  Masking the symptoms of depression and anxiety with pills only covers up the real problem of malnutrition.

When thiamine deficiency is suspected, doctors administer thiamine without waiting for vitamin testing because blood tests don't accurately reflect deficiencies.  That is, if the doctor even thinks about vitamin deficiencies.  Usually they don't because they haven't been educated about vitamins and minerals.  They're trained to prescribe pharmaceuticals.  Pharmaceutical companies fund medical training universities.  

Take a  b complex.  

 

 

[charks]

Hi Knitty Kitty

Following your advice I already take B1. And a B complex. Back in April when I had my seizure - which led to discovery of celiac - I was in  terrible way.  I couldn't walk, think or talk properly. I had no strength in my legs or arms and had no bladder control. Within 3 days of taking B12 I started being able to walk again and things got gradually better. Now, due my doctor who is obviously one of the doctors you mentioned not trained in the importance of vitamins, I feel I am heading back to that dark place. I just don't understand why my doctor told me to stop taking vitamin B12 when there are no known side effects. Even the BMJ states that it is non toxic. 

Sometimes I feel that doctors are our enemies. When will they actually start being proactive instead of reactive?

Well that's my little rant over. You celiacs in the USA don't know how lucky you are compared to us in the UK. 

[knitty kitty]

 

Charks,

I understand how disconcerting not having your body function properly.  I've experienced the same.

How much thiamine are you taking? 

I had to take 300mg before I really started feeling better.  

Niacin, riboflavin, and B6 pyridoxine help, too.  

The B vitamins are water soluble.  You might try taking the B complex twice a day.