Symptoms, possible celiac

[DK1984]

8 hours ago, knitty kitty said:

Hello,

From the description of your stools, you may be having fat malabsorption which is common in Celiac Disease.  

In early Thiamine insufficiency, the body starts conserving thiamine by burning our own muscles for energy.  Your weight or body mass index may have changed.  Is your added middle fat or edema (water retention)?   

The gauntness of your face and sunken eyes reflect your body's depletion of fat underlying the skin.  Sunken eyes  and dark undereye circles can also denote Vitamin B12 deficiency.  

Thiamine Vitamin B1 is required by the gallbladder in order to produce bile which helps digest fats.  The color changes in the stool can reflect less bile (bile makes poop brown) and fat malabsorption (the yellow and mucus part).

Checking for nutritional deficiencies is part of proper follow up care for Celiac people.  

Ask your doctor to test for deficiencies in Thiamine, B12, Vitamin D and magnesium.  

Hope you find answers soon. Keep us posted on your progress!

 

My vitamin D is good. The range should be 50nmol/L or more and mine is 100.

i just spend 1 hour looking all my blodtest through for the last 10 years. And i cannot find even 1 time where my doctor tested me for thomasine, B12 or magnesium. How could he missed the test for those things when i have complained about feeling bad for so long🤦‍♂️.

to answer your question regarding belly. 
it is not water retention, it is fat. I am thin so it is not like i have a really Big belly but i do have some fat handles there. Its like most of my fat beeing stores there

My eyes have lost orbital fat all around it and my cheeks have Also lost fat. And Also my temples seems to have lost a little fat. Offcourse i am getting older and i hear that its normal to loose facial fat, so that might just be me ageing? But other people and friends i know do not have that gaunt looking face and they are my age or older.

i tell you one thing.

i was glutenfree for the last 3 weeks, but started eating gluten 2 days ago, because i have an upcoming biopsy to show if i have celiac or not.

-the first Day (Yesterday) after eating gluten again, i had a headache that was so bad, that i havnt had for years and i had really bad nasal congenstion that i Also have not had for years.

-the second Day (today) my body/skeleton fells like it has been lifting weight for 10 days in a row. (and i have not moved a muscles at all) its hard to explain how it feels but its like the bones all over my body is sore somehow, you know what i mean? Really difficult for me to explain

[trents]

Sounds like you are experiencing a systemic inflammatory response. Do you have any gut pain or GI distress when you consume gluten?

[shadycharacter]

3 hours ago, DK1984 said:

i just spend 1 hour looking all my blodtest through for the last 10 years. And i cannot find even 1 time where my doctor tested me for thomasine, B12 or magnesium. How could he missed the test for those things when i have complained about feeling bad for so long🤦‍♂️.

B12 is really important. Sometimes doctors assume b12 must be OK if you don't have macrocytic anemia but that's not the case. You can be deficient anyway. 

[DK1984]

42 minutes ago, trents said:

Sounds like you are experiencing a systemic inflammatory response. Do you have any gut pain or GI distress when you consume gluten?

usually i allways wake up with small gut pain that subsidie during the Day and after a visit or 2 to the toilet, but lately i have had more severe gut pain and that was Also why i when to the hospital 3 days back and they checked my colon with a camera in fear of cancer, but luckily they did not find anything wrong

my stools is Also looking strangely lately

44 minutes ago, shadycharacter said:

B12 is really important. Sometimes doctors assume b12 must be OK if you don't have macrocytic anemia but that's not the case. You can be deficient anyway. 

When i go to get my biopsy on the 2. November i Will ask Them to check for B12

[trents]

Do you ever notice mucous in your stool or an oily residue? Does it float or sink?

[knitty kitty]

Unfortunately, doctors are not given much training in vitamins.  Doctors are usually trained in pharmaceutical company funded medical learning institutions.  Doctors are trained to prescribe pharmaceuticals.

Blood tests for vitamin deficiencies are not accurate because vitamins are used inside cells.  There can be vitamin deficiency symptoms before deficiency shows up in blood tests.  Blood tests for deficiencies should be done before supplementing.  Because supplements can show up in blood tests giving false "normal" or "high" readings.

B12 deficiency can cause neurological symptoms before blood tests show deficiency or anemia.  

Your symptoms after reintroducing gluten sounds like an increase in inflammation. They will level out as you continue  with your gluten challenge.  

Try including more Vitamin C foods (oranges for example).  Vitamin C helps with inflammation.

Hang in there.  I know how rough gluten challenges are.

[DK1984]

34 minutes ago, trents said:

Do you ever notice mucous in your stool or an oily residue? Does it float or sink?

Yes i Also notice that lately. But i would say that when i did went glutenfree i consumed alot of advocado and oliveoil Daily to get enough calories, so that could be why my stool is oily

[DK1984]

35 minutes ago, knitty kitty said:

Unfortunately, doctors are not given much training in vitamins.  Doctors are usually trained in pharmaceutical company funded medical learning institutions.  Doctors are trained to prescribe pharmaceuticals.

Blood tests for vitamin deficiencies are not accurate because vitamins are used inside cells.  There can be vitamin deficiency symptoms before deficiency shows up in blood tests.  Blood tests for deficiencies should be done before supplementing.  Because supplements can show up in blood tests giving false "normal" or "high" readings.

B12 deficiency can cause neurological symptoms before blood tests show deficiency or anemia.  

Your symptoms after reintroducing gluten sounds like an increase in inflammation. They will level out as you continue  with your gluten challenge.  

Try including more Vitamin C foods (oranges for example).  Vitamin C helps with inflammation.

Hang in there.  I know how rough gluten challenges are.

Thanks 🙏

i am gonna hang in there.

i have surgery in my nose on tuesday to correct a deviated septum and to create drainage for my maxilaris sinuses so after that i Will be laying on the sofa for 2 weeks taking morphine Daily.

[trents]

25 minutes ago, DK1984 said:

Yes i Also notice that lately. But i would say that when i did went glutenfree i consumed alot of advocado and oliveoil Daily to get enough calories, so that could be why my stool is oily

With celiac disease, damage to the villi inhibits the absorption of fats in our food such that they go undigested and remain in our stool. Mucous in the stool is probably the damaged lining of the bowel soughing off.

[knitty kitty]

@DK1984,

You may want to focus on getting more protein in your diet.  Fats are important, but proteins are needed to build and repair our bodies.  

I came across an old study on nutrition which stated when there's a protein deficiency the fat pads around the eyes disappear as does the fat pads in the cheeks.  

Anesthesia has been known to deplete B12 stores.  Heads up on that.  Vitamin C and Zinc help with healing and preventing infection.  I hope your surgery goes well! 

Keep us posted!  

[DK1984]

14 minutes ago, knitty kitty said:

@DK1984,

You may want to focus on getting more protein in your diet.  Fats are important, but proteins are needed to build and repair our bodies.  

I came across an old study on nutrition which stated when there's a protein deficiency the fat pads around the eyes disappear as does the fat pads in the cheeks.  

Anesthesia has been known to deplete B12 stores.  Heads up on that.  Vitamin C and Zinc help with healing and preventing infection.  I hope your surgery goes well! 

Keep us posted!  

Thank you alot🙏
First step surgey

next step biopsy to check for celiac

after that i Will keep you guys Updated🙏🙏☺️

[Wheatwacked]

I was always a mouth breather and had sleep apnea until I started gluten free diet at 63 years. It will clear up.

Starting GFD and increasing your vitamin D blood level to 80 ng/ml will help with the histamine. Imagine vitamin D is the sheriff and the immune cells (T,B, histomine, etc. are the deputies. Without enough sherrifs to direct them, the others turn into a vigilante mob.

What is your homocysteine blood test results? A high result + issues digesting fats could indicate not enough choline in your diet in addition to not enough Thiamine. Only 10% eat the minimum RDA of choline. and according to NHANES data the upper 10% of intake have the healtiest outcomes, so you want as much as 3000 mg per day.

Are you following a low fat diet? That low fat is better for you is a false concept that has been debunked. In fact one study in San Francisco showed a full fat DASH diet was better than the low fat, original version.  Fat is an important part of our apistat system so our bodies know when they are satiated. No fat means you don't feel full unless you load up on carbs.

[Outlaw]

I hav been diagnosed with lactose intolerant. But now I read an article the being gluten sensitive can cause lactose intolerance. My doctor said highly unlikely. I made the decision to go gluten free but still hav bathroom issues. So my doctor wants to test for microscopic colitis.

Anybody agree with this??

thx Kelly 

[trents]

Welcome to the forum, Outlaw!

First, "gluten sensitive" is a broad term that encompasses two different health problems involving gluten. One is know ad celiac disease. Have your heard of this? The other is known as NCGS (Non Celiac Gluten Sensitivity). 

People with celiac disease experience inflammation and damage to the villi that line the small bowel. This does not happen with NCGS. But but celiac disease and NCGS can cause a host of other health problems and many of them do not involve GI distress. Celiac Disease and NCGS have many of the same symptoms and both demand the elimination of gluten (totally) from the diet. But that is harder to do that most people realize since it involves eliminating both small and large sources of gluten. This might be helpful: 

Are you still eating dairy. Both those with celiac disease and NCGS can be lactose intolerant. It is very common in both groups. 

Edited October 12, 2022 by trents

[Outlaw]

Thx much. I hav just started my journey with a book Gluten free 101 for dummies. I’m two months out for a biopsy to check microscopic colitis. Until then all I can do is be diligent, no dairy or gluten. Although gluten hides in a lot of different places.

thx Kelly 

[trents]

Just want to make sure you realize that if you want to be tested for celiac disease you must be eating regular amounts of gluten (1-2 slices of wheat bread or the equivalent daily) leading up to the antibody testing and for two weeks leading up to an endoscopy biopsy. Many people have invalidated their test results by starting the gluten-free diet beforehand. There is no test available for NCGS so celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS.

[Outlaw]

5 minutes ago, trents said:

Just want to make sure you realize that if you want to be tested for celiac disease you must be eating regular amounts of gluten (1-2 slices of wheat bread or the equivalent daily) leading up to the antibody testing and for two weeks leading up to an endoscopy biopsy. Many people have invalidated their test results by starting the gluten-free diet beforehand. There is no test available for NCGS so celiac disease must first be ruled out in order to arrive at a diagnosis of NCGS.

Not sure I want to try two pieces of bread . I can’t walk my dog or even play golf right now for fear of having an accidental bowel movement!🙄

[knitty kitty]

@Outlaw,

Welcome to the forum, Kelly!

Lactase is the enzyme that "digests" lactose, the sugar in milk.  Lactase is made by cells in the tips of the villi in the small intestine.  As the antibodies against gluten also attack our own cells, these lactase producing cells get damaged and can no longer produce lactase resulting in lactose intolerance.  

How long have you been gluten free?  If it hasn't been more than a few days, you could still get blood tests for Celiac Disease.  If it's been longer and you are still so I'll, you may want to discuss with your doctor having genetic testing done for common Celiac markers.  

Also discuss Gastrointestinal Beriberi with your doctor.

What foods are you including in your diet currently?

 

2 hours ago, Outlaw said:

I hav been diagnosed with lactose intolerant. But now I read an article the being gluten sensitive can cause lactose intolerance. My doctor said highly unlikely. I made the decision to go gluten free but still hav bathroom issues. So my doctor wants to test for microscopic colitis.

Anybody agree with this??

thx Kelly 

 

[Outlaw]

2 minutes ago, knitty kitty said:

@Outlaw,

Welcome to the forum, Kelly!

Lactase is the enzyme that "digests" lactose, the sugar in milk.  Lactase is made by cells in the tips of the villi in the small intestine.  As the antibodies against gluten also attack our own cells, these lactase producing cells get damaged and can no longer produce lactase resulting in lactose intolerance.  

How long have you been gluten free?  If it hasn't been more than a few days, you could still get blood tests for Celiac Disease.  If it's been longer and you are still so I'll, you may want to discuss with your doctor having genetic testing done for common Celiac markers.  

Also discuss Gastrointestinal Beriberi with your doctor.

What foods are you including in your diet currently?

 

 

Currently no diary and reading labels no gluten. About two weeks now.

[knitty kitty]

But what are you eating?  

Have you tried keeping a food journal?

Does your doctor aware you have diarrhea that badly? 

I'm concerned.  I had accidental bowel movements when I had Gastrointestinal Beriberi, a form of thiamine deficiency that doctors overlook.  If it is thiamine deficiency, taking Thiamine should help stop it.  

[DK1984]

18 hours ago, Wheatwacked said:

I was always a mouth breather and had sleep apnea until I started gluten free diet at 63 years. It will clear up.

Starting GFD and increasing your vitamin D blood level to 80 ng/ml will help with the histamine. Imagine vitamin D is the sheriff and the immune cells (T,B, histomine, etc. are the deputies. Without enough sherrifs to direct them, the others turn into a vigilante mob.

What is your homocysteine blood test results? A high result + issues digesting fats could indicate not enough choline in your diet in addition to not enough Thiamine. Only 10% eat the minimum RDA of choline. and according to NHANES data the upper 10% of intake have the healtiest outcomes, so you want as much as 3000 mg per day.

Are you following a low fat diet? That low fat is better for you is a false concept that has been debunked. In fact one study in San Francisco showed a full fat DASH diet was better than the low fat, original version.  Fat is an important part of our apistat system so our bodies know when they are satiated. No fat means you don't feel full unless you load up on carbs.

I cannot se my doctor has tested for homocysteine.

i from Denmark so maybe it is written another Way in the bloodtests🤷‍♂️
 

i am not following a Low fat diet. When i ate glutenfree for 2 weeks i ate alot of advocado, almonds, lactosefree yougurt, i put on olive oil on all my foods, ate bacon.

But i guess that, if i have celiac, and have had for 10-15 years, then my intestine is probly damage so much that it dosnt matter what i eat at the moment, my body just cannot take it in.

[trents]

Avocado, yogurt and bacon are all high histamine foods. Avocado is the worst of the bunch because not only is it high in histamine itself, it also triggers histamine production in the body.

[DK1984]

31 minutes ago, trents said:

Avocado, yogurt and bacon are all high histamine foods. Avocado is the worst of the bunch because not only is it high in histamine itself, it also triggers histamine production in the body.

Oh s$#&. Hehe

well would you you advise me to eat Then? 
And keep in mind im pretty thin so i need calories.

 

[trents]

In general, try to stay away from cured meat products, aged cheeses and things that are pickled and fermented. Eat fresh food whenever possible instead of canned. Histamine counts increase with time for all food that is stored/preserved in some way. Avoid Avocados, bananas and tomatoes. Those three are known to not only be high in histamine but to also trigger histamine in the body. Have you researched the low histamine diet? Do that for pointers of what you should avoid and what you can still eat. I find it impossible to totally avoid all high histamine foods but it is possible to avoid the very worst offenders or at least cut down on them. That and using a second or third (non drowsy) antihistamine like zyrtec or allegra helps me keep histamines more or less under control. These measures help but do not totally eliminate the issue which is what we often have to be content with in health problems.

Edited October 12, 2022 by trents

[DK1984]

17 minutes ago, trents said:

In general, try to stay away from cured meat products, aged cheeses and things that are pickled and fermented. Eat fresh food whenever possible instead of canned. Histamine counts increase with time for all food that is stored/preserved in some way. Avoid Avocados, bananas and tomatoes. Those three are known to not only be high in histamine but to also trigger histamine in the body. Have you researched the low histamine diet? Do that for pointers of what you should avoid and what you can still eat. I find it impossible to totally avoid all high histamine foods but it is possible to avoid the very worst offenders or at least cut down on them. That and using a second or third (non drowsy) antihistamine like zyrtec or allegra helps me keep histamines more or less under control. These measures help but do not totally eliminate the issue which is what we often have to be content with in health problems.

Allright.

but i have to eat gluten the next 2-3 weeks because of my upcoming biopsy so i have to wait with a Low histamine and no gluten diet until after the biopsy and Then i Will try that out.

thanks so much for helping me🙏🙏🙏