strange symptoms/ diagnosis accuracy

[HWB]

Hi all

 

I'll keep this brief because it's too complicated to get into fully. But I'm interested to hear from some long term celiac people about the following / if they think my diagnosis was correct and if anyone has experienced similar symptoms.

 

In my early 20's I was very run down and diagnosed with CFIDS.

One of the first treatments I sought was with  a nutritionist who predated a lot of the paleo type doctors around now. He oriented me toward meat and fat based eating. My diet up until then was lots of cereal/grains, milk, and also normal varied everything else.

1-2 days after ditching grains my stool changed drastically and I was passing hard compact stuff which was difficult to move through. At first I thought it was just consequence of eating meat which is denser than other types of foods.Out of necessity eventually I added in ice cream in order to alleviate constipation. I never experienced negative effects from this, despite public opinion that sugar and milk were 'bad'. decades on I still freely eat lots of ice cream whenever I wish, no ill effects.

Now for the odd part.

The hard stools have never ceased after decades. And it's not caused by the meat, as it can happen usually just by avoiding gluten, and sometimes needing to add in a probiotic. I'm 95% sure that this is a gigantic cleansing reaction from all the years of grains/gluten prior to switching diet. And some of it I'm also creating  by not being 100% gluten free any more, but over all it's mainly a cleansing reaction. 

Has anyone experienced anything remotely like this?

About 9 years ago I began to experience worse gut symptoms, extreme pain and vomiting. I initially thought it was gall bladder related but every test showed no gall problems (even though I still suspect the tests are not accurate)

I was in crisis thinking I needed surgery or something drastic and then the pain would go away completely on  a dime. And right at this time I began passing weirder forms of these hard stools that were especially hardened almost like plastic hard, or hard rubber. They had strange grooves in them and were distinct from the rest of the stool. It took some time of research and I found that the small intestine lining has folds called the plicae folds, which look exactly like the groove shape in these pieces of hardened stool. This is not to be confused with villi which are microscopic and can't be see. Plicae folds are macro scale.

 

These symptoms continue 9 years later. 5 or 10 times a year I get these intense pain episodes, cramping, temporary blockage of the intestines, vomiting, pass these objects and then I'm fine until the next time it happens.

 

I went for an endoscopy  when this started. The dr. only spent 10 minutes with me and said I had H Pylori. I couldn't even get a word in edgewise to expalin that I thought it was more complicated. He also took a biopsy to test for celiac and said the test was negative. As I understand it you're supposed to eat gluten continually for a long time prior to getting a celiac biopsy? I was not going to do this.

 

So I'm really wondering about the accuracy of my negative celiac diagnosis. I declined to take the 4 antibiotic cocktail for Pylori because I'm scared of antibiotics as I had a negative reaction once and suspect them in the etiology of my illness. However, I always keep an open mind to being wrong.

 

 

[trents]

You say, "The hard stools have never ceased after decades. And it's not caused by the meat, as it can happen usually just by avoiding gluten, and sometimes needing to add in a probiotic. I'm 95% sure that this is a gigantic cleansing reaction from all the years of grains/gluten prior to switching diet."

This confuses me. Are you saying the hard, compact stools are a cleansing action?

[HWB]

When I stick to a certain diet of gluten free, grain free, and mainly foods that I tolerate well, the flora in my gut changes pretty drastically. I'll often get a type of chemical taste in my mouth. And then I'll feel constipated as if hard stuff is stuck in my gut (which it is!). Then I pass these types of stools. I can't speak to everyone who experiences hard stool or the cause, but this is what happens with me. It's often a different color than the pther parts of the stool as well. I can switch this on/off pretty much at will by manipulating diet. Gluten will switch it off faster than anything. Probiotics and probiotic/prebiotic foods and certain polyphenolic foods will speed it up. So yes, I'm saying these types of stool are a cleansing of the small intestine, at least for me. 

 

I was reading through some other posts here and I think someone answered my question about accurate diagnosis already. The biopsy I had was taken from stomach, not small intestine. This seems like an inaccurate method to dx celiac.

 

[trents]

I'm wondering if you have a candida issue. Candida would feed off of carbs. When you eliminate grains from your diet you eliminate most carbs.

[HWB]

I don't limit carbs, just grain/starch. Yes candida was a big problem years ago, not sure about it now as I eat sugars freely (fructose/sucrose) with only positive outcome. I wish I could be a keto person but I can't derive any energy from fats. Thankfully I'm able to process sugars otherwise I'd be in a mess.

[RMJ]

It sounds like severe constipation. Do you eat much fiber?

[HWB]

I limit insoluble fiber like salads bc I feel horrible on them, even though I do love them. I eat some well cooked soluble fiber, but not a lot. Usually to taste. I'm sure there are a host of not good bugs inhabiting my gut and for some people fiber makes things a lot worse. I feel like my small intestine is at least healing and on the right path, even if I don't do things exactly perfectly. But my colon is inflamed and bloated almost all the time. Fiber aggravates this a lot.  A lot of so called healthy foods just make me feel terrible. 

                                                                   

[Scott Adams]

3 hours ago, HWB said:

I was reading through some other posts here and I think someone answered my question about accurate diagnosis already. The biopsy I had was taken from stomach, not small intestine. This seems like an inaccurate method to dx celiac.

 

 You are correct, a stomach biopsy would not diagnose celiac disease. Did you ever have an endoscopy done or a celiac disease blood panel? You may want to try eating 2 prunes after each meal, and if this aggravates your issue switch to prune juice.

[RMJ]

2 hours ago, HWB said:

I limit insoluble fiber like salads bc I feel horrible on them, even though I do love them. I eat some well cooked soluble fiber, but not a lot. Usually to taste. I'm sure there are a host of not good bugs inhabiting my gut and for some people fiber makes things a lot worse. I feel like my small intestine is at least healing and on the right path, even if I don't do things exactly perfectly. But my colon is inflamed and bloated almost all the time. Fiber aggravates this a lot.  A lot of so called healthy foods just make me feel terrible. 

                                                                   

My GI recommends methyl cellulose as a soluble fiber, because it doesn’t ferment in the colon as much as others.

[knitty kitty]

@HWB,

Long term infection with H. Pylori causes chronic constipation!!!

Long term H. Pylori infection can cause cancer and all sorts of gastrointestinal problems.  

Boost your vitamin intake, especially Vitamin D and the B vitamins, and...

Take the antibiotics to eradicate H. Pylori!

References:

Successful Helicobacter pylori eradication therapy improves symptoms of chronic constipation

https://pubmed.ncbi.nlm.nih.gov/30324767/

Long-term improvement in constipation-related symptoms after Helicobacter pylori eradication therapy

https://pubmed.ncbi.nlm.nih.gov/34791741/

The Effects of Vitamins and Micronutrients on Helicobacter pylori Pathogenicity, Survival, and Eradication: A Crosstalk between Micronutrients and Immune System

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8942682/

Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/33210299/

[Wheatwacked]

On 2/23/2024 at 4:16 AM, HWB said:

I initially thought it was gall bladder related but every test showed no gall problems (

Try increasing your intake of choline.  Eggs, Beef, Liver or supplement.  You can get tested for homocysteine.  High homocysteine, greater than 19, causes inflammation.  It is considered an independent marker of cardiovascular inflammation.  Most doctors are unaware of choline and 90% of us don't eat even the minimun RDA.  The RDA is the equivalent of 4 eggs a day.  Avoiding eggs, liver and beef you need to eat 10 cups of brocolli or equivelent a day. Even this otherwise excellent artical on homocysteine neglects choline.

     Measurement of homocysteine: a historical perspective   "Elevated plasma level of homocysteine is being increasingly associated with many diseases, including cardiovascular diseases, stroke, Alzheimer’s disease, non-alcoholic fatty liver disease (NAFLD), macular degeneration, renal dysfunction, diabetes, bone fracture and cancer... Some clinical studies have also shown that the increased total plasma homocysteine level correlates better than cholesterol with the risk of cardiovascular disease."

      CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY  "Poor food choices over time use up our bile salts and lead to all kinds of digestive problems from acid reflux, gas, and bloating to constipation, irritable bowel syndrome, and diverticulitis. Choline is very effective in restoring GI tract health and improving digestion."

The sugar thing is the man who worked to raise tariffs to protect the domestic sugar industry, turned around and bought the rights from a Japanese company for the process to make bio-diesel fuel.  He adapted it to make High Frucose Corn Syrup and convinced the soft drink industry to switch to it.  Even Original Coke is made with HFCS.

A major function of our digestive system is to convert carbohydrates to glucose to be turned into ATP in our mitochondria (by the way the mitochondria membrane is mostly made of choline).  Glucose is our only source of energy.  I recently switched to sugar during the day for energy (around 100 grams) and low carb meals (around 50 grams of carbs) in the evening.  The sugar supplies energy during the day and at night the low carb meals supply protein and fat for maintenance.  Of the energy drinks, Red Bull is the only one with sugar and the essential vitamins and minerals needed to process the sugar to ATP and has no exotic herbal medicines.

Try this for the constipation:  16 ounces of water, an ounce of Cherry Flavor Magnesium Citrate (290 mg of magnesium), some unsweetened tart cherry juice to taste, 500 mcg of Liquid Iodine, and scoop (3.5 grams) of Inulin.  With the added choline it finally sorted out my gut issues after 10 years GFD.

I also take high doses of B1, B2, B3, B5 and B12 several times a week and keep my vitamin D (25 OH vitamin D) at 80 ng/ml year round by taking 10,000 IU a day unless I get a lot of summer sun.

On 2/23/2024 at 4:16 AM, HWB said:

About 9 years ago I began to experience worse gut symptoms, extreme pain and vomiting.

That would be because gluten free food is not fortified with Folic Acid and you probably did not increase your folate from food, and as advised were avoiding too much liver, eggs and red meat in the cholesterol game, leading to a deficiency the choline needed for bile.

Edited February 26 by Wheatwacked

[Wheatwacked]

On 2/23/2024 at 4:16 AM, HWB said:

I still freely eat lots of ice cream whenever I wish

I drink 20 to 40 ounces of whole milk, often flavored with Nestle Quik Syrup(cocoa and sugar).  It is a mafor source of potassium for me.  DV for potassium is 4700 mg a day.  At 47 mg K per ounce milk is a good source of potassium. 

[HWB]

<<Try increasing your intake of choline.  Eggs, Beef, Liver or supplement.  You can get tested for homocysteine.  High homocysteine, greater than 19, causes inflammation.  It is considered an independent marker of cardiovascular inflammation.  Most doctors are unaware of choline and 90% of us don't eat even the minimun RDA.  The RDA is the equivalent of 4 eggs a day.  Avoiding eggs, liver and beef you need to eat 10 cups of brocolli or equivelent a day. Even this otherwise excellent artical on homocysteine neglects choline.>>

 

Who said I avoided eggs, liver or beef, I eat lots of those.  Unfortunately no amount of those has helped my gall stasis.

     <<Measurement of homocysteine: a historical perspective   "Elevated plasma level of homocysteine is being increasingly associated with many diseases, including cardiovascular diseases, stroke, Alzheimer’s disease, non-alcoholic fatty liver disease (NAFLD), macular degeneration, renal dysfunction, diabetes, bone fracture and cancer... Some clinical studies have also shown that the increased total plasma homocysteine level correlates better than cholesterol with the risk of cardiovascular disease."

      CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY  "Poor food choices over time use up our bile salts and lead to all kinds of digestive problems from acid reflux, gas, and bloating to constipation, irritable bowel syndrome, and diverticulitis. Choline is very effective in restoring GI tract health and improving digestion."

The sugar thing is the man who worked to raise tariffs to protect the domestic sugar industry, turned around and bought the rights from a Japanese company for the process to make bio-diesel fuel.  He adapted it to make High Frucose Corn Syrup and convinced the soft drink industry to switch to it.  Even Original Coke is made with HFCS.

A major function of our digestive system is to convert carbohydrates to glucose to be turned into ATP in our mitochondria (by the way the mitochondria membrane is mostly made of choline).  Glucose is our only source of energy.  I recently switched to sugar during the day for energy (around 100 grams) and low carb meals (around 50 grams of carbs) in the evening.  The sugar supplies energy during the day and at night the low carb meals supply protein and fat for maintenance.  Of the energy drinks, Red Bull is the only one with sugar and the essential vitamins and minerals needed to process the sugar to ATP and has no exotic herbal medicines.>>

 

agree personally about sugar, but not everyone can do sugar. I had lots of improvements across the board upping sugar intake. I should be sourcing fruit sugars but the healthier I eat, for me that means fruit, the more hard stool I stir up and so the cycle gets out of control. Looks like no one here can relate, so be it. I'll take it that this is not a common celiac symptom.

 

 

<<Try this for the constipation:  16 ounces of water, an ounce of Cherry Flavor Magnesium Citrate (290 mg of magnesium), some unsweetened tart cherry juice to taste, 500 mcg of Liquid Iodine, and scoop (3.5 grams) of Inulin.  With the added choline it finally sorted out my gut issues after 10 years GFD.

I also take high doses of B1, B2, B3, B5 and B12 several times a week and keep my vitamin D (25 OH vitamin D) at 80 ng/ml year round by taking 10,000 IU a day unless I get a lot of summer sun.>>

 

What I experience is not garden variety constipation. I could easily take laxatives like citrate, or various forms of magnesium, or senna, or whatevers. These usually cause pain by speeding up transit of painful matter through the gut. Fats help to some degree but my absorption is better and better and I don't like to overload any one thing. During pain <<episodes the last thing I want is anything acid. Never did well on any B vitamins other than foods.

  On 2/23/2024 at 9:16 AM, HWB said:
About 9 years ago I began to experience worse gut symptoms, extreme pain and vomiting.

That would be because gluten free food is not fortified with Folic Acid and you probably did not increase your folate from food, and as advised were avoiding too much liver, eggs and red meat in the cholesterol game, leading to a deficiency the choline needed for bile.>>

I've tried supplemental choline as well as high choline foods. I don't limit choline rich foods. I agree though there is some choline problem at some level due to gall symptoms.

Also had tried lecithin and phosphatidyl serine/choline, no lucks. raw yolks afaik are one of the best food sources for choline but these act as a probiotic for me and just stir up more trouble. 

 

[DanMc]

I know this is a slightly older post, but you mention a "chemical taste" when you come off gluten etc and sort out your gut flora....does this taste like rubber, by any chance? Because I have that when my diet is really super clean.

[HWB]

not rubber at all. very hard to describe a taste but it's more like metallic mixed with an element of when you're breathing in something strong like ammonia or mint, but there's no mint or ammonia taste just that sort of strong chemical sensation. i'm reasonably sure that part of it actually is metals being broken down and also a soup of toxic bacteria and god knows what else. Maybe H pylori creates some sulfide or other chemical gas that's added into the mix.

I did a consult with yet another expensive 'expert' doctor and it was yet another seeming waste of money. Advised to do ketogenic diet which is a non-starter for me.

The pain is slowly going away, less and less frequent but I still expect more painful episodes and vomiting.

Still expelling this plaque almost constantly even when eating gluten now - which i really shouldn't do.

I have a few ideas to try soon. One goes back to many years ago when I was doing liver cleansing protocol, part of which involved epsom salt. I had liquid bile expelled during the period when i was using epsom. Unfortunately epsom is too laxative and I couldn't be tied down like that. Was thinking perhaps just sulfate alone might help with bile solubility and concentrace minerals has a good amount of sulfate, so who knows.

 

 

[Wheatwacked]

Try whole milk yogurt.  I eat Stoneyfield vanilla.  Add fruit if you like. 

Cultured Pasteurized Organic Whole Milk, Pectin, Vitamin D3. Live Active Cultures
S. thermophilus, L. bulgaricus, Bifidobacterium BB-12®, L. acidophilus, L. paracasei and L. rhamnosus.

Looking at the NO Fat Greek Yogurt, consider that to give the mouth feel of real yogurt ahd Manufacterers of no fat yogurt add various processed ingrediant that many Celiacs have digestive issues with such as gums.  Consider it processed food.  Fat is an important factor in our appestat to tell us we've eaten enough.  Remove fat and we eat more.  Compared to whole milk yogurt Chobani no fat greek yogurt has a cardboard mouth feel.

Chobani no fat greek: Cultured Nonfat Milk, Cane Sugar, Black Cherries, Water, Fruit Pectin, Guar Gum, Natural Flavors, Cherry Juice Concentrate, Locust Bean Gum, Lemon Juice Concentrate. 6 Live and Active Cultures: S. Thermophilus, L. Bulgaricus, L. Acidophilus, Bifidus, L. Casei, and L. Rhamnosus

Funny that since recommending low fat diets in the 1970's the US population has gone from 15% to 50% obese.

[knitty kitty]

@HWB,

Have you been checked for SIBO?  Small Intestinal Bacterial Overgrowth will cause constipation and chemically breath.  

The best way to get rid of SIBO is to go on a ketogenic/Paleo diet, like the Autoimmune Protocol Diet.  It starves out the carbohydrate loving bacteria and allows good bacteria to repopulate the small intestine.  

The SIBO bacteria can communicate with the brain along the gut-brain axis, making you crave carbs, and in return, the SIBO bacteria can mess with your immune system by lowering inflammation and producing endorphins.  So, it's no wonder you feel better eating sugar.  

I took high dose (500-1000 mg/day) Benfotiamine (Thiamine) which promotes intestinal healing and helps keep bacterial in check.  Thiamine and Benfotiamine are safe and nontoxic even in high doses.  High doses (500-1000 mg) every day are required to get results.  The body responds differently to high doses. 

Got rid of my SIBO like this.  It was tough, but Celiac makes you stronger.