Horrible situation

[Ericaagl]

Hi all, 

I'm Erica. Nice to meet you. I wanted to share my story and my problem and see if any of you had suggestions about what to do.

I was diagnosed by biopsy in August 2021. I had had symptoms all my life, but I had no idea they were "symptoms" of anything; I just thought they were life. I've been in and out of hospitals for years for anorexia, which has been the medical industry's easy answer for my extreme, sudden, and rapid weight loss and failure to keep weight on when I gain it back. But I've never believed myself that I had anorexia, since I don't have any of the typical thought patterns ("I want to lose weight"; "I want to be thin"; "I don't like my body"; "I'm afraid of food"). In fact, I've always preferred high fat, high carb, high calorie foods. I've never tried to lose weight. My problem with weight -- and this is different from many celiacs -- is that I GAIN weight (a lot of it) from gluten, and LOSE weight (quickly and a lot of it) when I cut out gluten. So I'd be in pain (though in the past I didn't know it was pain I was feeling in my stomach; I just knew I didn't want to eat), and I'd be going to the bathroom constantly, so I'd eat less to make myself feel better. Well, the effect of eating less food was that I was eating less gluten, and as a result I'd immediately lose ridiculous amounts of weight, maybe 20 lbs in a week. So essentially, I've been misdiagnosed for almost thirty years. A clever doctor finally caught onto the truth after she'd been seeing me for six years and saw the pattern and got to know the real me -- something no other doctor or treatment center had ever made the effort to do. She caught a blood test showing positive for celiac's and then had me do an endoscopy, and that's how I found out I had celiac's. I was 39 at the time.

I immediately went gluten-free then, and it was like a miracle at first. I'd never known why it was so hard for me to read and why my brain was so foggy (even though I was finishing a PhD program -- I'd always pushed through the brain fog), but suddenly I could read a book a day and think clearly in a way I never knew was even possible. I had energy instead of weakness and fatigue, I could socialize, my stomach pain went away, I was no longer stuck in the bathroom all day with a combination of constipation and diarrhea, my temperature regulated better, my depression and anxiety lifted, I was no longer anemic, my insomnia resolved, my medications worked better because they were being absorbed, I stopped having seizures, and more. But after a few weeks, it seemed that I started becoming increasingly more sensitive to gluten and my symptoms started again. Before long, I was having more bad days than good days per week. I cut out more and more foods, and when I first cut something out, things would improve, but then it would be something else causing problems. My dietician and GI doctor, neither of whom were celiac specialists, made things worse. My dietician kept telling me I could eat anything labeled gluten free. Well, that was not true; I was reacting to the 20 or fewer ppm of gluten in packaged foods, and eventually just ignored her and started eating only natural foods. My GI doctor couldn't get it through her head how much of a problem gluten was for me and kept prescribing me laxatives that had gluten in them. Even my primary care doctor, the brilliant one who had discovered the celiac, wasn't well-trained in celiac and didn't (and still doesn't) understand how it's possible for me to GAIN weight from gluten; she still thinks you can only lose weight from it, so every time I'd gain weight (which was often because I was getting contaminated (or often cross-contaminated -- from products made on shared equipment in facilities that processed items with gluten), she'd think things were improving from a celiac standpoint.

I finally put down my foot with my terrible GI doctor, and two weeks ago she referred me to a celiac specialist in her practice. Yes, it took her all this time to refer me to a celiac specialist SHE WORKS WITH. I don't get it. He pointed out areas where I was still consuming manufactured products (butter) and got me in to see a celiac dietician who has the disease herself and normally only sees clients who work with GI doctors at a different university, where she's based. I meet with her in early Feb. My diet is extremely limited because I can only eat naturally gluten free foods, and yet I'm still getting sick from these things. Here is what I'm eating (there's NOTHING else; I've cut out all spices, even salt):

-brussels sprouts, broccoli, cauliflower

-avocados

-bananas, strawberries, pears

-eggs

-sweet potatoes

-regular potatoes

-water

I know regular potatoes and eggs have proteins that mimic gluten, so I'm wondering if those could be causing problems. I'm going to try eliminating them, but that leaves me with no sources of protein. I react to meat, cheese, fish, and beans because they come wrapped in packages or in bags and thus can be affected by trace contamination in the packaging process. So I really don't know how I'll get any protein. And in general, I'm very deprived and can't live on such little variety forever. But in the immediate term, what really concerns me is getting all the contamination out. I can't afford to keep getting sick because at this point when I get sick (which is most days), I'm completely debilitated, can't leave the bathroom, and am in severe pain. This is causing career problems for me, because I'm a teacher, and I've already had to have people cover my classes for me, and that can't happen again. So I NEED to figure out how to stay gluten-free (and free of anything else that might be causing me to react) before Monday, or I'm bound to lose my job. Can anybody help me? Thank you!

[ravenwoodglass]

Welcome Erica. I see you have gotten quite a few replies on your other thread from our other great and knowledgeable members.  One thing I didn't see mentioned was an evironmental aspect. You mention being a teacher. What ages are you teaching? Younger grades, in particular, may work with art supplies and glues that while non-toxic for them may be a problem for you. Little ones can also be real gluten spreaders after meals and snacks. Have you checked your toiletries for gluten? Some may have wheat or oats in them. Not as common now as when I was first diagnosed thankfully. Do you have a significant other that consumes gluten? If so they would need to brush their teeth before a kiss to be safe. 

Do make sure if you are on any meds that the pharmacist checks the gluten statis if that isn't being done aleady.

I do hope you find what is giving you issues and but you shouldn't worry about contamination with FRESH packaged meats. If it make syou more comfortable rinse them before cooking.

One last thing, sometimes when we are diagnosed celiac a doctor will see any symptom as being caused by celiac. Make sure they are ruling out other possible medical issues as well if this contines.

Hope you are feeling better soon.

[Ericaagl]

Thank you SO much for replying to this! It really hurt my feelings that it got so many views yet no one replied.

It's great to know that fresh meat is safe, especially if I wash it. Thanks for explaining that. My primary doctor has had me tested for a million other things, so don't worry about them over-focusing on celiac. The only thing I've tested positive for, though, is the celiac. All my toiletries are gluten free, and I research all my medications and have my pharmacy order only manufacturers that make them gluten free. It took me awhile to learn to do that. I live alone and am single, so I don't have to worry about someone else infecting me. As for my job, I teach undergrads, and there are no supplies involved or any food or drink in the classroom. I'm thinking that the problem is that the eggs and potatoes I'm eating have proteins that mimic gluten, so I'm going to try cutting those out.

[Wheatwacked]

Hi Erica, I'm glad you have your diagnosis, now you can move forward and get even better than you were. Thoughout both threads I don't see any mention of vitamins or a nutrient dense diet.  Celiac Disease is a disease of malabsorbtion. Here's what the Merck Manual says: "Celiac disease is an immunologically mediated disease in genetically susceptible people caused by intolerance to gluten, resulting in mucosal inflammation and villous atrophy, which causes malabsorption...   Treatment of celiac disease is a gluten-free diet ..Supplementary vitamins, minerals, and hematinics may be given, depending on the deficiencies. ". 

You've already seen the benifit of removing the toxic gluten.  Now your gut has to heal. Now that the opiod effect has worn off you will notice things will bother you. You will have to repopulate your gut with good bacteria that thrive on soluable fiber instead of the bad the love sugary carbs. Our modern wheat has proteins in it the turns on fat storage mode. Once that is turned off your body will self adjust to your optimum weight. 

Dr Haas in 1920 succesfully treated children. I followed his diet for a while recently and felt great improvent. You are mostly doing it already, you can add 4% cottage cheese. THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D.

Homemade dill pickles and saurkraut (salt fermented not commercial quick pickled with vinegar) is full of lactobaccilus which produces the lactose we need for milk as adults.

Inulin is a good fiber source. Vitamin D will improve mood, give hope and modulate your immune response. Vitamin B1 deficiency can cause all sorts of neurapathies, Choline helps to digest fat and not enough can cause gall bladder issues or even fatty liver disease, low iodine can cause thyroid problems, cretanism in children.

Quote

 

What are the symptoms of thiamine deficiency?

Early symptoms of thiamin deficiency are vague. They include fatigue, irritability, poor memory, loss of appetite, sleep disturbances, abdominal discomfort, and weight loss. Eventually, a severe thiamin deficiency (beriberi) may develop, characterized by nerve, heart, and brain abnormalities. https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

 

 

[Ericaagl]

Hi there,

Thank you so much for this very helpful information. I'd like to go on Vitamin D, B1 and Thiamin supplements, but I have before, and even though they were labeled gluten free, I had serious gluten reactions to them. Like I've mentioned, I react to the barest traces of gluten, so the <20ppm line doesn't work for me. As soon as I went off them, my symptoms cleared up. How would you suggest I get supplementation if even "gluten free" formulas have small amounts of gluten that make me sick?

[Megawisdumb]

I ran across this lab (https://www.enterolab.com/StaticPages/TestInfo.aspx) from this site that helped me understand what foods were causing issues for me.  Granted it was an extensive list but potato and eggs were on my list.  My test result listed them in reactivity order so I at least know which one is less reactive compared to other grains or meats. 

[knitty kitty]

@Ericaagl,

Hello.  I'm sorry you're having difficulties.  

Your symptoms are similar to what I experienced with Thiamine deficiency.  In Thiamine deficiency, anorexia and loss of appetite are common.  I know I would lose my appetite.  If I ate carbohydrates, I gained lots of weight quickly.  If I did not eat gluten and carbohydrates, I would lose weight very quickly.  

In Thiamine deficiency, the body changes from burning carbohydrates for fuel to burning fats.  Without sufficient thiamine, the body tries to save what little thiamine is available by turning carbohydrates into fats that are stored, resulting in quick weight gain.  Thiamine cannot be stored for long.  Thiamine stores can be depleted in as little as a week.  

While consuming gluten you would gain weight.  Thiamine deficiency makes the body store carbs as fat.  This stored fat is burned for fuel because it requires less thiamine to turn fats into energy, resulting in rapid weight loss.  

So, while eating gluten, you gain weight (carb storage due to thiamine deficiency) and within a week of cutting out gluten (the time your thiamine stores ran out), weight loss results as your body burns off the fat.  

Processed Gluten free facsimile foods are not required to be enriched with vitamins like thiamine.  So eating processed gluten free facsimile foods would make thiamine insufficiency/deficiency worse. 

In fact, Thiamine deficiency can actually worsen gastrointestinal symptoms (Gastrointestinal Beriberi).  Our gastrointestinal tract has a limited vocabulary.  So those worsening symptoms off of gluten, where you think you're reacting to some gluten contamination, is actually your gastrointestinal tract telling you it cannot handle high carbohydrate loads even if it is gluten free because there's not sufficient thiamine to process it.  There's not sufficient Thiamine to make the gastrointestinal tract function properly.  Digestion is affected.  Thiamine is necessary to make digestive enzymes, insulin, and to squish stuff through the intestines.  Alternating diarrhea and constipation (or any combination) is symptomatic of Thiamine deficiency.  

Gastrointestinal Beriberi is under-recognized by the medical community.  There are tests for thiamine deficiency, but blood levels are not an accurate measurement of depleted thiamine stores within the body tissues and organs.  

The World Health Organization (WHO) says that thiamine deficiency can be diagnosed if improvement is seen with administration of 500 mg or more of Thiamine Hydrochloride per day over several days.  

Thiamine is safe and nontoxic even in high doses.  Doctors can provide an IV of Thiamine Hydrochloride.  Since Thiamine is safe and nontoxic, receiving high dose Thiamine would not be detrimental.  

I had improvement within minutes of receiving high dose Thiamine.  Nutritional factors for disease are overlooked or ignored by medical professionals taught to prescribe pharmaceuticals to cover symptoms.  If we give our bodies the essential vitamins and minerals our bodies cannot live without, our bodies can function properly and heal.  

Every single cell in our bodies need thiamine.  Thiamine is used by mitochondria inside cells to produce energy.  Some cells have hundreds of mitochondria.  Without sufficient thiamine, the mitochondria cannot make energy.  Without sufficient energy, the cell cannot do whatever it is supposed to do.    Mitochondrial dysfunction is now recognized as a cause of disease.  Mitochondria need Thiamine!  

High dose Thiamine and following the Autoimmune Protocol Diet has helped me.  

Please discuss this with your doctor.  I'm not diagnosing.  This is what I learned from personal experience and research as a microbiologist.

Hope this helps!

Edited January 24, 2023 by knitty kitty
Typo correction

[Ericaagl]

OMG, you have no idea how helpful this is, knitty kitty! I'm messaging my doctor right now. I want IV thiamin!

[Wheatwacked]

On 1/23/2023 at 12:33 PM, Ericaagl said:

Vitamin D, B1 and Thiamin supplements, but I have before, and even though they were labeled gluten free, I had serious gluten reactions

What kind of vitamins were they? In a multivitamin or separates, or a targeted supplement?

I get most of my vitamins from PipingRock.com, best prices I find and professional. $15 for 250 capsules of 10,000 IU of vitamin D. Cheaper than a psychiatrist visit.  It begins to work in days.

At the beginning of summer (first day of hurricane season) I started taking these; by the end of summer I had lost 15 pounds, all of it belly fat. 9% of my body weight. These are the main vitamins needed for turning carbs and fats into energy.

• 10,000 IU Vitamin D3 - autoimmune, mental health, bones, growth
• 500 mg Thiamine (B1) - carb and fat digestion. neurapathies.
• 500 mg Nicotinic Acid (B3) - The flush is not a health concern. It is the increased blood flow through capillaries including those in belly fat. Once your levels are optimum (a few days) the annoying itch and flush goes away. *
• 500 mg Pantothenic Acid (B5) - Need for the final step to make ATP (cellular energy) from glucose in the mitochondria.
• 840 mg Phosphotidyl Choline - fat digestion. Deficiency can cause gall bladder symtoms, fatty stools, non-alcoholic fatty liver, poor nerve transmission/brain fog (acetylcholine).
• 1000 mcg B12

Start them one a time, see how you respond and then add the next. There is no maximum amount you can take of the B vitamins except folic acid (synthetic B9) but food sourced folate (B9) more is better. Choline limit is 3500 mg. 840 mg phosphotidyl choline has about 500 mg of choline.

Think of these more appropriately as pill form of food, not as supplements. They are nutrients we require to survive and cannot live without; not exotic plants to enhance.

You will not get this advice from doctors. They do not work in nutrition and get minimal education in it. They work in naming diseases and prescribing according accepted protocols, regardless your nutrional status.

* B3 Nicotinamide  "Studies conducted since the late 1950s show that these doses can increase high-density lipoprotein (HDL; “good”) cholesterol levels by 10-30% and reduce low-density lipoprotein (LDL; “bad”) cholesterol levels by 10-25%, triglyceride levels by 20-50%, and lipoprotein(a) levels by 10-30%...  Thirty to 50 mg nicotinic acid or more typically causes flushing; the skin on the patient’s face, arms, and chest turns a reddish color because of vasodilation of small subcutaneous blood vessels. The flushing is accompanied by burning, tingling, and itching sensations [2,12,36]. These signs and symptoms are typically transient and can occur within 30 minutes of intake or over days or weeks with repeated dosing; they are considered an unpleasant, rather than a toxic, side effect. However, the flushing can be accompanied by more serious signs and symptoms, such as headache, rash, dizziness, and/or a decrease in blood pressure. Supplement users can reduce the flushing effects by taking nicotinic acid supplements with food, slowly increasing the dose over time, or simply waiting for the body to develop a natural tolerance." NIH Niacin Fact Sheet for Consumers

Start them one a time, see how you respond and then add the next.

 

On 1/22/2023 at 8:34 AM, Ericaagl said:

never believed myself that I had anorexia, since I don't have any of the typical thought patterns ("I want to lose weight"; "I want to be thin"; "I don't like my body"; "I'm afraid of food").

On 1/22/2023 at 8:34 AM, Ericaagl said:

things would improve, but then it would be something else causing problems.

I call it my anorexic tendencies, I was always skinny.To be honest much of the time I feel better when I don't eat. Eventually I realized that the psychiatric excuses for not eating are simply machinizations that my body does to make me not eat something. Trouble is I did not  know what it was not to eat. For each reason I would resolved, a different one would pop up. What I am saying is that your anorexia is psyically driven not your psyche controlling your gut but the other way around.  I had the same experience with alcoholism for 30 years. Each time I would resolve a specific "I drink because..." a new one popped up. I did finally find the root cause: GLUTEN. Within a week of GFD I no longer had any desire to drink. Dr Amen, psychiatrist, has a phrase: Fix your body, fix your brain. I am not saying psychiatric issues are not real or can be ignored but once you get your malnutrition fixed the problems will get fixed with appropriate treatment as will a good number of psysical ailments.

[knitty kitty]

@Ericaagl,

Do look into the Autoimmune Protocol Diet...

Choose low histamine foods from the allowed foods.  Bone broth and fermented foods are high histamine foods, so I skipped those.  Histamine naturally occurs in food.  Our bodies make histamine as part of the inflammation process of Celiac Disease.  We want to eat low histamine foods to keep our histamine levels down.  Our bodies clear histamine with Vitamin C, Vitamin B 12,  Pyridoxine (Vitamin B6), copper, and Diamine Oxidase, an enzyme our bodies make available as a supplement).  

Hope this helps!

[Ericaagl]

I’m definitely going to try that diet. The thing is, I’m mostly following it right now (except that I’m eating avocados and bananas and I can’t tell from the description posted here if those are high in histamines. Since I’ve gotten out everything with gluten and foods that mimic gluten, the timeline of my symptoms has changed somewhat but they’re just as bad. When I was getting gluten, even teeny bits, the diarrhea/constipation was delayed and didn’t start for twelve hours after I eat. Now I start needing to use the bathroom and having terrible stomach pain the minute I finish eating. It lasts throughout the night and I get no sleep and continues until 2pm the next day. I can’t eat until it end. Then I do and it all starts again. I’m eating very little, only sweet potatoes, fruit, Brussels sprouts, and avocado. Yet this is still happening. What can I do? If something I’m eating is causing it, how can I cut out still more without starving to death? If I add meat, will that help? It doesn’t seem like I’m doing anything different from what’s listed in the AIP except that I’m not eating meat?

[Ericaagl]

Wheatwhacked: they were targeted supplements, not part of multivitamins. I’ll try the company you recommended. Thank you!

and I don’t think I have separate psychiatric problems that aren’t tied to the celiac. All my mood problems are related to my physical issues. 

[Ericaagl]

Could it be possible that since I also have gastroperesis, the problem is just that it hasn’t been long enough since I’ve been 100% gluten free and my body is still flushing out gluten from my system? In all my tests my abdomen has been full of food so there’s probably still gluten and other bad stuff stuck in there. Could this be temporary? Also, if I get rid of bananas and avocados where am I supposed to get any calories? I’m supposed to be gaining weight right now. 

[Scott Adams]

Celiac disease gut damage can take months or longer to heal, depending on how bad it is, so this could definitely be a factor depending on how long you've been gluten-free. Also, is your diet 100% gluten-free? If you are still getting trace amounts of gluten this can also prolong recovery.

[knitty kitty]

@Ericaagl,

I've been in the situation where seemingly everything caused some sort of reaction.  

I followed the Autoimmune Protocol Diet.  I ate small grass fed ground beef patties and a steamed vegetable like carrots, okra, or green beans.  I ate very small portions, every two to three hours if hungry.  

I did not eat sweet potatoes because sweet potatoes contain an enzyme (thiaminase) that breaks down Thiamine in the body, making thiamine unusable.  

I did not eat fruits.  Many fruits contain high levels of histamine.  The more ripe a fruit is, the more histamine it contains.  Bananas that are closer to being green have less histamine than a fully ripened banana with black spots on the peel.  

(Bananas available today are a different strain of banana than was available when a banana diet was recommended by doctors for Celiac Disease.  The Banana Blight, a black mold, killed off all the banana trees that produced the bananas I grew up with.  The bananas available now have more fructose.)

Some fruits just naturally contain high histamine levels.  Strawberries, avocado, and citrus fruits like oranges, grapefruit and lemons have high histamine levels.  

I also had Fructose Malabsorption Syndrome.  Our bodies can only digest small amounts of fructose at a time.  The remaining undigested fructose in our intestines can cause irritation, gas and bloating.

Additionally, some bacteria and yeasts in our digestive tract can ferment fructose, the naturally occurring sugar found in fruits, changing fructose into alcohol that we can absorb through the intestines.  This is called Auto-Brewery Syndrome.  It's basically getting drunk off of undigested fructose which is fermented in the intestines and turned into alcohol.  (No wonder my doctors kept asking if I drank alcohol and thought I was lying.  Heavy sigh.)

https://pubmed.ncbi.nlm.nih.gov/30020718/

I chose not to eat anything with High Fructose Corn Syrup (HFCS).  (Many gluten free facsimile foods use HFCS as a sweetener.)  HFCS is also capable of being fermented in the intestines.

I was able to tolerate fresh dates.  Dates are low in histamine and low in fructose, plus they have water soluble fiber which is great for the digestive tract.  

In Histamine Intolerance, the body can't keep up with clearing the amount of histamine our bodies make as part of the inflammation process.  Additional histamine from high histamine foods we eat only compounds the matter.   I get the visual image of Lucy and Ethyl in the chocolate factory...

https://m.youtube.com/watch?v=AnHiAWlrYQc

By lowering the amount of high histamine foods we eat, we are helping our bodies cope.  We also can help our bodies cope by taking vitamins (thiamine B1,  Vitamin C, Pyridoxine B6, Cobalamine B12, copper and zinc) which make an enzyme called Diamine Oxidase (DAO).  Supplements of DAO made from pork kidneys is available over the counter.  

High dose Thiamine, a B Complex, Vitamin C, magnesium and Vitamin D will help regulate your immune response and lower your histamine levels.  

Potatoes are a nightshade, as are tomatoes, peppers, and eggplant.  They contain glycoalkaloids which promote leaky gut syndrome.  In leaky gut syndrome, the glycoalkaloids make the cells of the intestines move away from each other, leaving gaps between cells through which food molecules can get into the bloodstream which increases inflammation.  Cutting out potatoes and other nightshades is beneficial.  

Gastroparesis is a symptom of Gastrointestinal Beriberi, Thiamine deficiency in the intestinal tract.  I have had gastroparesis because I'm diabetic.  About ninety percent of Diabetics (both types) are deficient in thiamine.  If you are prediabetic, you would want to change your diet and supplement with Thiamine.  

It's very doubtful you've still got gluten in your intestinal tract.  It would have been expelled  with poop.  The autoimmune reaction, the level of anti-gluten antibodies  can take a few weeks to months to calm down.  

The AIP diet helps calm the inflammation.  Healthy fats and proteins is where your calories should come from.  Avocado oil, Extra Virgin Olive Oil, coconut oil, flaxseed oil and Omega Threes.  

We want to eat meats because we need protein and fats to build muscle.  Our bodies like to burn carbohydrates for fuel, but not for building muscle.  Our bodies can burn fats and proteins for fuel.  Thiamine is essential in turning proteins, fats, and carbohydrates into energy.  

Hope you feel better!  Keep us posted on your progress.

[Wheatwacked]

This may explain some of your issues.

Typical store-bought grain-fed beef has an Omega-6 to 3 ratio of 20:1. Grass-fed beef has a ratio closer to 3:1, well within the 4:1 guidelines of a standard healthy diet.

Commercial dairy has a ratio of 5:1; Organic dairy 3:1; and 100% grass fed 1:1.

So at least while you are healing try to stick to grass fed.

There are some vitamins that are difficult to get enough of if you don't eat meat and dairy. 

For the minimum daily Choline you have to eat 10 cups of cooked brocolli or 4 eggs.

  THE NUTRIENTS YOU NEED WITH A TASTE YOU LOVE  Essential Nutrients in beef.

   Top 12 Foods That Are High in Vitamin B12  Vitamin B12 is mainly found in animal products, especially meat and dairy products. However, for those eating vegan diets, fortified foods can be good sources of this vitamin. The foods containing vitamin B12 are primarily animal meat, fish, eggs, and dairy. Vegetarians, people who are pregnant or nursing, and others who are at risk of deficiency may need to take supplements.

[Ericaagl]

8 hours ago, Wheatwacked said:

This may explain some of your issues.

Typical store-bought grain-fed beef has an Omega-6 to 3 ratio of 20:1. Grass-fed beef has a ratio closer to 3:1, well within the 4:1 guidelines of a standard healthy diet.

Commercial dairy has a ratio of 5:1; Organic dairy 3:1; and 100% grass fed 1:1.

So at least while you are healing try to stick to grass fed.

There are some vitamins that are difficult to get enough of if you don't eat meat and dairy. 

For the minimum daily Choline you have to eat 10 cups of cooked brocolli or 4 eggs.

  THE NUTRIENTS YOU NEED WITH A TASTE YOU LOVE  Essential Nutrients in beef.

   Top 12 Foods That Are High in Vitamin B12  Vitamin B12 is mainly found in animal products, especially meat and dairy products. However, for those eating vegan diets, fortified foods can be good sources of this vitamin. The foods containing vitamin B12 are primarily animal meat, fish, eggs, and dairy. Vegetarians, people who are pregnant or nursing, and others who are at risk of deficiency may need to take supplements.

I haven't bought any beef yet, but I've definitely been planning on getting grass-fed only! I'm going to the store today.

[Ericaagl]

9 hours ago, knitty kitty said:

@Ericaagl,

I've been in the situation where seemingly everything caused some sort of reaction.  

I followed the Autoimmune Protocol Diet.  I ate small grass fed ground beef patties and a steamed vegetable like carrots, okra, or green beans.  I ate very small portions, every two to three hours if hungry.  

I did not eat sweet potatoes because sweet potatoes contain an enzyme (thiaminase) that breaks down Thiamine in the body, making thiamine unusable.  

I did not eat fruits.  Many fruits contain high levels of histamine.  The more ripe a fruit is, the more histamine it contains.  Bananas that are closer to being green have less histamine than a fully ripened banana with black spots on the peel.  

(Bananas available today are a different strain of banana than was available when a banana diet was recommended by doctors for Celiac Disease.  The Banana Blight, a black mold, killed off all the banana trees that produced the bananas I grew up with.  The bananas available now have more fructose.)

Some fruits just naturally contain high histamine levels.  Strawberries, avocado, and citrus fruits like oranges, grapefruit and lemons have high histamine levels.  

I also had Fructose Malabsorption Syndrome.  Our bodies can only digest small amounts of fructose at a time.  The remaining undigested fructose in our intestines can cause irritation, gas and bloating.

Additionally, some bacteria and yeasts in our digestive tract can ferment fructose, the naturally occurring sugar found in fruits, changing fructose into alcohol that we can absorb through the intestines.  This is called Auto-Brewery Syndrome.  It's basically getting drunk off of undigested fructose which is fermented in the intestines and turned into alcohol.  (No wonder my doctors kept asking if I drank alcohol and thought I was lying.  Heavy sigh.)

https://pubmed.ncbi.nlm.nih.gov/30020718/

I chose not to eat anything with High Fructose Corn Syrup (HFCS).  (Many gluten free facsimile foods use HFCS as a sweetener.)  HFCS is also capable of being fermented in the intestines.

I was able to tolerate fresh dates.  Dates are low in histamine and low in fructose, plus they have water soluble fiber which is great for the digestive tract.  

In Histamine Intolerance, the body can't keep up with clearing the amount of histamine our bodies make as part of the inflammation process.  Additional histamine from high histamine foods we eat only compounds the matter.   I get the visual image of Lucy and Ethyl in the chocolate factory...

https://m.youtube.com/watch?v=AnHiAWlrYQc

By lowering the amount of high histamine foods we eat, we are helping our bodies cope.  We also can help our bodies cope by taking vitamins (thiamine B1,  Vitamin C, Pyridoxine B6, Cobalamine B12, copper and zinc) which make an enzyme called Diamine Oxidase (DAO).  Supplements of DAO made from pork kidneys is available over the counter.  

High dose Thiamine, a B Complex, Vitamin C, magnesium and Vitamin D will help regulate your immune response and lower your histamine levels.  

Potatoes are a nightshade, as are tomatoes, peppers, and eggplant.  They contain glycoalkaloids which promote leaky gut syndrome.  In leaky gut syndrome, the glycoalkaloids make the cells of the intestines move away from each other, leaving gaps between cells through which food molecules can get into the bloodstream which increases inflammation.  Cutting out potatoes and other nightshades is beneficial.  

Gastroparesis is a symptom of Gastrointestinal Beriberi, Thiamine deficiency in the intestinal tract.  I have had gastroparesis because I'm diabetic.  About ninety percent of Diabetics (both types) are deficient in thiamine.  If you are prediabetic, you would want to change your diet and supplement with Thiamine.  

It's very doubtful you've still got gluten in your intestinal tract.  It would have been expelled  with poop.  The autoimmune reaction, the level of anti-gluten antibodies  can take a few weeks to months to calm down.  

The AIP diet helps calm the inflammation.  Healthy fats and proteins is where your calories should come from.  Avocado oil, Extra Virgin Olive Oil, coconut oil, flaxseed oil and Omega Threes.  

We want to eat meats because we need protein and fats to build muscle.  Our bodies like to burn carbohydrates for fuel, but not for building muscle.  Our bodies can burn fats and proteins for fuel.  Thiamine is essential in turning proteins, fats, and carbohydrates into energy.  

Hope you feel better!  Keep us posted on your progress.

I cut out avocados and bananas yesterday, and this was the first night in forever that I didn't have diarrhea. So I'm wondering if the problem was the histamines? On the other hand, I tripled the number of sweet potatoes and Brussels sprouts I ate, since I needed to make up the calories. I ate sweet potatoes, Brussels sprouts, pear, strawberries. I'm going to the store today to get grass-fed beef. Are you sure fruit and sweet potatoes are such a problem? I've hardly ever had such a peaceful night, and I ate a lot of them yesterday. I'm really underweight and wouldn't be able gain weight on just beef and the vegetables you name. I really need something starchy like sweet potatoes. I have gluten reactions to all oils, because they come bottled and thus can get contaminated in the manufacturing process (according to my celiac dr).

So can I eat non-ripe bananas?

[Ericaagl]

I am having really bad brain fog, though. Could that be caused by the sweet potatoes? It's worse than when I have gluten.

[Wheatwacked]

That is good news. Finding what you can eat is going to be trial and error. That is the reason for taking vitamins. To ensure your body has the tools to utilize the carbs and fats and proteins. For a weird example,  I fasted 36 hours, wasn't hungry so I didn't eat, (black iced coffee only) my blood sugar goes up (500 mg Thiamine HCL daily). Next day I ate a 10 oz box of Lucky Charms and coffee through the day and my morning blood sugar the next morning went down to 121. Next day I ate bacon and eggs and coffee, morning glucose went up to 224. My fasting blood sugar from the lab test was 177 end of November. Things like neurapathy, cataracts, vision, hearing problems, which are supposed to be caused by high glucose are continuing to improve. And my belly fat is disolving but weight holding steady at 21.2 BMI. My peak BMI in 2014 was 23.8. Glucose went up when started on glipizide and again when changed to metformin. Work in progress.

Edited January 26, 2023 by Wheatwacked

[Ericaagl]

Definitely a work in progress. So glad not to be having diarrhea anymore. I'm guessing it was the avocado. I ordered all the vitamins from PipingRock. My doctor seems skeptical about Thiamine; she says she's not convinced that that's a problem. She wants me to ask my GI doctor what he thinks. He's hard to get in touch with, though. Argh!

My issue with respect to blood sugar is that it drops too easily. Usually when I have seizures they find my sugar in the 40s. So I have to be careful about that.

[Wheatwacked]

7 hours ago, Ericaagl said:

My doctor seems skeptical

"The Truth Is Out There." - Mulder

[LP023]

On 1/22/2023 at 7:34 AM, Ericaagl said:

Hi all, 

I'm Erica. Nice to meet you. I wanted to share my story and my problem and see if any of you had suggestions about what to do.

I was diagnosed by biopsy in August 2021. I had had symptoms all my life, but I had no idea they were "symptoms" of anything; I just thought they were life. I've been in and out of hospitals for years for anorexia, which has been the medical industry's easy answer for my extreme, sudden, and rapid weight loss and failure to keep weight on when I gain it back. But I've never believed myself that I had anorexia, since I don't have any of the typical thought patterns ("I want to lose weight"; "I want to be thin"; "I don't like my body"; "I'm afraid of food"). In fact, I've always preferred high fat, high carb, high calorie foods. I've never tried to lose weight. My problem with weight -- and this is different from many celiacs -- is that I GAIN weight (a lot of it) from gluten, and LOSE weight (quickly and a lot of it) when I cut out gluten. So I'd be in pain (though in the past I didn't know it was pain I was feeling in my stomach; I just knew I didn't want to eat), and I'd be going to the bathroom constantly, so I'd eat less to make myself feel better. Well, the effect of eating less food was that I was eating less gluten, and as a result I'd immediately lose ridiculous amounts of weight, maybe 20 lbs in a week. So essentially, I've been misdiagnosed for almost thirty years. A clever doctor finally caught onto the truth after she'd been seeing me for six years and saw the pattern and got to know the real me -- something no other doctor or treatment center had ever made the effort to do. She caught a blood test showing positive for celiac's and then had me do an endoscopy, and that's how I found out I had celiac's. I was 39 at the time.

I immediately went gluten-free then, and it was like a miracle at first. I'd never known why it was so hard for me to read and why my brain was so foggy (even though I was finishing a PhD program -- I'd always pushed through the brain fog), but suddenly I could read a book a day and think clearly in a way I never knew was even possible. I had energy instead of weakness and fatigue, I could socialize, my stomach pain went away, I was no longer stuck in the bathroom all day with a combination of constipation and diarrhea, my temperature regulated better, my depression and anxiety lifted, I was no longer anemic, my insomnia resolved, my medications worked better because they were being absorbed, I stopped having seizures, and more. But after a few weeks, it seemed that I started becoming increasingly more sensitive to gluten and my symptoms started again. Before long, I was having more bad days than good days per week. I cut out more and more foods, and when I first cut something out, things would improve, but then it would be something else causing problems. My dietician and GI doctor, neither of whom were celiac specialists, made things worse. My dietician kept telling me I could eat anything labeled gluten free. Well, that was not true; I was reacting to the 20 or fewer ppm of gluten in packaged foods, and eventually just ignored her and started eating only natural foods. My GI doctor couldn't get it through her head how much of a problem gluten was for me and kept prescribing me laxatives that had gluten in them. Even my primary care doctor, the brilliant one who had discovered the celiac, wasn't well-trained in celiac and didn't (and still doesn't) understand how it's possible for me to GAIN weight from gluten; she still thinks you can only lose weight from it, so every time I'd gain weight (which was often because I was getting contaminated (or often cross-contaminated -- from products made on shared equipment in facilities that processed items with gluten), she'd think things were improving from a celiac standpoint.

I finally put down my foot with my terrible GI doctor, and two weeks ago she referred me to a celiac specialist in her practice. Yes, it took her all this time to refer me to a celiac specialist SHE WORKS WITH. I don't get it. He pointed out areas where I was still consuming manufactured products (butter) and got me in to see a celiac dietician who has the disease herself and normally only sees clients who work with GI doctors at a different university, where she's based. I meet with her in early Feb. My diet is extremely limited because I can only eat naturally gluten free foods, and yet I'm still getting sick from these things. Here is what I'm eating (there's NOTHING else; I've cut out all spices, even salt):

-brussels sprouts, broccoli, cauliflower

-avocados

-bananas, strawberries, pears

-eggs

-sweet potatoes

-regular potatoes

-water

I know regular potatoes and eggs have proteins that mimic gluten, so I'm wondering if those could be causing problems. I'm going to try eliminating them, but that leaves me with no sources of protein. I react to meat, cheese, fish, and beans because they come wrapped in packages or in bags and thus can be affected by trace contamination in the packaging process. So I really don't know how I'll get any protein. And in general, I'm very deprived and can't live on such little variety forever. But in the immediate term, what really concerns me is getting all the contamination out. I can't afford to keep getting sick because at this point when I get sick (which is most days), I'm completely debilitated, can't leave the bathroom, and am in severe pain. This is causing career problems for me, because I'm a teacher, and I've already had to have people cover my classes for me, and that can't happen again. So I NEED to figure out how to stay gluten-free (and free of anything else that might be causing me to react) before Monday, or I'm bound to lose my job. Can anybody help me? Thank you!

Look into mast cell. My mom has it and she was diagnosed with celiacs, crohns, colitis, ibs and told she may have stomach cancer but nothing ever turned up on tests that I’m aware of. 15 years later she went to the Mayo Clinic and was diagnosed with mast cell. She has to have all meat fresh, organic and can’t let any food get above a certain temp and can’t eat leftovers. A lot of fruits and veggies  are out for her. Crazy thing is tap water sets her off but bottled water doesn’t. She takes an antihistamine every morning and every night. 15 years and over 100 lbs later she’s doing better. 

[Ericaagl]

Hey all.

I wanted to update you. Things have gone from bad to worse. I’m down to eating only plain fresh chicken, sweet potatoes, and berries … and even so, I’m sick every single day. The symptoms just won’t let up. I haven’t been able to fulfill my teaching duties because I can’t leave the bathroom. And they’re exactly the same as my gluten symptoms, so I don’t think they are caused by a different condition. At least, I don’t think so. I mean, would another condition cause the EXACT same symptoms as my celiac? Also, despite how little I’m eating and despite being completely gluten-free (there can’t possibly be any gluten in the three items I’m eating, right?), I’m gaining loads of weight rapidly. I’ve gone up four sizes in three weeks. The one thing I should add that could be complicating matters is that for about three weeks I was eating ground beef before I switched to chicken. The ground beef was causing my system to ground to a halt by aggravating my gastroperesis. During that time I had several gluten exposures (I ate some different things that were processed), but because of the delayed gastric emptying, the gluten never came out (as it usually does in the form of diarrhea) and I just got severe pain that never went away. It was during this period that the weight started piling on. I finally switched over to chicken about five or six days ago, and at that point things started moving a bit, and I started having diarrhea again, but it’s still mixed with a lot of constipation and is very hard to pass. And the weight gain is continuing. I still have gluten symptoms every single day. It seems like my system is still very backed up and maybe I haven’t flushed out all the gluten yet? And that I still haven’t recovered from the damage the red meat did? Are those possibilities to explain what’s going on? I’m terrified that this is never going to end and I’ll never find a solution. I’ve been taking all the vitamins but they haven’t made a difference. Is it possible that my body can’t handle any food at all and I have to stop eating? I want to do that but I just get so hungry. Could I have refractory celiac disease? Or could all this still be backup and it’s more likely that things will eventually return to normal but it might take time because my system takes so long to process everything? What should I do? Thanks for any advice you might have. 

[LP023]

My mom went 12 years being diagnosed with celiacs, crohns, ulcerative colitis, ibs. She went to the Mayo Clinic and found out she had mast cell. After a diet for that she is much better.