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Hi Corrine

My sister has suggested the following she is not a dr just works alot with patient files. Also her boyfriend who also has lyme and some stomach issues made some input..I'll just paste the following for your consideration 

Could be multiple things going on with definite celiac plus an autoimmune component, likely from a chronic infection, maybe not Lyme, but who knows. J. suggests maybe trying Betaine HCL and sodium butyrate (both products only from BodyBio). It will assist her gastric acid production and the breakdown of food. Could be that her digestive juices aren't working properly. Try small bottles. Then see if she can tolerate NOW brand super enzymes. Do the other two first though. Then try a multistrain sugar-free probiotic. By adjusting the stomach acid first, hopefully she should be able to tolerate the others. He says with the first she should see results within a week or so.

Here is the BodyBio website. 

https://bodybio.com/blogs/blog/what-on-earth-is-butyrate

For additional info. 

https://m.professionalsupplementcenter.com/Betaine-HCl-by-E-Lyte-BodyBio.htm

More info

https://bodybio.com/products/betaine-hcl

Hope you find some of this helpful 

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Many thanks for all this, Sue, and please extend my thanks to your relatives.

The thing is that I have already tried these supplements except sodium butyrate and reacted really badly. They were other brands, as I live in France. The Betaine HCL was NOW brand. I may give them another go in case anything has changed. But I would definitely not start with digestive enzymes or probiotics, those really bring back bad memories. For sodium butyrate I worry about the MCT, as it must be extracted from some vegetable oil and I react to minute quantities.

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Another update to this post for whoever has the patience or curiosity to read it or finds themselves in a similar situation.

As of March, I cannot eat fish anymore. Through February, I tried eating smaller and smaller quantities, but I kept getting worse and worse from ridiculous amounts, so I just gave it up a short while ago. I currently eat only beef. I no longer tolerate vitamins with fillers. I only take vit. C, calcium citrate and potassium citrate in powder form with no fillers. By end February I had also stopped tolerating Entocort, I suppose because of the fillers too (a lot more and nastier than in my vitamins), so I had to stop it - I was on the minimal dose anyway. I have a prescription for hydrocortisone, but have no intention of trying it, considering the current situation.

My doctors and the university hospital they work at are very involved in the research for a vaccine and/or treatment for COVID-19. As such, they have been impossible to get a hold of, nor can I expect the results of the specialised tests they were planning on my duodenal biopsies anytime soon. So the only plan of action I have left is to just keep eating beef and hope that my immune system tolerates it in the long run and that I don't become deficient in anything.

Stay safe, everyone!

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5 minutes ago, Corinne D. said:

Another update to this post for whoever has the patience or curiosity to read it or finds themselves in a similar situation.

As of March, I cannot eat fish anymore. Through February, I tried eating smaller and smaller quantities, but I kept getting worse and worse from ridiculous amounts, so I just gave it up a short while ago. I currently eat only beef. I no longer tolerate vitamins with fillers. I only take vit. C, calcium citrate and potassium citrate in powder form with no fillers. By end February I had also stopped tolerating Entocort, I suppose because of the fillers too (a lot more and nastier than in my vitamins), so I had to stop it - I was on the minimal dose anyway. I have a prescription for hydrocortisone, but have no intention of trying it, considering the current situation.

My doctors and the university hospital they work at are very involved in the research for a vaccine and/or treatment for COVID-19. As such, they have been impossible to get a hold of, nor can I expect the results of the specialised tests they were planning on my duodenal biopsies anytime soon. So the only plan of action I have left is to just keep eating beef and hope that my immune system tolerates it in the long run and that I don't become deficient in anything.

Stay safe, everyone!

I know some people that do the full on carnivore thing and beef is their primary food source, they say to eat the liver and other organ meat from it as all the vitamins you need in it. I know several podcasters etc. that have posted images with the nutritional profile of different organ meats, and animals compared the vegetables and fruits....the organ meat is generally a better source.

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Thanks for the suggestion, Ennis. I have organ meats every day, heart, liver, tongue, bone marrow, anything I can get my hands on. I only skip kidneys, as I just cannot stand the taste. Otherwise, I literally eat nose to tail. I've been mostly boiling the meat in the pressure cooker as I don't much enjoy the texture, but I will move on to grilling and leaving it rare to raw - if I can stomach it, again literally :)

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Corrine,

My heart aches for you - I was in the same situation for 3 years. I am just now returning to where I was 15 years ago. Pernicious anemia along with decades of malabsorption, SIBO and MCAS snuck up on me, and I was too busy with my family to care for myself. 
What brought about the healing was bone broth, weekly B12 injections and low dose Naltrexone. Six months later I’ve added DGL, Digestzyme and vitamin D. I can eat a low histamine diet now, whereas my previous diet consisted of some fish, chicken and few greens. I’ve learned that a fair number of women with celiac are developing MCAS, which throws the body into a major hyper reaction to just about everything. This is treated with a combination of steroids and antihistamines. I’m on inhaled steroids, nasacort, benedryl and Rx antihistamine eye drops due to my eyes also being affected. LDN is also used to manage MCAS. 

I remember from an earlier response that you have top level specialists working with you. Perhaps you would be interested in looking up Dr. Theoharides research on MCAS to see if it may apply to your situation.

In the meantime, I highly recommend bone broth until it’s coming out your pores. I use Dr. Axe and Kettle and Fire. 
 

I hope you feel better soon. 

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Thanks for the support, NNowak. I have seen a mast-cell specialist who has ruled out systemic mastocytosis and found my clinical and histological picture inconsistent with MCAS. Symptom-wise, among other things, I don't seem to have a problem with histamine. Although bone broth does not go down well (home-made), I can have meat cooked three days ago with no issues.

I will check out the doctor you recommended, thanks for the tip. I have been reading up on MCAS as this is where people get crazy reactions to all sorts of small things, but as far as I can see it is a syndrome, not a disease per se, and it is mostly secondary to something else. I may be wrong, but I am also under the impression that steroids and antihistamines only treat the symptoms, but do not actually cure it.

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@Corinne D., I am sorry that you lost the ability to consume fish.  Thinking of you!  

@NNowak — bone broth is very good.  I make it all the time in my Instant Pot. The broth you buy seems very expensive, plus it contains garlic and onion which I still can not tolerate (e.g. activates my Rosacea). I can buy a chicken and get two meals and a batch of bone broth out of that chicken.  Have you tried making bone broth in an Instant Pot or crock pot? 

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Hey cyclinglady!

I have not made bone broth myself. Nausea was one of my chronic symptoms - I have a bionic sense of smell and hearing, thus, I avoided anything I could that had a smell. My sister makes hers and said it smells terrible. How do you make yours?  I’m able to try that now. 
 

Dr Axe has a chocolate flavor that I love. I’m allergic to regular chocolate so this satisfies my cravings. I mix fruit in with the vanilla and coconut milk to get a delicious smoothie. Yes, Kettle and Fire are very expensive. Dr Axe lasts quite a while, so that’s my primary source.  
 

The bone broth, B12 and LDN are what started the recovery for me. 7 months later I’ve gained 16 pounds, running 5 miles like it’s nothing and lifting again. I haven’t felt this good in 20 years!!

I hope you’re well. 

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Hi, Corrine D.,

Sorry to hear you're not improving.  

I've been doing some research and I wondered if any of these might help you.

Some Celiacs develop a sensitivity to sulfur, sulfites in foods...

https://www.doctorauer.com/paleo-diet-not-working-exploring-sulfur-intolerance-as-a-possible-connection/

You said earlier you could not tolerate oils which are often high in sulfites.  Bone Broth is also high in sulfites.  

I'm very sensitive to sulfites.  I can't tolerate bone broth nor sulfites in perfumes and air fresheners.  As the article recommends, Molybdenum helps me.  

And I found this on foamy macrophages....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3168515/

Magnesium therapy was found to be helpful.  Here's another article on magnesium....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5783146/

You said previously you supplemented with potassium, which has to be kept in balance with calcium and magnesium....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029079/

This article studies macrophages and Vitamin D's ability to calm them down.  Calcium works with Vitamin D.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3368346/

Vitamin A helps the immune system....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162863/

Vitamin A is necessary for hematepoesis...

https://www.ncbi.nlm.nih.gov/pubmed/28230720

Vitamins A and D are fat soluble vitamins which may not be absorbed properly in Celiac Disease.

Copper deficiency can cause microcytic anemia.  Copper has to be kept in balance with zinc. Some people who use products containing zinc (like denture fixatives) can develop copper deficiency.  (Remember that magnesium deficiency mentioned earlier?)

https://www.ncbi.nlm.nih.gov/pubmed/3335323

And....copper deficiency and excess sulfur... (remember that sulfur sensitivity mentioned earlier?)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637704/o

Copper and deficient molybdenum in anemia... (remember that molybdenum deficiency mentioned earlier?) 

https://academic.oup.com/ajcn/article-abstract/26/6/657/4695270?redirectedFrom=fulltext

Copper and iron....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3690345/

Riboflavin (vitamin B2) and Pyridoxine (vitamin B6) are also needed to make red blood cells.  Deficiency in either of these can contribute to microcytic anemia. If you have thiamine deficiency, megaloblastic (B12 deficiency) anemia will manifest as microcytic anemia.

https://www.ncbi.nlm.nih.gov/pubmed/23603926

It sort of all goes around in circles. 

I hope this helps.  

 

 

 

 

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Ah, my broth smells like chicken broth.  It tastes slightly different, but that is because of the apple cider which helps to leech the minerals etc. from the bones.  I just add a celery stalk or two and two carrots, salt and pepper (I can not do garlic or onion) with a tablespoon of vinegar.  You can toss in other herbs too.  I am a big user of dill weed which I grow and dry.  I freeze it in Mason jars. 

Whenever I cook a whole chicken or parts, I took the bones, pieces of meat and skin into a freezer Zip-Loc Bag.  Once full, I defrost enough to squish into into my Instant Pot.  

If the smell while cooking gets to you, place the pot on your patio, garage or porch (not raining).  I do lots of cooking outside, especially in the summer.  Saves the A/C from working so hard.  

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@knitty kitty Thanks a lot for the info. There are many symptoms of sulfur intolerance that I don't have. I only get digestive symptoms (pain, diarrhea) when I eat a very small amount of anything else but beef.

I have a running prescription for monthly labs and so far I have been adjusting my supplementation based on those. I have never had any deficiencies so far. The only thing in the low normal range is ferritin, despite me eating about 2lbs of beef a day, including offal.

I've been supplementing with potassium because steroids deplete it. Now that I no longer take steroids I have lowered the dose and will adjust it further based on my labs. My magnesium levels have always been OK, and my vit. D levels always in the optimal range, as I live in a sunny area with very mild winters (roasting undressed in my balcony right now :)).

With a diet rich in liver, it is practically impossible to become deficient in vitamin A, copper, zinc, molybdenum a.s.o.

Actually, the only vitamins I worry about in the long run, now that I no longer tolerate fillers, are vitamin K and folate. Beef is not a good source of either. There is folate in liver, but I must limit my liver intake (so as not to get hypervitaminosis A) so I don't know if I'll be getting enough folate.

As for the macrophages, they were very much clearing in January, either as a result of Entocort, or spontaneously. I'm just not getting any better as far as food intolerances and iron malabsorption are concerned. But thank you for those research articles, it's all very interesting and all connected indeed.

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Corrine D.,

Well, then, I'm going back to my original theory, that you may have a thiamine deficiency presenting as Gastrointestinal Beriberi.  

You've stated "I only get digestive symptoms (pain, diarrhea) when I eat a very small amount of anything else but beef" and you cannot tolerate fillers in supplements.  Those fillers are usually some sort of carbohydrates.  Thiamine is required to break down those carbohydrates.

Thiamine is destroyed by cooking.  If you're cooking your meat for a long period of time so it is easier to digest, like many of us do, you may be destroying the vitamins.  And I doubt you're eating liver raw.  

So, here's some more information....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/#Sec3title

And... this site is wonderful....

https://www.hormonesmatter.com/refeeding-syndrome-thiamine-deficiency/

 

I love the Autoimmune (Paleo) Protocol diet.  But it's low in thiamine sources like Lima beans and green peas.  I started to have digestive problems after eating rice, sweet potatoes, carbohydrate things.  Confused about how the diet that brought me so much relief and healing after going gluten free could be failing, I did a lot of research. I found I have a higher metabolic need for thiamine, because I need more for healing, and because I'm diabetic, and, as my health improved, I became more active and required more thiamine.  

Blood tests don't measure accurately how much thiamine is in your tissues where it actually does it's work.  The body will steal thiamine from the tissues to send to the brain via the blood.  Thiamine is water soluble and is quickly lost during diarrhea.  Your body can become deficient in as little as nine days.  You don't want to become so deficient that there's not enough for your brain to work properly.  

So, I will step down from my soapbox now.  I wish you success in your search for answers and good health.

I hope this helps!

Kitty

 

 

 

 

 

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knitty kitty, you may have a point and thank you for making it and supporting it with those articles. I do try to get as much nutrition as I can, although my diet is so limited. I am aware that vitamins get destroyed by cooking and this is why I try not to overcook my meat and will actually head towards eating it on the rare to raw side if I cannot manage to supplement. Until recently, I took a B50 complex daily. I have an order placed for thiamine in powder form with no fillers and should receive it in the next couple of weeks - hopefully I will tolerate that.

At the same time, I believe there must be more to my condition. For example, I was wondering if with a thiamine deficiency I shouldn't have symptoms all the time and not only when I try to eat any other food but beef. Also, it's not just carbs I do not tolerate. The fillers I was talking about are magnesium stearate, silicium dioxide and cellulose. And should I be in so much pain from a mere teaspoon of mashed vegetables - any vegetables, not only the high-carb ones? Why can I not add a bit of parsley or another herb to a meal? Why can't I have a sip of any herbal tea? And again, why can I not eat fish anymore, when six weeks ago it gave me no issues? Why can I not have one bite of chicken, duck, quail, lamb, pork or deer? I won't even bother wondering about eggs, nuts, legumes, dairy or grains...

Anyway, thank you for your support and pushing me to look further. It's good to have a different perspective on this.

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Corrine,

It really seems like your body is having a hypersensitivity reaction.  This is exactly what I experienced.  The docs I saw, and docs who have MCAS, have stated it’s extremely difficult to diagnose.  There are many variables to accurately diagnose, including your handling of the labs and the lab handling/processing the specimens exactly right.  There’s a high margin or error to the labs resulting in false negatives most of the time. MCAS is primarily a diagnosis of exclusion, confirmed by a positive response to treatment.  Mastocytosis, is not, however. Your health history is significant in the diagnosis as well.  
 

Attached is a link to Dr. Theorides research, with additional links if you care to go down that rabbit hole.  The longer your diet is so limited, the more deficiencies you’ll face.  As Knitty Kitty has stated, not all deficiencies are accurately shown in serum.


https://www.mastcellmaster.com/research.php

Hope this helps. 

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NNowak, thanks, I've had a look over Dr. Theoharides's research. I know MCAS is tough to diagnose and would be ready to believe I have it, even if a specialist would not diagnose me with it. It is just strange that I have no skin symptoms, no flushing, nothing obviously looking like a histamine reaction, and that my digestive symptoms happen with a long delay of 12 to 24 hours. I have been trying natural antihistamines but do not tolerate them. I can try the medical ones that are available over the counter, maybe I'll get lucky with those. I'm having some trouble finding LDN in France, where it is not approved.

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Is naltrexone approved in France?  LDN typically is compounded by a specialty pharmacy in the US. Which is good, because the pharmacist calls before compounding it to see which things you’re sensitive to prior to putting in a capsule, tablet or mixable powder. LDN therapy is off label use of naltrexone in the US. Most western medicine docs poo poo LDN, sadly.  

Flushing and skin symptoms are just a few of the hundreds of cumulative symptoms for MCAS. 
 

 

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Further down the rabbit hole.....

Thiamine deficiency causes mast cells to degranulate releasing histamine.

https://www.ncbi.nlm.nih.gov/pubmed/9184654

"while in thiamine deficiency, increased histamine levels have been reported in the rat thalamus (79) and are associated with cell death and proliferation as well as mast cell degranulation (Powell and Langlais, unpublished observations)."

The study referred to....

https://www.ncbi.nlm.nih.gov/pubmed/10411347

An MAOI (monoamine oxidase inhibitor) may be more helpful.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365677/

And....wow!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5551501/

Passion Flower contains monoamine oxidase inhibitor chemicals and is available over the counter.

https://www.amazon.com/Natures-Answer-Alcohol-Free-Passionflower-1-Fluid/dp/B005QLTLZS/ref=mp_s_a_1_4?keywords=nature's+answer+passionflower+extract&qid=1585421628&sr=8-4

 

Look at the ingredients on this product....(not recommending you take this)....

https://www.amazon.com/Dog-Calming-Aid-Tryptophan-Mononitrate/dp/B01H9Y6J90

 

I use the Passion Flower extract above.  I've found it really helps.  And I take high dose thiamine (300 mg, but I have taken put to 1000 mg).  And all the other B vitamins, because they all work together.  B vitamins are water soluble, so any excess is excreted.  

Hope this helps!

 

 

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One last article about what may happen when you start taking thiamine.  

https://www.hormonesmatter.com/refeeding-syndrome-thiamine-deficiency/

When I started taking thiamine, I thought I was having a reaction.  I felt tingling and buzzing along my arms and legs and body...it's very difficult to describe. I stopped and started with different brands, thinking it was some allergen or the fillers.  Silicum dioxide is sand, inert.  Magnesium stearate is an oily carrier of whatever's mixed with it.  Not really problematic.  Cellulose is plant fiber. Should pass through without a problem.

I found this article so you would know that those strange sensations are really just your body beginning to work properly again now that it's got the proper thiamine based enzymes.  

Thiamine needs magnesium, so consider supplementing with magnesium citrate, as well.

Best wishes on your journey.  Let us know of your progress.

KnittyKitty

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Knitty Kitty,

You have provided valuable and interesting information. I know magnesium affected MCAS, but was unaware of the thiamine connection. 
 

Corrine,

You can try Sweetish Bitters as a digestive enzyme right before you eat. Digestzyme-V from OrthoMolecular is a gentle digestive enzyme taken 15 minutes prior to a meal. Both can be taken together. Biocidin is a natural treatment for GI issues with a great track record. Just a few more ideas....

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@knitty kitty, thanks for the warning. As I was saying I took a B50 complex daily for a few months with absolutely no issues, so I don't expect any with pure thiamine. I will start very low anyway, as I do with any food/supplement.

I gave up the B50 because I started having bad abdominal pain and diarrhea after a few months of taking it daily. When I took it out, the symptoms disappeared. I reintroduced it and the symptoms came back intensified. I took it out again, the symptoms disappeared again. I reintroduced it at a quarter dose, the symptoms came back intensified. I suspect the fillers, not the vitamins per se, because this has happened with other vitamins of different brands, but with the very same fillers: vitamin D, vitamin K, methylfolate.

@NNowak, thank you for your suggestions. Unfortunately, as I have been saying, I do not tolerate anything plant-based, even in tiny amounts. Along the years, I have amassed a whole cabinet of supplements, all high-quality, all hypoallergenic and free-from, all reputedly wonderfully tolerated by the most sensitive of people - yet none of which I have tolerated myself at a much lower than minimal dose. I will not go into how much they cost and how I am throwing them away as their best-before passes. You will understand my reluctance to add to this already spilling-out cabinet.

 

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Corrine,

I absolutely understand!!  A note on the Bs: they can be very hard on a sensitive stomach. After 7 months of healing, I can take 1 of the 2 B capsules recommended for me. Conventional docs don’t seem to know this, yet it’s common knowledge among pharmacists. 
 

If you are ever willing to try a supplement, I strongly recommend DGL by OrthoMolecular in place of any PPI. At the beginning of my treatment, I could barely eat anything, yet didn’t have an issue with this. DGL is taken to heal the mucosal lining. 
 

You may need to look at other factors that are inflammatory in your life. Such as your job, home environment, friendships, personal growth journey, self care, family.........all very personal, but definitely as much a factor in destroying ones body. No need to comment on this due to the personal nature, just another suggestion for consideration. 
 

I feel for you, lady!

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Corinne, 

I apologize for overlooking the obvious.

Are you still taking that Vitamin C?  Could you stop taking it for several days and see if your symptoms improve?  Excess Vitamin C can cause gastrointestinal problems.

https://ods.od.nih.gov/factsheets/VitaminC-HealthProfessional/#h8

"Vitamin C has low toxicity and is not believed to cause serious adverse effects at high intakes [8]. The most common complaints are diarrhea, nausea, abdominal cramps, and other gastrointestinal disturbances due to the osmotic effect of unabsorbed vitamin C in the gastrointestinal tract [4,8]."

I often say, the eight essential B vitamins all work together, and it's rare to have a deficiency in just one.

I believe Tryptophan would be beneficial to you.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622680/

"Tryptophan regulates intestinal intracellular protein turnover, expression of tight junction proteins [111] and microbiota diversity [112], and reduces intestinal inflammation [113]. It is a precursor of serotonin (5-hydrotryptamine) [67], which is associated with the pathogenesis of experimental colitis [114]. "

This is the kind of tryptophan I take.

https://www.amazon.com/gp/aw/d/B00TA7QNZU/ref=sspa_mw_detail_0?ie=UTF8&psc=1

I believe that Thiamine and Tryptophan will help in intestinal healing.  I have had great improvement with these.  

Again, apologies. 

Hope this helps.

Knitty Kitty

 

 

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Perhaps I have not been clear. I have no symptoms on a regular basis, when I eat beef and take vit. C, calcium and potassium. In fact, I feel great, all buzzing with energy and good mood. I work, exercise, do yoga, meditate, write poetry, cook, clean up, sleep well, make love and can't wait for this confinement to be over to go hiking in the mountains again :)

It is only if I try to ingest anything else but the above that I get symptoms: really bad abdominal pain with very small amounts, diarrhea too with bigger amounts. These symptoms occur 12 to 24 hours after ingestion and last for about 24 hours if I don't ingest the culprit again.

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