What am I doing wrong?

[raspberryfirecracker]

9 minutes ago, knitty kitty said:

Where did you get this information?

Being forced to learn in order to get better, like everyone else, I presume. Can't just post a study or two, because it's impossible to summarize 6+ years of information learned from mental effort, doctors, bloodwork, research studies, genetics testing, and treating my deficiencies in a way that wouldn't hospitalize me or cause additional diagnoses, by posting a few articles. 

I just hope it helps someone else if they can get the benefit of it, especially during a bad spell.

Happy healing journey. Hope today is better for you, vapor_girl, and anyone else reading these in the future.

[Scott Adams]

@raspberryfirecracker welcome to the forum, and thank you for sharing. I'm aware of mast cell activation, and we've covered it in many of our site's articles:

https://www.celiac.com/search/?q=mast cell&quick=1&type=cms_records2

and I find your approach of dealing with it using antihistamines and anti-inflammatories interesting, and in our article on what to do if you've been accidentally glutened it's #7 on our list of thigs to try:

 I'm not sure though, about not supplementing B vitamins, as nearly all experts I've read do recommend supplementing vitamins and minerals due to deficiencies caused by malabsorption. 

[trents]

1 hour ago, knitty kitty said:

I would like scientific study or the source of your information.

Where did you get this information? 

Please show your source for this information because it is opposite of the information I have come across. 

Thanks 

 

I found some information to support raspberry . . .'s claim. For instance:

See the second paragraph from here: https://www.worldhealthlaboratories.com/histamine0d5cd131: "Folic acid (with vitamin B12) can help to raise the histamine level."

And here: https://www.histamine-sensitivity.com/histamine_rose-08-13.html: See the last paragraph under the section entitled, "Methylation.": "In fact, folate and B12 can make people feel much worse – and I use that as a clue for HIT if someone mentions it."

But this seems to contradict the two above: https://www.histamineintolerance.org.uk/private/treatment/

"Following supplements have been suggested. It is however advisable to try to ingest these elements by eating foods that contain them and only to resort to taking supplements when absolutely necessary and in accordance with the doctor’s advice or that of a dietician:

Vitamin 😄 lowers the histamine level in the blood

Vitamin B6: is an important co-factor of the enzyme diamine oxidase and its activity

Calcium: reduces the development of wheals and flushing of the skin

Zinc: has anti-allergic and anti-inflammatory properties and constrains histamine release

Copper: is able to elevate the plasma level of DAO slightly

Magnesium: a Magnesium deficit lowers the allergic reaction threshold

Manganese: elevates diamine oxidase activity [viii]

Vitamin B1

Vitamin B12

Folic Acid [ix]"

 

However, none of the articles on these three websites offer any substantial research source support and all three are kind of "pop science" in caliber.

[Scott Adams]

Very interesting indeed. Maybe there is a step by step process that we need to diagram out on how to heal the gut and recover? I am envisioning an article on all things linked to villi damage, and steps to take for recovery. Perhaps a similar one on blood antibodies.

[raspberryfirecracker]

Hi, definitely not recommending anyone just stop B vitamins altogether:

18 hours ago, raspberryfirecracker said:

Stay hydrated with something that has electrolytes like salt and potassium, but no "extra" vitamins yet unless directed by your doctor (wait a few weeks, most b vitamins especially could make you much worse right now).

Was suggesting OP lay off them until getting over the flare. She said she was taking a B complex. High potential to exacerbate both MCAS attacks, and dehydration. And someone recommended an Ultima electrolyte powder, that reminded me it has those "extras" many of us with MCAS react to during acute episodes, b vits included. It was a good rec, it IS a good rec, something my own doctor rec'd at one point pre-dx, but in the context of triggered MCAS, context matters. When mast cells behave badly, things aren't all good or all bad, they're "just not right now."

(Her reaction sounds so similar to what I went through, and back then they didn't know the two were related I just thought I was making myself worse with no idea how--exactly the title, "what am I doing wrong?" Had to make an acct to share since no one had mentioned this yet. I hope I can help others know that even though science doesn't understand why these immune cells act worse after we are successfully treating our celiac disease, at least we have enough anecdotes and finally, research, to know it is a common post-dx reaction...hopefully before anyone jumps to the worse case scenario. Even if vapor_girl turns out to have a different issue it might help the next person who sees it at just the right time. Thanks for the welcome)

[knitty kitty]

Trents and RaspberryFirecracker,

In reference to this statement you found...

https://www.histamine-sensitivity.com/histamine_rose-08-13.html

"They tend to be very low in calcium, magnesium, methionine, and B6 with excessive levels of folic acid. In fact, folate and B12 can make people feel much worse – and I use that as a clue for HIT if someone mentions it."

 

There needs to be a balance between B12 and folate.  Excessive folate when there's not enough B12 can make people feel worse....

https://www.anabundantlife.com.au/methylfolate-feel-bad/

"...inadequate B12 is the most common reason I see why people who have started methylfolate slowly have reacted badly. B12 takes the ‘methyl’ from methylfolate and uses it to recycle homocysteine.

If you haven’t got enough B12, the methyl group can’t come off the folate so it gets ‘stuck’ there, unable to be used. (You may have heard others refer to methyl-trapping. This is the phenomenon I’m talking about.) Moral of the story: get the rest of your nutrients in place, especially B12, before starting folate."

 

    B12 is a methyl donor....important in reducing histamine ...

  https://ods.od.nih.gov/factsheets/vitamin B12-HealthProfessional/

"Vitamin B12 functions as a cofactor for methionine synthase and L-methylmalonyl-CoA mutase. Methionine synthase catalyzes the conversion of homocysteine to methionine [5,6]. Methionine is required for the formation of S-adenosylmethionine, a universal methyl donor for almost 100 different substrates...."

And....

https://www.frontiersin.org/10.3389/conf.fphar.2010.60.00140/event_abstract

"Vitamin B12 and other methyl donors such as pyridoxal 5'-phosphates (PLP) and folate, are necessary as coenzymes of methyltransferase and lead to the remethylation of homocysteine to methionine. B12 is also responsible for the conversion of methyl-THF to tetrahydrofolate (THF). Both B12 and methyl-THF are required for the methylation of homocysteine to methionine, while methionine is critical for the methylation of various biological molecules, including DNA."

 

B12 helps DAO lower histamine....

https://pubmed.ncbi.nlm.nih.gov/28606572/

"Intake of phosphorus, calcium, zinc, magnesium, iron, and vitamin B12 during the luteal phase was positively correlated with serum DAO activity...

 

https://igennus.com/blogs/practitioner-blog/managing-histamine-intolerance

"The enzyme HNMT degrades histamine using the major methyl donor S-adenosylmethionine (SAMe) as a co-factor. It stands to reason that insufficient SAMe (or methylation cofactors such as vitamins B6, B12 and folate) may result in high levels of histamine and that high histamine can deplete SAMe, thereby reducing its availability for other methylation reactions."

 

I read this as....

.....insufficient SAMe or insufficient methylation cofactors such as.... insufficient B6, insufficient B12, and insufficient folate......may result in high levels of histamine.

 

You do need B12 to remove histamine.  

[Posterboy]

1 hour ago, raspberryfirecracker said:

Hi, definitely not recommending anyone just stop B vitamins altogether:

Was suggesting OP lay off them until getting over the flare. She said she was taking a B complex. High potential to exacerbate both MCAS attacks, and dehydration. And someone recommended an Ultima electrolyte powder, that reminded me it has those "extras" many of us with MCAS react to during acute episodes, b vits included. It was a good rec, it IS a good rec, something my own doctor rec'd at one point pre-dx, but in the context of triggered MCAS, context matters. When mast cells behave badly, things aren't all good or all bad, they're "just not right now."

(Her reaction sounds so similar to what I went through, and back then they didn't know the two were related I just thought I was making myself worse with no idea how--exactly the title, "what am I doing wrong?" Had to make an acct to share since no one had mentioned this yet. I hope I can help others know that even though science doesn't understand why these immune cells act worse after we are successfully treating our celiac disease, at least we have enough anecdotes and finally, research, to know it is a common post-dx reaction...hopefully before anyone jumps to the worse case scenario. Even if vapor_girl turns out to have a different issue it might help the next person who sees it at just the right time. Thanks for the welcome)

Raspberry Firecracker,

When the Kynurenine Pathway breaks down the Immune System goes haywire!

See this research about this topic...entitled "Kynurenine Pathway Metabolites in Humans: Disease and Healthy States"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195227/

Taking NIacin (FLUSH and ALL) will help the Mast Cell's to function properly.

I don't have as much time as I used too.....so I will just reference the links/research so you (and others) can do some research on it....

See this research entitled "Niacin Promotes Cardiac Healing after Myocardial Infarction through Activation of the Myeloid Prostaglandin D 2 Receptor Subtype 1"

https://pubmed.ncbi.nlm.nih.gov/28057839/

This research entitled "The kynurenine pathway in schizophrenia and bipolar disorder"

https://www.sciencedirect.com/science/article/abs/pii/S0028390816302246

This research entitled "Niacin-induced “Flush” Involves Release of Prostaglandin D2 from Mast Cells and Serotonin from Platelets: Evidence from Human Cells in Vitro and an Animal Model"

https://jpet.aspetjournals.org/content/327/3/665

And this nice overview article of how the "Niacin Flush" can be healthy....

https://life-enhancement.com/pages/why-the-niacin-flush-may-be-surprisingly-beneficial-to-your-health

The complications of Niacin are attributed to the "Slow Release" forms....

See also this great Hindawi article on Niacin entitled "Niacin Inhibits Vascular Inflammation via Downregulating Nuclear Transcription Factor-κB Signaling Pathway"

https://www.hindawi.com/journals/mi/2014/263786/

It is very exhaustive.

I wrote about my Posterboy journey (SAGA really) here and how I figured out what was happening to me the Lord begin my help!

See also these two Posterboy blog posts!

Maybe it will help you.

For what it's worth Chris Masterjohn says the MTHFR gene variant is just a Riboflavin deficiency.

https://chrismasterjohnphd.com/blog/2019/02/26/mthfr-just-riboflavin-deficiency/

To reference the Schizophrenia issue above another research says the same thing about It and Niacin....

See this research entitled "Could some types of schizophrenia be cured by niacin"

https://www.cabi.org/nutrition/news/66600

I have a friend who has a MADD disorder that can be treated with a Vitamin....but the doctor's ever only Genetics is the cause....

See this research about it....entitled "Riboflavin Responsive Mitochondrial Dysfunction in Neurodegenerative Diseases"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5447943/

Vitamin deficiency that cause/causing health problems are denied by doctor's all the time.

Because if you take a Vitamin.....you won't come back!

See this research about Anemia caused by a Riboflavin deficiency we get the wrong vitamin,,,,,,don't know how to take and confirm our bias!  But almost 100% of the time it is caused by Iron being low right? If you are lucky....they have studied something about Copper....the Co-Factor for Iron....

But I doubt you ever heard a B-Vitamin named Riboflavin could help anemia? Because they haven't studied Vitamins!

Entitled "Suboptimal Biochemical Riboflavin Status Is Associated with Lower Hemoglobin and Higher Rates of Anemia in a Sample of Canadian and Malaysian Women of Reproductive Age"

https://pubmed.ncbi.nlm.nih.gov/31318024/

Note: they don't recognize it as a deficiency (suboptimal is their term I would call that an understatement).....but Suboptimal is how you will fill when you get low in Vitamins and Minerals (don't get me started on Magnesium)

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

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[raspberryfirecracker]

That's a lot of info, but none of it impacts my suggestion to this new person seeking help. What I said is very relevant to the situation, at this particular point in time, for this person, concerning the topic I brought up to them. Nothing more, nothing less. Take care.

[knitty kitty]

23 hours ago, raspberryfirecracker said:

Vapor girl, I made this account just so I could tell you this. Here's my two cents.

Celiac disease is correlated with something called mast cell activation syndrome. Research doesn't yet know if celiac disease triggers the mast cells (a white blood cell), or if the mast cells are what "turn on the ignition" for celiac disease to switch on, but they tend to go together; the longer you've had celiac disease, the more mast cells they find in our intestinal wall. Since you were only just dx'd, your mast cells are probably on overdrive. Everything you eat will make you sick during flares, it's not your fault. You can help control the mast cells with OTC antihistamines (an h1 blocker like claritin or benadryl + an h2 blocker like famotidine) every 12 hours, and either ibuprofen or aspirin (whichever you tolerate better, taken as directed) to control the prostaglandins being released in high numbers by these mast cells. This is not your fault. Stay hydrated with something that has electrolytes like salt and potassium, but no "extra" vitamins yet unless directed by your doctor (wait a few weeks, most b vitamins especially could make you much worse right now). If you try the OTC meds you should notice feeling better within 6 - 48 hours, but it will take about 2 weeks before your body flushes out the histamine and other inflammatory chemicals directly released from the mast cells in your gut. They only just recently confirmed the correlation of Celiac Disease and Mast Cell Activation Syndrome, so they don't yet know WHY stopping gluten--a good thing!--makes the mast cells freak out and make us feel worse, but it's a COMMON reaction, you're not crazy, and it's treatable. It really is like a type of withdrawal, I think, like our immune system made all these immune cells active and then we rip away the gluten and now they have nothing to respond to?! It's hell. Google "celiac disease mast cell activation" or look on the boards and see if it rings true for your situation. Dietarily, eat "low histamine" for right now until you notice you can eat a small meal without the dreaded reaction. Drop those bananas! (I know, they provide a lot of nutrients and are easy, but they are one of the worser things to eat during these flares.)

Hang in there. Don't be afraid to get fluids at the ER if you need to. This will pass. Be well. You're on the right track! 

It's a bad idea to take H2 blockers as you recommend because this can result in a Vitamin B12 deficiency.

https://pubmed.ncbi.nlm.nih.gov/1358279/

Effect of histamine H2-receptor antagonists on vitamin B12 absorption

"H2RAs have the potential to cause vitamin B12 deficiency. This may be important in patients with inadequate stores of vitamin B12..."

Here's a case study....

https://pubmed.ncbi.nlm.nih.gov/11978157/

Vitamin B(12) deficiency associated with histamine(2)-receptor antagonists and a proton-pump inhibitor

 

Nsaids are a bad idea because they do more damage to our villi!

https://pubmed.ncbi.nlm.nih.gov/28220520/

 

Factors associated with villus atrophy in symptomatic coeliac disease patients on a gluten-free diet

"Villus atrophy was associated with use of proton-pump inhibitors (PPIs), non-steroidal anti-inflammatory drugs (NSAIDs), and selective serotonin reuptake inhibitors (SSRIs)."

 

https://www.celiac.com/forums/topic/117685-atrophy-associated-with-ppis-nsaids-and-ssris/?tab=comments#comment-972846

 

Inaccurate information can be dangerous to new Celiacs.  

Take this as a learning opportunity.  

 

[Susie0402]

On 1/15/2021 at 12:52 PM, knitty kitty said:

Wait!  Hold off on the psyllium husks!  Psyllium husks work by drawing water into the digestive tract.  That will result in worsening dehydration.  

I think this book may be very helpful to you.... it explains very well how autoimmune diseases like Celiac Disease affects your body and how proper nutrition can help your body heal.  

The Paleo Approach by Sarah Ballantyne

https://www.thepaleomom.com/books/the-paleo-approach/

 

I make my own soup and stews.  I throw veggies and meat in a covered oven proof casserole dish and bake at low temperature in oven for hours.  Ox tails and greens, Cornish game hen and carrots, lamb chops and Brussels sprouts.  Don't fear your oven.  Or chuck everything in a pot and use the stove top.  

Before diagnosis, I had severe diarrhea like what you described. I found out the hard way there's a thing called Gastrointestinal Beriberi where because of a deficiency of Thiamine (Vitamin B1) diarrhea, nausea and vomiting occurs.  I didn't vomit much, but I was nauseous and dizzy and weak.  Other symptoms of thiamine deficiency include that visual lagging.  I had trouble getting my eyes to work together properly.  

I am worried gastrointestinal beriberi may be a real problem for you because you haven't been eating good sources of thiamine for a long time.  Meat and legumes are good sources of thiamine.  You can deplete your thiamine stores within a month, especially if you are eating a high carbohydrate diet. 

Here's an article .....

https://www.managedhealthcareconnect.com/articles/beriberi-malnourished-woman-after-extended-period-nausea-and-vomiting
Many doctors (like mine) are not aware of gastrointestinal beriberi.  They think thiamine deficiency only occurs in alcoholism.  When I repeatedly stated I did not drink, the doctors shrugged their shoulders, declared I was a hypochondriac and walked away.  I dusted off my nutrition books from university and began researching.   Thiamine deficiency can develop gradually over a period of time.  Once deficient, thiamine transporters that bring thiamine into each cell stop functioning.  High doses of thiamine are needed to allow thiamine to infiltrate the cells.  I had found Dr. Derrick Lonsdale's research on high dose thiamine....

https://www.hormonesmatter.com/gastrointestinal-disease-thiamine/

I took over the counter thiamine supplements to correct my deficiency.   There is no toxicity level to thiamine.  It is safe to take.  I took 100 mg of thiamine with every meal and started feeling better within hours. I took benfotiamine and lipothiamine as Dr. Lonsdale describes and have had great improvement.

You might want to discuss the possibility of gastrointestinal beriberi with your doctor.  

I hope this helps!

Right now I want to get a handle on the diarrhea, as this is the only symptom I'm experiencing. Aside from the effects of diarrhea like dehydration and fatigue. So the psyllium husk is a great idea! I will give it a try if I can find some gluten free psyllium husk.

Thank you for all this information.  I was diagnosed with celiac disease in March 2020, one year ago, my husband lived in a nursing home due to a fall and I had not seen him in 9 months.  My diarrhea returned in the fall, my husband died at Christmas.  I am remaining gluten free but am still having the gut problems, anxiety and tiredness.  I have a doctor's appt. on March 29th and am optimistic about that.

[Scott Adams]

Hi @Susie0402 welcome to the forum!

I'm sorry to hear about your husband. Do you know why your diarrhea returned? Have you been eating gluten? Do you prepare your own meals? 

[Sotonowl]

On 1/19/2021 at 11:01 PM, knitty kitty said:

Trents and RaspberryFirecracker,

In reference to this statement you found...

https://www.histamine-sensitivity.com/histamine_rose-08-13.html

"They tend to be very low in calcium, magnesium, methionine, and B6 with excessive levels of folic acid. In fact, folate and B12 can make people feel much worse – and I use that as a clue for HIT if someone mentions it."

 

There needs to be a balance between B12 and folate.  Excessive folate when there's not enough B12 can make people feel worse....

https://www.anabundantlife.com.au/methylfolate-feel-bad/

"...inadequate B12 is the most common reason I see why people who have started methylfolate slowly have reacted badly. B12 takes the ‘methyl’ from methylfolate and uses it to recycle homocysteine.

If you haven’t got enough B12, the methyl group can’t come off the folate so it gets ‘stuck’ there, unable to be used. (You may have heard others refer to methyl-trapping. This is the phenomenon I’m talking about.) Moral of the story: get the rest of your nutrients in place, especially B12, before starting folate."

 

    B12 is a methyl donor....important in reducing histamine ...

  https://ods.od.nih.gov/factsheets/vitamin B12-HealthProfessional/

"Vitamin B12 functions as a cofactor for methionine synthase and L-methylmalonyl-CoA mutase. Methionine synthase catalyzes the conversion of homocysteine to methionine [5,6]. Methionine is required for the formation of S-adenosylmethionine, a universal methyl donor for almost 100 different substrates...."

And....

https://www.frontiersin.org/10.3389/conf.fphar.2010.60.00140/event_abstract

"Vitamin B12 and other methyl donors such as pyridoxal 5'-phosphates (PLP) and folate, are necessary as coenzymes of methyltransferase and lead to the remethylation of homocysteine to methionine. B12 is also responsible for the conversion of methyl-THF to tetrahydrofolate (THF). Both B12 and methyl-THF are required for the methylation of homocysteine to methionine, while methionine is critical for the methylation of various biological molecules, including DNA."

 

B12 helps DAO lower histamine....

https://pubmed.ncbi.nlm.nih.gov/28606572/

"Intake of phosphorus, calcium, zinc, magnesium, iron, and vitamin B12 during the luteal phase was positively correlated with serum DAO activity...

 

https://igennus.com/blogs/practitioner-blog/managing-histamine-intolerance

"The enzyme HNMT degrades histamine using the major methyl donor S-adenosylmethionine (SAMe) as a co-factor. It stands to reason that insufficient SAMe (or methylation cofactors such as vitamins B6, B12 and folate) may result in high levels of histamine and that high histamine can deplete SAMe, thereby reducing its availability for other methylation reactions."

 

I read this as....

.....insufficient SAMe or insufficient methylation cofactors such as.... insufficient B6, insufficient B12, and insufficient folate......may result in high levels of histamine.

 

You do need B12 to remove histamine.  

So pleased to read this, my Nutritionist has just got me on the spray form of Vitamin B12 and I was getting a little concerned after reading the RFC's post.