histamine intolerant, severe folate intolerance, SIBO --- please help

[Lrn5]

Sick 3 years - down the thyroid rabbit hole that turns out I don't even need thyroid meds!

Smart new doc recently found SIBO, histamine intolerance and very intolerant to folate/B12 but need to take it as I have high homocysteine. (History of IBS but otherwise healthy and all massive blood work, scans, mri, evaluations, etc in the last 3 years normal). Low histamine diet is the ONLY THING IN 3 YEARS that has helped my symptoms - by the 3rd day remarkably better but far from normal. I am better where I can finally sort of enjoy things again but not well. This new doc says I should look into methylation but she isn't familiar with it. I am in the USA. I don't know if it is ok to ask for doctors names on here but if so please please please give me ideas. Most docs do phone appts now so I will work with anyone recommended. I did find a doc in Michigan who is helping me analyze a 23&me test to look at snps (?) and methylation but don't have results yet. I am so sad and desperate and sick of feeling bad and I think I'm just now finally getting on the right path to hopefully figuring this out. I have read some posts on here by @jwat87 and others who are so knowledgeable - I am trying to learn all I can but it is so complicated!

I'm hoping to get feedback on: 1) tests I should have done to further look into methylation and 2) doctors who are good with this type of issue (if appropriate to share names).

Symptoms - head pressure and weird head sensations, fatigue some days bad, tingling in legs, achy muscles/joints, low blood pressure but strong pulse I feel in head I can sometimes hear in my right ear, runny nose, congestion, puffy eyes, etc - awful - some days prior to low histamine diet I'd think I was going to pass out or die.

 

[Muon]

A folate receptor antibody test (FRAT) can be done regarding folate intolerance:

I'm being told just recently that this is the only lab in the world that provides this test: Iliad Neurosciences Inc.

Please update the thread if you are going ahead with this test.

 

[Lrn5]

A folate receptor antibody test (FRAT) can be done regarding folate intolerance:

I'm being told just recently that this is the only lab in the world that provides this test: Iliad Neurosciences Inc.

Please update the thread if you are going ahead with this test.

Thank you very much - looking in to this today.

 

[dave11]

I have histamine intolerance, MCAS, and am an under-methylator. Also, I have an allergic reaction to folic acid, folates, and vitamin B12 (in all its forms except for cyano).

For energy, I take the flushing form of vitamin B3, nicotinic acid, also called niacin. The nicotinic acid depletes methyl donors. While the nicotinic acid improves my symptoms, the methyl depletion worsens them. To compensate for the loss of methyl, I take DMG, dimethylglycine.

The more commonly used alternative to DMG is TMG. DMG improves my symptoms, while TMG does not. Apparently, they each follow a different metabolic pathway. For some people TMG works best, for others DMG. From what I have read, DMG has fewer side effects than TMG, at least in children.

On account of my folate and vitamin B12 intolerance, I have never tried a full methylation protocol, and this is all I do for methylation. While it is not an optimal plan, at least the DMG does make me feel better when methyl is running low. I have not received any medical advice concerning this, and I have no idea whether a doctor would approve of this approach.

This study on folate and B12 deficiencies, and polymorphisms, in the post folic acid fortification era, may be of interest:

https://nutritionj.biomedcentral.com/articles/10.1186/s12937-015-0006-3

 

[dave11]

While I have not had any problems from DMG or TMG, some people do. For example, depression, as mentioned in a PR post below:

I've been suffering from a lot of health problems for some time now, in particular mental health problems such as anxiety, ocd and on and off depression. Somebody told me that these could be caused by a problem with under or over methylation linked to histamine levels. I heard there was a test I could do with niacin where a flush from more than 100mg would tell me that I would have low histamine levels and a flush from less than 100mg would mean high histamine so I did this test about a month ago and flushed from75mg which indicated that I had high histamine which then meant that I was probably undermethylating. So a few weeks ago I began taking methyl B12 and methyl folate to see if I'd benefit in any way. I started on 400mcg of methyl folate and 2000mcg of B12 and at first I was ok on this but after a few days I increased the folate to 800mcg and I became severely depressed so I stopped both the folate and B12 and the depression eased off. I then decided to see if I might have more luck with TMG or SAMe but TMG made me feel good for about an hour but then I crashed into a depressed state and SAMe (200mg) had the same effect. I tried lowering the dose of SAMe to 50mg but even on this amount I also became severely depressed (even bordering on suicidal) so I stopped the SAMe too. The problem is that it's been a week now and the depression hasn't worn off so I fear I may have done some real harm to myself with these methylation supplements. The thing is, after taking the methyl folate and reacting badly to it I figured maybe I'm overmethylating instead so I tried some regular folic acid and B12 and felt terrible on these too (depressed also) so I just can't figure this out. I've also tried Mathionine in the past with the same result (bad depression) I'm guessing that if I didn't have a problem with methylation either way then I wouldn't react badly to these supplements to begin with. Could this kind of reaction to methyl supplements be due to a deficiency in something? Maybe Methyl B12 or perhaps potassium? I'm just really confused.

 

[Pyrrhus]

very intolerant to folate/B12

It is quite common to have difficult start-up effects when trying folate or B12.

As always, it is wise to start with a very low dose and very slowly increase the dose as you can tolerate it..

It took me 2-6 weeks to get to the point where I could take methyl-folate once a day without any start-up effects.

It took me about 2 years to get to the point where I could take 250mcg B12 per week with minimal effects!

 

[Lrn5]

I have histamine intolerance, MCAS, and am an under-methylator. Also, I have an allergic reaction to folic acid, folates, and vitamin B12 (in all its forms except for cyano).

For energy, I take the flushing form of vitamin B3, nicotinic acid, also called niacin. The nicotinic acid depletes methyl donors. While the nicotinic acid improves my symptoms, the methyl depletion worsens them. To compensate for the loss of methyl, I take DMG, dimethylglycine.

The more commonly used alternative to DMG is TMG. DMG improves my symptoms, while TMG does not. Apparently, they each follow a different metabolic pathway. For some people TMG works best, for others DMG. From what I have read, DMG has fewer side effects than TMG, at least in children.

On account of my folate and vitamin B12 intolerance, I have never tried a full methylation protocol, and this is all I do for methylation. While it is not an optimal plan, at least the DMG does make me feel better when methyl is running low. I have not received any medical advice concerning this, and I have no idea whether a doctor would approve of this approach.

This study on folate and B12 deficiencies, and polymorphisms, in the post folic acid fortification era, may be of interest:

https://nutritionj.biomedcentral.com/articles/10.1186/s12937-015-0006-3

Dave - I am so very grateful for this information. After wasting 3 years on thyroid and feeling so sick (in ways I can't even describe - the head pressure and feeling like passing out but never do, terrible fatigue etc.)... anyway the low hisamine diet has brought me back to life where I can function but I have a long way to go to heal my gut and return to normal So thank you from the bottom of my heart for your reply.

I will look into the DMG vs. TMG - totally new to me. And will read the study. How did you know you have MCAS? I had a top doc on this check me out last month and he said it's not MCAS. I think there is a blurry line between the two and one runs into the other as mast cells release histamine makes sense that it's not clear cut.

I have another doc in Michigan helping me run 23&me through Genetic Genie to check out MTHFR etc and should help determine what to use. He gave me a liquid B mix and told me to start w 1 drop every other day - well I tried 3 drops the first day and by the next day my symptoms were x 100 . My homocysteine is high so I need to get some folate in one way or the other.

Before this hit me 3 years ago I was the healthiest/fittest person

 

[Lrn5]

It is quite common to have difficult start-up effects when trying folate or B12.

As always, it is wise to start with a very low dose and very slowly increase the dose as you can tolerate it..

It took me 2-6 weeks to get to the point where I could take methyl-folate once a day without any start-up effects.

It took me about 2 years to get to the point where I could take 250mcg B12 per week with minimal effects!

Pyrrhus - thank you thank you for your response. There is so much comfort after being so unwell for 3 years to get advice like this from people who experience the same things.