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Balancing healing from celiac, leaky gut, and histamine intolerance


NoGlutensToday

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NoGlutensToday Enthusiast

I've been gluten free for a couple years. I was frustrated by my recovery because I kept experiencing symptoms. Eventually I discovered, through trial and error as well as consultation with my doctor, that I also have leaky gut and histamine intolerance. This was both a relief and highly frustrating ... it meant that the symptoms I was experiencing weren't from celiac (which I was successfully addressing) but these other issues.

Recovery has been difficult. All of these issues require restricted diets, and at the end of the day my food selection has been limited. Celiac and leaky gut are easy enough for me - I followed a customized version of the AIP - but the histamines add a whole other level of difficulty. I had to cut out some supplements, and such standard food items as oranges, ground beef, and pork cause issues with the histamines. For leaky gut you are advised to up your probiotic intake, whether through supplements or kombucha/sauerkraut etc. Well,  most probiotic supplements contain strains that are bad for histamines, and fermentd foods cause major histamine issues.

I've adopted a bit of a recovery hierarchy. First, celiac. There's no compromising here, as I will never touch gluten. Second, I'm trying to heal the leaky gut through cutting out bad foods, increasing the good foods, and trying to live a generally healthy lifestyle. Third, I do my best to resolve the histamines. I do have to cheat on this on occasion, just to get the food I need to get by. I have ordered some DAO supplements and a probiotic designed for those dealing with histamines, along with a quercetin supplement, and hope that this will help. My working theory is that healing my gut will help with resolving the histamine problems.

Does anybody on this board have experience dealing with this myriad of issues? I would like to hear your experiences, what worked, what didn't, etc.

 

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trents Grand Master

Most of us who are celiacs deal with one or more spinoffs of the disease. My understanding is that leaky gut is inevitable with celiac disease, that it is part and parcel of the condition. Personally, I strongly suspect that I suffer from histamine intolerance as well. At least at times. Do you find that the DAO supplements help?

Did you realize that sauerkraut and kombucha are fermented foods? I mention that because fermented foods are something to avoid when you suffer from histamine intolerance.

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NoGlutensToday Enthusiast

Hi trents, thanks for the reply. I do realize that sauerkraut and kombucha are fermented foods. That's what I was trying to say...it is recommended that people take probiotics and eat fermented foods to help leaky gut, but this in turn causes problems for those with histamine intolerance. I had been supplementing with a probiotic and eating lots of fermented foods prior to finding out I had histamine issues, so that would have aggravated my problem.

I haven't started the DAO supplementation yet, so I can't report on that. I have tried eating beef kidneys because they are high in DAO. Besides not being very appetizing the one problem with this is that DAO supplementation needs to be taken roughly 15-20 minutes before eating a meal, as the supplements counteract the DAO in the meal. You can't load up on DAO supplements throughout the day and hope that it lowers the level in your body ... it just doesn't work like that.

I have read people talking about growing pea sprouts because this is somethign very high in DAO. Most seem to grow this an harvest when the sprouts are a few inches high, then throw a bunch of sprouts into a blender and have it in a smoothie or something similar. Not sure how/if this is supposed to be better than just chewing the sprouts.

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Scott Adams Grand Master

It all sounds a bit like my experience trying out my custom food allergy diet, which I'll be writing an article about shortly, and I too was unable to manage being both gluten-free, plus all the foods I am supposed to be avoiding according to my test results. Adding more layers on an already restrictive diet is indeed diffucult.

Others have written about this, and here is a not too old thread:

 And a general search of the forums:

https://www.celiac.com/search/?q=histamine&quick=1&type=forums_topic

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  • 10 months later...
Rogol72 Collaborator
On 5/13/2021 at 11:51 PM, Scott Adams said:

It all sounds a bit like my experience trying out my custom food allergy diet, which I'll be writing an article about shortly, and I too was unable to manage being both gluten-free, plus all the foods I am supposed to be avoiding according to my test results. Adding more layers on an already restrictive diet is indeed diffucult.

Others have written about this, and here is a not too old thread:

 And a general search of the forums:

https://www.celiac.com/search/?q=histamine&quick=1&type=forums_topic

Hi @Scott Adams,

I'm curious if you ever had a chance to write the article you mentioned here about your custom food allergy diet? I was searching and couldn't seem to find anything.

I'm in the process of reducing histamines in my diet and would be interested in the article. Coffee and Tea are the hardest things to give up ... everything else I've found ok to give up!

Thanks,

Rog.

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Scott Adams Grand Master

Yes, and here it is:

 

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      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
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