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» LymeNet Flash » Questions and Discussion » Medical Questions » Suggestions Welcome for Lyme/Celiac Article

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Author Topic: Suggestions Welcome for Lyme/Celiac Article
TX Lyme Mom
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The author of a book on celiac asked me to write an article on Lyme Plus Celiac for her website, but I've realized that I simply don't know enough about this subject, other than our family's personal experience, to be able to do a really good job.

For example, I know that both Lyme and celiac can have cardiac effects, but I'm not sure exactly how cardiac symptoms vary between these two conditions -- other than the well-known electrical conduction abnormalities characteristic of Lyme, of course.

I think I recall reading that Lyme can cause dilated cardiomyopathy, but I'm not sure?

Also, according to PubMed, both Borrelia and celiac can both cause cerebral hypoperfusion (reduced blood flow to certain areas of the brain), leading to brain fog. But are there any other similarities or differences in how Lyme affects the brain vs. celiac's effects on the brain?

As the mother of a recovered Lyme patient who also has celiac, it's hard for either of us to distinguish cause and effect here -- especially when episodes of brain fog re-appear, in spite of a strict gluten free diet.

These episodes of brain fog seem to be driven primarily by the hormonal imbalances secondary to "post-Lyme", but who really knows for sure what causes what here?

I know that there are at least a few celiac patients who are members here at Lymenet, which is why I'm posting this topic, seeking any input which others might suggest for this guest article.

Posts: 4354 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
Keebler
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If, as you say, you don't know enough, decline writing of said article and suggest that she find an ILADS-educdated LLMD or LL ND to interview about it.

It is quite a burden to learn all you can in the comparison category before writing the article - and that could take a very long time.

Yet, the "burden" part might not be intentional. Most people just likely have no clue just how very complex lyme / TBD is.

Yet, like any other medical condition, the basic detail is the same for starters:

Yes, two medial diagnoses can certainly occur at the same time in the same body and since one can make the other worse each requires adequate assessment and treatment - for BOTH / ALL.

Always consider all possibilities.

Those with celiac might be able to appreciate the sad fact that many with lyme have also been overlooked and misdiagnosed out there in the basic doctor's office. So, it's not so simple.

A LLMD or LL ND should be interviewed and asked to supply such article. If they want an expert opinion, it is required to get an expert opinion.

If you do decide to "help out" use the KISS approach: keep it simple, Sweetie. Very simple.

Resist the urge to get into any symptom - any symptom at all. For the enormous expanse can both swallow and obscure.

The article could simply state that both lyme and celiac can cause all kinds of symptoms and issues for every organ and body system, including neurological & cardiac issues.

It's important to note that lyme is also never just lyme, there are various other tick borne infections that often ride with infected ticks and infect both humans and animals.

[Sidenote: celiac can also affect pets.]

They can be separate or both can be on board for anyone. If anyone suspects the other, it should be assessed.

For lyme information, contact the experts; same for celiac.

And there are also other considerations for those with lyme / tick borne disease who may not have "actual" celiac. There are variations and inflammation can occur for many with lyme. Avoiding all gluten often helps.

Sidebar to any article, no matter the length:

These are among the top patient education and advocacy and public awareness & outreach organizations:

www.ilads.org

ILADS - International Lyme & Associated Diseases Society


http://www.lymediseaseassociation.org

Lyme Disease ASSOCIATION


http://www.lymedisease.org

Lyme Disease.org is a top patient education site
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[ 02-17-2017, 03:47 PM: Message edited by: Keebler ]

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Keebler
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Just my thoughts. If there happens to be anything at all in that above post that might be of help, you have my permission to just copy and paste it -- but please keep paragraphs intact if you do. You can simply say that one poster explains it this way: . . . .
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Keebler
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What you say here is really important:

" . . . As the mother of a recovered Lyme patient who also has celiac, it's hard for either of us to distinguish cause and effect here -- especially when episodes of brain fog re-appear, in spite of a strict gluten free diet. . . ."

As someone with both long undiagnosed / untreated TBD and long undiagnosed genetic celiac, I've come to the conclusion that is it just impossible to delineate cause & effect.

Both simply have to be assessed, addressed as best possible and the guessing game as to which is the "cause" can be a waste of time -- unless one suspects that symptom flares could be from some gluten that has managed to sneak into the diet (or into one's lip balm, etc.).

With celiac, there is the ever constant vigil to be sure gluten does not sneak in somehow.

If lyme / TBD is in the picture, it's best that one's LLMD or LL ND sort out patterns as they have the experience and can then adjust treatment plans.
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Brussels
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There are quite a few articles on how the BBB and gut-blood-barrier and Borrelia:

http://www.sciencedirect.com/science/article/pii/S1074761309004245

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3685877/


Ammonia role in Leaky Gut and Leaky Brain and Borrelia

http://hansacenter.com/lyme-induced-leaky-brain-syndrome/

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Brussels
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2 weeks after infection, borrelia makes the brain leak.

Similar mechanisms for Leaky Bowel:

-------------------
How does Borrelia do this? It's thought that the bacteria burrow their way between the cells of the brain's outermost membrane, causing a localized inflammation that, in turn, releases proteins to fight against the bacterial invasion;

this then results in holes in the cerebral membrane.

It's much the same mechanism as seen in the leaky-gut syndrome but, in this case, it's potentially more serious as it involves the brain.

------------------------
https://wddty.com/magazine/2009/april/lyme-disease-a-leaky-brain.html

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Keebler
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The thing is that full volumes of books can be written on symptoms (even damage) that occur both in celiac and in lyme / TBD.
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Keebler
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This really prompts so much thought. I wonder if the best point in a celiac blog piece might be that for those with celiac who don't see the kinds of success with their approach as they should . . . perhaps lyme / TBD might be considered.

Because, for most with "just" celiac [even considering how complex that can be], a gluten free diet - and otherwise attention to "clean" eating - usually brings some nice success with feeling better over at least six months' time.

Most with celiac are aware of the various different search results with "Hidden Sources of Gluten" but if they are not, it's a good place to mention looking at all the lists out there by various celiac sites / authors.

Pharmaceuticals are a major point of concern, too, that many may miss. Gluten is in so many Rx, OTC and supplements as well as in foods that may be labeled GF but are not at all. Always good to be sure that's been highlighted to one's readers.

Of course, any doctor should always consider other factors / variables yet, it's important for the average person to be aware that most doctors are not able to offer full assessment of lyme / TBD for various reasons [that are best explained at the lyme resource links in post above].

So the patient has to go an extra mile and that often means looking beyond what their typical doctor's office can offer, even starting with a conversation about lyme and most certainly about testing / assessment of lyme and all other tick borne infections.

This is not something available at the typical doctor's office. And most people are not going to be aware of that. So, this chance to write a blog piece might be a good place to make that very clear. Their doctor might not be "allowed" to even discuss it properly.

It helps to go back to the question: what do the readers - that particular audience - need to know for steps 1, 2, 3 [and beyond, just point the way]?
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[ 02-17-2017, 03:53 PM: Message edited by: Keebler ]

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TX Lyme Mom
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Thanks for all your suggestions, Keebler. and Brussels.

The only problem with asking an LLMD to write such an article is that too many LLMDs give short shrift to celiac. I don't know of any LLMDs whom I'd trust to compose such an article -- not to say that there aren't any, only just that I don't know who they are.

Regarding folks who do not get well on a strict GF diet, there is a new explanation for "refractory celiac", which. I found on pg. 72 of the book "Gluten Freedom," by celiac expert Alessio Fasano, MD:

"Even when compliance isn't an issue,a high percentage of celiac patients on a GF diet show persistent intestinal damage, even when they are symptoms free with negative blood tests. In other words, although it's the safest alternative we have right now, the GF diet is not a foolproof method to prevent damage from celiac disease developing in susceptible individuals."

There is a new therapy on the horizon which is in Phase 3 trials now, namely Larazotide acetate, which is a zonullin inhibitor by Alba Therapeutics. (pg. 275)

I'm beginning to think that if I do compose a guest article for her website that I'll use it to emphasize the fact that Lyme doctors are doing a great disservice to their patients by encouraging them to eliminate gluten without screening them first for antibodies against gluten because, as we all know, doing so makes it impossible to test accurately for celiac later.

I'm tempted to tell her that I don't feel competent to write such an article. She wants it short, sweet and simple, and this topic is anything but simple. I'm not sure why I thought I could write it in the first place.

I'll add more ideas about leaky gut and leaky brain later, but it's late in the day for me, and I'm weary now 'cause I've been up since the crack of dawn.

I'm still open to suggestions on the subject though. I hate to give up so easily until I've spent more time studying it. I welcome everyone's input.

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Keebler
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you post: ""Even when compliance isn't an issue,a high percentage of celiac patients on a GF diet show persistent intestinal damage, even when they are symptoms free with negative blood tests.

In other words, although it's the safest alternative we have right now, the GF diet is not a foolproof method to prevent damage from celiac disease developing in susceptible individuals."

(end excerpt)

But what if they don't know all that they are really looking at? What if lyme / TBD or other chronic stealth infections [or other factors] are at play here and they are not identified but just left for patients to think it's all celiac?

You do not have to write a dissertation on this, or even an article. Just a blog post that lyme / TBD or other chronic stealth infections can cause similar symptoms and include the top lyme / TBD links.

Yet you do not have to do that if you are not up to it. Just say "no" and let it go with maybe suggestion the top lyme / TBD organizational links.
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ukcarry
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Exactly. Ongoing damage may well be the result of undiagnosed infections/pathogens, so not necessarily resulting from the gluten free diet not being 'foolproof'.

Although it is an interesting topic, it does seem to me that writing this article would put you under too much pressure to get it right, so I agree with Keebler's conclusions.

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