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: 4563 | From TX | Registered: Sep 2002
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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:
Lyme Disease.org is a top patient education site -
[ 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:
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.
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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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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]? -
[ 02-17-2017, 03:53 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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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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LisaK
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I had both but not sure if I know al lthe facts and figures, but I am willing to help if needed you can message me if you want.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TX Lyme Mom
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Thanks, LisaK. I am especially interested in your experiences and whether you have been able to discern which symptoms are/were caused primarily by celiac vs. which symptoms are/were caused primarily by Lyme and co-infections.
Rather than sending you a PM, it might be beneficial for others if we discuss these ideas openly here under this topic -- unless medical privacy is a special concern for you, of course, in which case please feel free to PM me about that aspect of it.
Here's an example from our family's experience. Our daughter had completed an experimental protocol and felt confident that she had Lyme, Babesia and Bartonella all under good control although worry about relapse was always an ever-present concern for her.
However, deep fatigue and black depression were still present to the degree that she wasn't able to function optimally, or even very well at all. I remember thinking about the hypothetical question that doctors will ask a new patient who has multiple complex problems, "If we could get rid of your top 1, 2, or 3 complaints, what would those be?"
I kept thinking that if we just had a magic wand and could get rid of her depression and fatigue that her life would improve dramatically to the point of normalcy.
Well, guess what two symptoms went away after her celiac was diagnosed and after she began a strict GF diet? Yep, those two very worst symptoms -- fatigue and depression.
And guess which two symptoms come roaring back immediately whenever she has an accidental exposure to gluten. Yep, that's right -- those same two dreaded and incapacitating symptoms. What's even worse is that these two symptoms are very slow to go away afterwards, but tend to linger for ten days or more. Miserable indeed.
So, now we know that for her at least, her deep, dark black depression was caused primarily by celiac, not by Lyme or Bartonella. What a blessing it has been for us to understand this connection because now she feels more hope about being in control of her life.
She had never been willing to resort to mood-altering Rx meds (SSRIs, etc.) because we had studied enough about them to know that they don't work very well and that it can be very hard to get back off them, so she was determined just to tough it out, without resorting to any Rx antidepressant meds.
Tummy issues and appetite improved too, of course, but that was never her chief complaint because the mood and fatigue issues were so major in comparison.
Therefore, my question to you (or to anyone else who has both celiac plus Lyme) is whether you have been able to discern which of your worst symptoms relate primarily to celiac vs. which ones can be attributed primarily to Lyme?
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LisaK
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sure, I can discuss here..
I think my symptoms overlapped, but also I can tell them separate for sure.
like your (daughter) experience I can tell when I have gluten that I get sicker in many ways- GI, depression, anxiety, etc. although my anxiety may be due to my genetics in a different way from celiac. (I have a glutamate issue too found through genetics and I don't make gaba and other issues)
I don't feel very lyme-ee right now at all. In fact I don't feel many lyme related symptoms. but I *do* have some fatigue caused by adrenal and thyroid issues and another unrelated thing going onn too.
im sorry if I sound confusing. im just trying to decipher what is what with me. so complex.
my case may be unusual in that I suspected celiac, as did a few drs of mine, before I was dx with lyme and cos. so I had been off of wheat and gluten except I was eating spelt becsaue it didnt seem to bother me much unless I ate a lot of it wihtin a few days of each other.
I had one EGD and such testing and then realized I should be actually eating the deadly stuff to get a true telling- for at least 6 months.
So I started eating gluten freely for that 6 months. it was pretty bad living with it. many many sx.
then I had new EDG and colonoscopy and was found 'inconclusive'. so they labelled me non cleliac. my mom and I werent' sold on that so I had a single genetic test done for the known celiac gene (s) at that time, which was about 8-10 years ago I think.
negative for celiac . so I attributed all my sx of gluten intolerance to just that along with a confirmed gluten allergy report from an allergist.
the allergeist told me to never eat gluten again it was very severe allergy. ok, well, I tried. it is hard, as you know! and I stayed on spelt becasue I couldn't give up things like pancakes and other goodies. it didn't bother me too much and I rotated.
then I got really sick when I was bitten by another tick. that changed everything . I could no longer eat any spelt or even have a cheat day once in a while any more. (I used to go all week no spelt or wheat and then on the weekend have a slice of pizza or something.....)
pretty much all grains bothered me then. even rice. I could eat no whole grains of any kind for years also. they really gave me GI upset. that was lyme (or this other new issue ive newly discovered maybe)but not the celiac.
so it has been one year since I last had any wheat or gluten . that I know of. I was pretty diligent with not eating any but not 100%, such as when I go to a party I would ask if there was gluten or wheat (since many people still have no clue what gluten is).
I would not , though, try my hardest at things like buffets or restaurants, etc... if a salad or sauce looked benign I would indulge.
about 1.5-2 years ago I had a full genetic test done and went to a genetic person. I got a call from my genetic specialist a couple of months ago and he informed me that NEW celiac genes were found and that I am now considered a true celiac and thank GOd that I had been gluten free anyway!
so now I am trying to pay more attention to what I eat! but this is harder even going this extra mile, even though my diet is so limited any way. I did have an accidental gluten in a meatball the other day!
I have been having terrible GI issues since. not sure if it is related since I still have GI issues from damage from lyme and my other problem, but I do know that I don't usually get gas when I eat food and I have been having terrible pockets of gas with constipation since the other day. sorry for being graphic.
I used to deal with deep dark depression for my entire life. until I did go off al lgluten. I did however get a TON of relief also when I went on abx for lyme. those abx really took almost all my anxiety and depression away so that I knew a lot of that was all lyme related, or from cos or somethings else treatable with abx.
so that was a huge relief.
I have been feeling depressed lately the last couple of months and not sure why . could be this other issue im looking into. could be the weather, my health in general bringing me down, etc. but could be gluten sneaking in too since im so new at a total celiac diet.
the depression I did hear takes about 6 months to leave you, so .... who knows.
I hope this answers something for you. let me know if you want more from me.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TX Lyme Mom
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LisaK, wow! Your summary is very informative because it illustrates the progression of your celiac from what was probably simple gluten intolerance at first, but now most likely genuine autoimmune celiac after your second tick exposure which seems to have pushed your GI tract over the edge.
Not everyone who carries the celiac gene develops celiac, and celiac experts believe that a triggering factor (which can be anything from trauma to stress to infections) is required to activate true celiac in someone who is genetically predisposed.
That's why I'm inclined to think that it was your second tick exposure which pushed you over the edge and caused you to develop the autoimmune form of celiac, which is what true celiac really is, of course.
The two books that helped us the most when our daughter was first diagnosed with celiac were these because the explained emphatically why even minor traces of "hidden gluten" and/or "cross-contamination" with gluten can be enough to trigger a full-blown episode of acute celiac symptoms.
At first, it was hard for us to comprehend how something as seemingly innocuous as an accidental gluten exposure, such as being served a gluten free pizza which had been sliced with a contaminated knife could cause any problem -- until it happened to her. That's when it became really real.
Now that I've learned more about the new research into the celiac genes, I'm beginning to understand better how one can carry one gene for celiac plus another gene for sensitivity so that one's acute reactions to minor exposures with gluten can be intensified so greatly.
Even something as simple as licking a business envelope with glue which contains gluten can be enough to trigger symptoms. Whoever woudda' thunk it?!
It's not really real until it happens to you, and if we hadn't already read about it in those two books, we probably never would have figured it out by ourselves at all.
Since then, there have been so many new books about celiac to appear that it's hard to name the one best book on the subject. I'm just so thankful that those two books had come out shortly before our daughter was diagnosed or I'm not sure how she would have been able to learn to avoid all of the sources of unsuspected gluten.
Not all celiac patients are this sensitive, but it sounds as if you could be one of them. Therefore, my advice to you is to focus on reading and studying everything you can get your hands on about sources for hidden gluten and avoiding them totally.
This includes throwing out your old toaster and purchasing a new toaster dedicated as a GF toaster. Likewise with your bread making machine if you have one. And watch out for the baking sprays which contain gluten, too.
Get rid of all bath and beauty products with gluten, too. Think wheat germ oil here. Especially lipsticks, but anything that you use on your skin can trigger a reaction, especially if it's ingested like lipstick.
Otherwise, you will continue to blame everything else including the weather on your unpredictable symptoms and that can become very confusing and frustrating indeed.
Watch out for MSG, too, especially since you claim to have too much glutamate and not enough GABA in your brain, an imbalance that is very common among autistic children. There are numerous websites about MSG, but I've forgotten which ones are best. (Search messages by LymeToo because I'm pretty sure that she has listed most of the best MSG websites.)
Well, that's all I can think of right now.
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Keebler
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- TX Lyme Mom states, in last paragraph of post just above,
"Watch out for MSG, too, especially since you claim to have too much glutamate and not enough GABA in your brain, an imbalance that is very common among autistic children . . . ." (end quote)
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG (monosodium glutamate) and can be very excitatory
Very important articles that explain why Glutamine / L-Glutamine can be so destructive to those not just with lyme but with other issues that affect the very structure of the nerve fibers (when even a little bit too much out of balance).
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all - and be especially caution of tea bags as many contain this danger). -
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TX Lyme Mom
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LisaK, I remembered one more helpful idea for you -- namely, our daughter's #1 favorite GF cookbook author, Daniella Walker, because she uses a lot of a special brand of almond flour and a special brand of coconut flour, both of which help to maintain a favorable glycemic index because they are both high in protein.
So many GF bakery products are too high glycemic, and our daughter does best when she maintains tight control of her blood glucose. Whenever her BG drops, then that can cause a surge in adrenalin to try to boost it, but she has weak adrenals and low cortisol. That's why she is so sensitive to fluctuations in blood sugar, and I suspect that you probably are, too.
I've tasted some of these simple recipes and it's hard to believe that they are really GF. What's really surprising though, besides how delicious they are, is that they hold you without that sudden drop in blood sugar a couple of hours later.
The main inconvenience about these ingredients is that they go stale and rancid easily, so you need to store them in either the fridge or your freezer to extend their shelf life. That's a minor inconvenience, all considered.
The only other inconvenience is that these special ingredients must be special ordered directly from their manufacturers, and that means planning ahead for holidays so that you don't run out of them before major holidays when the manufacturer might be out-of-stock. That's a bummer.
Oh, another point of interest is that this author has managed to control her severe MS without medication through diet alone, with the exception of very infrequent bad flare-ups when she had to resort to Rx meds to regain control. Otherwise, this author is the poster girl for overcoming MS through diet alone. Her story is truly inspirational.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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LisaK, Still one more idea for your consideration, based on our daughter's diagnostic experience. In spite of her dramatic presentation in the ER with such severe vomiting and diarrhea that she was so dehydrated that they had trouble inserting an IV line for saline because her veins were collapsing from dehydration, when she was scoped the next week by a GI specialist, he found only "patchy villous atrophy."
And this event occurred more than two decades after another astute doctor had suspected celiac but when her screening blood test was wrongly interpreted as negative, thanks to her selective IgA deficiency. In other words, she had most likely already had celiac for 2+ decades before her dramatic presentation in the ER.
Since then, I've read on-line about a couple of other celiac patients who did not have very much visible intestinal damage who shared her same genetic marker.
Also, I've just finished reading Dr. Alessio Fasano's book on celiac which cites research which states that a different genetic marker for celiac is correlated with patients who have very little or no observable intestinal damage. (I failed to mark that page well enough to find it again, so I can't give you that exact citation.)
In other words, you could have a high degree of sensitivity to gluten, symptom-wise, but without sufficient intestinal damage to have earned you an earlier celiac diagnosis, just as what we suspect occurred in our daughter's case.
This strengthens my argument that gluten could account for a much larger degree of your current symptoms which have been attributed to Lyme disease than one might suspect.
That's why your best hope for rapid improvement could depend on adherence to a very strict GF diet without any wiggle room for "cheating" -- because you are going to make enough honest mistakes anyway, especially at first when you are learning more about hidden sources of gluten.
This is why I tend to get on a soap box, faulting LLMDs who try to save their patients money by not ordering lab tests to "rule out" celiac. This is a disservice to unsuspecting celiac patients who also suffer with Lyme.
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Brussels
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It's a lot of good discussion to try to separate celiac symptoms from lyme, but it isn't scientific , in my view.
If it is proven that borrelia damages the gut mucosa in the articles I refer above, not only of the brain, but of the placenta and the intestine, and that it does ON PURPOSE, as many other microbes do,..
food allergies are just a direct consequence of that breaching mechanism.
For Borrelia and many other pathogens, it also may be interesting to have the host full of allergies, so that the immune system gets busy fighting food molecules, pollen molecules, and not fighting pathogens.
Separating symptoms of blood brain barrier disruption, or gut mucosa disruption from Borrelial infections is like saying Borrelia is NOT causing the celiac problem, which in my opinion is wrong.
Not only Borrelia cause disruption of BBB or Gut barrier but MANY pathogens do too. It is a way to invade the host, and in my opinion, to make the host lost in what to fight (if your immune cells are busy fighting food molecules, they won't be busy fighting pathogens that just crossed the barriers of protection).
Many pathogens know exactly how to cross the barriers, or damage them: just read the texts above.
Helicobacter p, E. coli, Clostridium dif, Clostridium perf., Rotaviruses, Listeria m, Coxsaekievirus B... and many others.
We all have fought parallel infections during active lyme, and everybody has already fought some of these infections above.
Pin-pointing what started the allergy problem seems to me, like not very important. The point is that it is known that lyme disease causes allergies, or make allergies worse.
Whether gluten, or casein, or fruit allergies, it doesn't matter much in my view.
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Brussels
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Here is a copy paste of part of an article that I posted above: ------------------
The human body is bordered by the SKIN and MUCOSA, which are the cellular barriers that define the FRONTIER between the internal milieu and the external non-sterile environment.
Additional cellular barriers, such as the PLACENTAL and the BLOOD-BRAIN barriers, define PROTECTED niches within the host.
In addition to their physiological roles, these host barriers provide both physical and IMMUNE DEFENSE against microbial infection.
Yet, many pathogens have evolved elaborated mechanisms to target this line of defense, resulting in a microbial INVASION OF CELLS constitutive of host barriers, DISRUPTION of BARRIER integrity, and systemic DISSEMINATION and invasion of deeper tissues.
Here we review representative examples of microbial interactions with human barriers, including the INTESTINAL, PLACENTAL, and BLOOD-BRAIN barriers, and discuss how these MICROBES ADHERE TO, INVADE, BREACH, or COMPROMISE these barriers.
--------------------------
Pathogens may also bind to endothelial cells at or near the TJs = TIGHT JUNCTIONS (between cells of BB barrier, or gut barrier or placental barrier)(Grab et al. 2004, 2005)
... and induce the secretion of host proteases that can cleave TJ or AJ proteins.
For example, N. meningitidis induces specific cleavage of the TJ component occludin through the release of host matrix metalloproteinase 8, resulting in endothelial cell detachment and increased paracellular permeability (Schubert-Unkmeir et al. 2010).
A similar strategy is used by BORRELIA, which was shown to degrade TJ proteins and allow passage of monocytes (Reijerkerk et al. 2006).
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TX Lyme Mom
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Brussels, Thanks you very much for taking the time to compose such a complete answer. I especially appreciate the links to the articles which you cited in your previous messages.
I can understand why it might seem academic and irrelevant trying to discern which disease process is responsible for which symptoms, but I do have a valid reason for wondering about it because I am active in our TxLyme Yahoo group.
Consequently, I find it difficult to convince patients who seem likely candidates to get tested to rule out celiac. It's as if they are already feeling so overwhelmed by Lyme disease that they simply do not want to consider any other possibility for their miseries.
Nevertheless, our daughter's experience has taught me how important it is to sort it all out because a simple GF diet is seldom effective unless the person appreciates the important of hidden gluten and of cross contamination with gluten.
Without a proven celiac diagnosis, these patients are doomed to failure in achieving optimum health because they tend to blame all of their symptoms on Lyme, instead of understanding that celiac can cause very similar cardiac symptoms and very similar cerebral symptoms.
They simply don't want to complicate their lives with anything else, without realizing that a proper celiac diagnosis could simplify their lives tremendously -- after they get over the hump of learning how to avoid all sources of gluten, which is a very steep learning curve, to be sure.
I guess I'm just frustrated, that's all. "You can lead a horse to water, but you can't make him drink."
Posts: 4563 | From TX | Registered: Sep 2002
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posted
In our experience, a rigorous no-gluten diet resolves symptoms of celiac. This includes having one's own toaster, pots and pans, reading every label, and going only to restaurants that one knows are strict with this.
The other thing is that in our experience, it is antibiotics and other medications (naproxen for instance)that cause leaky gut, not Lyme.
My kid has type 1 diabetes, celiac, many other issues (seizure disorder for one) and was treated for Lyme. Type 1 and celiac are genetically related.
My understanding is that celiac is genetic and is an autoimmune disorder. That is separate from leaky gut syndrome: my daughter, on antibiotics (with diabetes that is well-controlled but still diabetes of course) developed webs of yeast throughout her gut, visualized on endoscopy. She was acutely ill for a long time until this was clarified.
She now get sick for a few weeks with infinitesimal amounts of gluten ingested by mistake. That has not happened for almost a year.
The leaky gut from antibiotics resolved 10 years ago.
As long as she makes no mistakes with gluten, her gut health seems fine.
One other thing, during the leaky gut, she also could not tolerate dairy, which is no longer a problem or her.
I don't understand the request for an article on celiac and Lyme. A person can clarify this by going off gluten for 6+months. The two seem entirely separate to me and if it is hard to determine which symptoms are from Lyme and which from celiac, the answer is easily obtained by being careful with gluten.
ps I was on Lymenet for many years and have been gone for 10, so I have few posts on this username
Posts: 54 | From Massachusetts | Registered: Aug 2016
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LisaK
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WOW TXlymemom!!! thanks fo rthat info! and yes, I am really "new" to full celiac since I was one that snuck some here and there and didn't realize the full extent to what needs to be looked at! sheesh. the toaster- never thought of that!! wow wow wow.
my husband can't seem to grasp this. he says " you can't have just a little of this?". I am not sure what sx are from this or from something else. so I'm kind of overwhelmed now that I read your post.
I thought of skin care and hair care, etc, but sharing baking pans, which I do, and stuff like that. what a pain this will be. oh my.
Is there a way to tell which are my celicac symptoms??? when you say full blown symptoms what are they? do you have a link?
I was tested + for gluten allergy years ago. so I think that is on top of the celiac. and yes, I know about MSG for me. if I eat even the slightest of that I get an excruciating head pain for hours or days.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
Brussels, I get your point about what you are saying, but I do think that knowing what could be what in the sx department is good to know for me. yes, I agree that lyme and any autoimmune disease can make this all happen, but I also know how gluten makes me feel.
not sure that makes sense right now . I am getting really tired and losing my brain fast right now. and mabe im not saying what I should be to express my actual thoughts.
Keebler- yes on al you said. I know . I get "excited " very easily form all excitotoxins. it is had , or was really hard to get this ball rolling with my diet and stil is a huge challenge.
I have so many diet things that I have to watch that it is lucky I can eat at all! super duper UGH here...
my body holds metals, INCLUDING iron and im genetic for homochromatosis so there goes high iron foods,
then the excitotoxins.. there they go MSG- no go, and out of my diet gluten, .... eating for my blood type (which does make me feel better) and leaves coconut high and dry..
corn and almonds mess up my thyroid, so they are limited... and allergic to many foods now .
so basically I can eat nothing. pretty much everything bothers me in some way, except for cherries. and beef. and other lean meats, fish.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
TXLymeMom, does the celiac cause your daughter to vomit and dehydrate? (when she went to ER) I had EGDs years ago beacesu they kept suspecting celiac, but my tests were always "inconclusive" and I had always wondered why. and also wondered why no dr went on further with that. but maybe because they just didn't know enough.
so that is why I had the DNA test back then , but now with DNA improving and ebcoming less expensive, etc, and that they found a new gene for celiac, my memory of this "inconclusiveness" is striking me hard.
Thank you for all yo uare saying here. it is really connecting to me and hits home for me totally! and your way of typing it out is really esy for my damaged brain to read and understand immediately! that is a huge thing - so thank you big time
and yes, I have trouble with regulating BS and that is another thing they've tested for ever on me , and now even I seem to get BS rushes as soon as I eat much of the time. like within seconds , so I'm thinking it's my fulty thyroid or adrenals.
but am now suspecting my newest investigation in to my health (or unhealthiness) a compressed brainstem from intracranial pressure. which I guess could come from lyme, food, or whatever.
im just so fed up I really ask God why I am living like this. I tel lmyself it's for my kids so they learn and won't have to suffer with al this stuff as they can know and get hel p sooner than later if need be.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
Keebler, now I remember what else I was igon gto say- my genetic dr told me to never let anyone give me n acetyl cysteine. he said it could kill me. when I looked it up I found it is loften used for many things.
hope I never get any by accident.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Lisa- why is NAC so bad for you? I couldn't take it either but didn't know why. I have celiac too.
Posts: 859 | From Southeast | Registered: Mar 2011
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LisaK
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Member # 41384
posted
I don't remember exactly what the gene guy told me except he said dont let anyone give me that. He did explain it then, but I onlly wrote the name down. I think im going to take another apt with him though
there is so much I didn't write down and I totally forget.
he also said to not take any large doses of vit C.
I do remember him talking a lot about my iron issues and how the iron I don't get rid of mixes with somehting that is leftover from ntot working right,
and they combine and mix wiht something else or whatever and that forms some balh blah blah... so much info. I will look for my other notes. maybe somehting is written down .. sorry
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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