Lyme Disease And Gluten?

[healthwarrior]

Hi there,

I am new to the forum and was very interested in something..... I have chronic late stage lyme disease, as well as Hashimotos, and have been very ill for 10 years. I just started seeing a nutritionist who is encouraging a gluten free diet to reduce my symptoms. Does anyone know the connection between lyme and gluten? I was tested for celiac disease several years ago though columbia celiac center and was negative (all antibodies negative, endoscopy negative, but had one gene for celiac disease). My RD thinks that gluten is severely contributing to my symptoms,,,,,, especially the neuro ones. Contributing,,,, perhaps..... but for her to say that many of my neuro symptoms will go away on gluten free diet perplexes me since all the neuro symptoms are so due to lyme (perhaps a few to gluten, but some of the neuro symptoms I have are classic lyme and not experienced by others w./ celiac disease (I have researched that). I know I must be on a yeast free due to being on antibiotics for the lyme, but the RD feels gluten is really the culprit of the yeast problems. Also, my thyroid antibodies very high, so for that, the gluten free diet would definitely help.

So, anyone here with lyme disease and following a gluten free diet??

Thanks,

Nancy

[danikali]

May I ask what your symptoms were for lyme disease? Someone brought that possible diagnosis to my attention the other day.......I'm still in the testing stages for gluten problems myself.

-Dani

[healthwarrior]

May I ask what your symptoms were for lyme disease? Someone brought that possible diagnosis to my attention the other day.......I'm still in the testing stages for gluten problems myself.

-Dani 

<{POST_SNAPBACK}>

Oy. so many to mention...... joint pain, knee swelling, severe fatigue- mental and physical, vasculitis of brain, severe light and sound sensitivity, severe worsening of symptoms are antibiotics, headaches, bone pain, stomach pain, severe jerking of limbs, severe encephalapathy, walk w/ cane, eye twiching, immune system problems, rib pain, chest pain, shortness of breath, very strange sensations in body, motion sickness, sleep disorder, thyroid problems, etc etc etc

While many people will say "many of those are also celiac disease or gluten related", I have been on boards for both celiac disease and lyme and I have much more in common w/ people w/ lyme in the way my symptoms cycle and some of the non celiac disease symptoms and my response to antibiiotics and my test for Lyme was highly positive and I do live in a very endemic region for it.

-Nancy

P.S. Sorry if I sounded defensive in that last paragragh, but there are many people out there that do not believe in late stage lyme and have told me it was other things before my diagnosis. Certainly, gluten is very bad for a person with lyme- they eat it like candy and as we know, gluten adds to the inflammatory response and Lyme disease is a systemic inflammatory disease, possibly mediated by the autoimmune system.

[danikali]

Wow! You actually do have several symptoms I have! Maybe I should get tested for lyme...........except, I think I might have been (I will know in a few days, but someone also told me it is very likely to get a false negative with that test. Do you know anything about that?

I actually have like EVERY symptom you have, except mine has been going on pretty much on and off my whole life......... so I don't know.......

But it's interesting that you have to stay away from gluten as well. It sounds like you have a GREAT doctor because every doctor I have been to has never brought it up and if I do, they laugh at me! The only way I first heard of it was from a nutritionist/naturopath!

[healthwarrior]

Wow! You actually do have several symptoms I have! Maybe I should get tested for lyme...........except, I think I might have been (I will know in a few days, but someone also told me it is very likely to get a false negative with that test. Do you know anything about that?

I actually have like EVERY symptom you have, except mine has been going on pretty much on and off my whole life......... so I don't know.......

But it's interesting that you have to stay away from gluten as well. It sounds like you have a GREAT doctor because every doctor I have been to has never brought it up and if I do, they laugh at me!  The only way I first heard of it was from a nutritionist/naturopath!

<{POST_SNAPBACK}>

I should have clarified....... my symptoms have come on and off but when I went on antibiotics for the lyme... they all came at once. And, I can't get into this too much, but testing for lyme is very inaccurate and lyme is a clinical diagnosis... meaning you can still have it despite negative testing. Who knows, maybe people w/ celiac disease have all these symptoms,,,, maybe I just haven't spoken to enough. Curious at to why you think possibly lyme.

[healthwarrior]

I should have clarified....... my symptoms have come on and off but when I went on antibiotics for the lyme... they all came at once.  And, I can't get into this too  much, but testing for lyme is very inaccurate and lyme is a clinical diagnosis... meaning you can still have it despite negative testing.  Who knows, maybe people w/ celiac disease have all these symptoms,,,, maybe I just haven't spoken to enough.  Curious at to why you think possibly lyme.

<{POST_SNAPBACK}>

also forgot to mention...... best testing lab for lyme is Igenex.... most regular labs get false negative results.

[danikali]

I wasn't thinking it at all...but someone brought it up to me because I was wondering why my symptoms seem to come and go.......when I was "mostly" gluten free for a while I would get HUGE flare ups where I would feel like I had the flu, but it would happen every 4-6 weeks and then go away. My whole body aches, I can barley walk from the bed to the sofa (in the next room), I feel like fainting when I stand for too long, I get black-outs, etc................but the only thing is when I'm not having a flare up, I still get little things like knee pains, leg cramps, weird headaches, fatigue, etc.

Anyway, that's what I was thinking.........so maybe I should get tested just in case? Does this sound similar to you or no? Sorry I'm not helping you much.....I'm asking you more questions and haven't answered any of yours!

[kabowman]

I have very similar lyme symptoms, some are less severe and also lichen sclorosis which the doc is pretty sure is a symptom (and it joins in on the rest when I start to slide back) and have a clinical dx of lyme disease. My actual tests have been negative.

I was on plain penicilian, 500mg 3X daily because of all my food issues but after 5 months everything started to come back and when I was not as regular (like forgetting my lunch dose so taking that when I get home then taking my next dose at bedtime), well, that was much less effective. Anyway, the doc switched my meds and I am back to being better again. At least for now. I have some energy and can get some stuff accomplished. I am settling back in and having more problems but it isn't as bad as it was. I am now on doxy.

I have been trying to find out what is wrong with me for over a year but when I started to feel better, thanks to a doc who was willing to try, based on all my bizare and difficult to dx symptoms, I realized that my problems have been going on much longer, they were just getting so bad I couldn't cope; I was going to have to quit my job.

[RiceGuy]

Wow!

I can't hardly believe how many symptoms I relate to in this discussion. Makes me wonder just what I may be overlooking, if anything.

I do know there is quite a bit of misdiagnosis going on though, and many illnesses are just not well understood. I would not be surprized if one leads to or promotes another, and that several are directly related. We do have to keep in mind to treat the body as a whole, not as seporate and distinct pieces. Western medicine hasn't embraced the same ideology as other parts of the world.

Sorry if I can't help you directly, only to add to the general consensus that lyme disease and gluten intolerance are probably more related and/or effect each other than is currently understood.

[tony]

How about an update Healthwarrior.

I have celiac disease and my father has been diagnosed with lyme disease. I try all the time to convince him that he should go gluten free for a few months but he is entirely convinced he has lyme and not celiac and won't do it. Best I could get him to do was three days.

[healthwarrior]

How about an update Healthwarrior.

I have celiac disease and my father has been diagnosed with lyme disease. I try all the time to convince him that he should go gluten free for a few months but he is entirely convinced he has lyme and not celiac and won't do it. Best I could get him to do was three days.

Well, it could be possible he has celiac, but also possible that he DOES have lyme, however they are finding that gluten free significantly reduces lyme symptoms since, just like carbs, the lyme bacteria feed on gluten and it also influences the autoimmune response, which is often involved in late stage lyme disease.

[tony]

Well, it could be possible he has celiac, but also possible that he DOES have lyme, however they are finding that gluten free significantly reduces lyme symptoms since, just like carbs, the lyme bacteria feed on gluten and it also influences the autoimmune response, which is often involved in late stage lyme disease.

Do you have any links to published research along these lines? Thanks!

[NYCisTHEplaceTObe]

my best friend since i was little has late-stage lyme too. i think people are fools if they don't believe in it! i have seen her go to hell and back several time with the disease. there were points were she was in a wheelchair and couldn't even walk and people still thought she was a nut! anyway, she was told to try a gluten free diet several years ago. in the end she decided not to do it for several reasons. however, one of my mom's friends has lyme and she tried it and it did aleviate a lot of her symptoms. it may be worth a shot anyway. i also live in an area where it is EVERYWHERE! i was tested for it at one point b/c i live in a very wooded area. it came back negative at that time tho, it turns out that it was mono.

[tony]

I'm still trying to find some sort of studies or references about a link between lyme and gluten. If anybody has any links they would be appreciated.

[Jen H]

Hi Healthwarrior,

I was just diagnosed with Lyme a few days ago. I'm trying to find out as much information about it as I can. Can you recommend a good website and the name of the forum you joined?

Thanks so much.