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The Lyme Disease Thread
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I just went over and looked at your symptoms .... the salad thing was the same for me. I could eat no raw food, not fruit or veggies. In fact, at my worst, everything went through the blender or I got terrible cramps. I was digesting little. I am getting better with raw foods because I have worked on rebuilding the good bacteria in my gut now that the bad stuff and parasites are gone, but I still get cramps if I eat too much salad .... I stick to side salads, it can't be a meal. Other than that, I'm symptom-free .... I came a long way from being bedridden/housebound.

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I just went over and looked at your symptoms .... the salad thing was the same for me. I could eat no raw food, not fruit or veggies. In fact, at my worst, everything went through the blender or I got terrible cramps. I was digesting little. I am getting better with raw foods because I have worked on rebuilding the good bacteria in my gut now that the bad stuff and parasites are gone, but I still get cramps if I eat too much salad .... I stick to side salads, it can't be a meal. Other than that, I'm symptom-free .... I came a long way from being bedridden/housebound.

Thank you very much. I've been perusing that site. A lot of this makes sense. I can relate to so many of the symptoms on here. Although so many of these symptoms are the same for so many different things, I feel like this may be shedding a bit more light on what I'm going thru. Honestly, I kinda scares me, but I can't really ignore it any longer.

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Thank you very much. I've been perusing that site. A lot of this makes sense. I can relate to so many of the symptoms on here. Although so many of these symptoms are the same for so many different things, I feel like this may be shedding a bit more light on what I'm going thru. Honestly, I kinda scares me, but I can't really ignore it any longer.

We talked over there .... I don't use that name here or this name there ... :)

You may want to look into parasites, too. When the body gets weakened, you get opportunistic infections that healthy people can fight off. That is probably why so many systemic diseases have the same/similar symptoms.

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My mom and I were wondering if there was a correlation between Celiac and Lyme Disease. I was diagnosed with Lyme Disease in the fall of 2001, right after Sept 11. I had been to a rural part of New Jersey in August and was staying in a nasty bug and animal infested house. As soon as I got back to Nebraska (where I lived at the time), I felt awful. Main symptoms were extreme fatigue, bad headaches, dizziness, body aches and weakness. I remember that it felt like a real effort to walk from one end of the room to another. I was immediately suspect (when I was in New jersey, everyone was talking about Lyme Disease and how prevelant it was there). I got tested and sure enough it was Lyme. The strange thing is, I had no rash and I never knew where I was bitten. I'm guessing I was probably bitten through the hair on my head while I was sleeping in that disgusting house (and this was the house that they put the teachers to stay in! I can't imagine what horrible places the students must have stayed in). I was put on 1 month of strong antibiotics. It took several months for me to feel well again. There were days I felt just fine and others where I felt pretty bad. The annoying thing was that I got very little sympathy from others. Most people said I looked just fine so they didn't get it that I felt horrible. Also, it's not very common in Nebraska and many people were pretty ignorant about it.

In May 2010, I was diagnosed with Celiac disease. I've had similar symptoms as Lyme disease, but not as severe. Mainly just fatigued all the time, insomnia, some headaches and sinus aches. But I wonder if I had Celiac disease already when I got the Lyme disease back in 2001. Or if the Lyme Disease actually triggered the Celiac. I guess I will never know. But it is interesting how a lot of people with Celiac have had Lyme disease as well.

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The Lyme can be a trigger for the celiac just like any stressor can.

Mainstream medicine will only treat Lyme for a month, but often it requires longer treatment. Also, it's considered remission when you are feeling better, so if you're feeling bad now, you may need more Lyme treatment. Testing won't show if the disease is active or not, only exposure, so unfortunately, there isn't a blood test that can show you whether your Lyme is active again.

There are herbs you can take if you don't care to go back on antibiotic treatment, which is hard on the gut, especially since you're already fighting celiac.

Interestingly, I was first thought to have celiac disease. Then the testing came out negative, but I had improvement on the gluten-free diet. Then the improvement stopped and I backslid. Eventually I discovered I had Lyme Disease and with treatment the gluten intolerance went away ..... that wouldn't happen with celiac. It's just interesting.

I still cook a lot of gluten-free meals .... after two years of no gluten, it becomes habit and I find I like them better.

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after a couple years, i am miserable and cannot figure out what is bothering me. i feel like im worse than before i began treatment. it could be the antibiotic...and dr suggested i could try taking them through a shot once a week (thus to avoid my digestive system, which creates problems with most abx that I have tried).........

i was wondering if this is common: that the ~only~ antibiotic that works actually stops working?

thanks in advance,

Scotty

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Hi,

I'm new to this board and I'm happy to see there so much support and information from it!

I have a question, if anyone would happen to know it.

My sister has had peripheral neuropathy (burning/tingling/vibration in hands/feet and other places) for ~2years, and recently, she did the Igenex test.

Here were the results:

IGM:

31 ++

41 IND

83-93 IND

Rest negative

IGG:

30 +

39 IND

41 ++

Rest negative

CD57 Count: 37

The above doesn't classify as a true positive, but I was wondering if people had some thoughts/insight into the above results?

Thank-you.

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This is a very interesting thread. I've been gluten free for almost five years (self diagnosed) and staying off gluten seems to improve my immune system. Two years ago I was tested for lyme disease, and the test was negative, so I was happy (not knowing anything about how difficult it is to test for lyme disease). But my doctor did notice a very low IgM value, and several other tests later still showing IgM deficiency.

As I understand it, an IgM deficiency can be an indication of an autoimmune disease, so I suggested to my doctor, that he did a celiac test. A couple of months ago I prepared for the test doing a four weeks gluten challenge. My ttg blood test was negative, but my symptoms suggested a non celiac gluten sensitivity. Good to know, and easy for me to return to my gluten free diet. But my symptoms would not go away again, and they got worse after a tick bite. I did not get the bullseye rash, but symptoms were felt while the tick was sucking blood from my leg. I have almost always lived in a high risk area, and have had hundreds of tick bites before this one. The ELISA test for lyme disease is now positive.

The interesting thought is, did I get lyme disease because gluten had weakened my immune system, or am I gluten intolerant because I have lyme disease? I am currently doing a three weeks doxycycline treatment, and if it helps, I am willing to try to eat gluten again.

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Hi,

I'm new to this board and I'm happy to see there so much support and information from it!

I have a question, if anyone would happen to know it.

My sister has had peripheral neuropathy (burning/tingling/vibration in hands/feet and other places) for ~2years, and recently, she did the Igenex test.

Here were the results:

IGM:

31 ++

41 IND

83-93 IND

Rest negative

IGG:

30 +

39 IND

41 ++

Rest negative

CD57 Count: 37

The above doesn't classify as a true positive, but I was wondering if people had some thoughts/insight into the above results?

Thank-you.

With symptoms I would bet a lyme doctor would give a diagnosis based on this test. It's a clinical diagnosis. Bands 30 and 31 can actually be retested to clarify whether it's positive from Lyme or from cross-reactivity.

This is a very interesting thread. I've been gluten free for almost five years (self diagnosed) and staying off gluten seems to improve my immune system. Two years ago I was tested for lyme disease, and the test was negative, so I was happy (not knowing anything about how difficult it is to test for lyme disease). But my doctor did notice a very low IgM value, and several other tests later still showing IgM deficiency.

As I understand it, an IgM deficiency can be an indication of an autoimmune disease, so I suggested to my doctor, that he did a celiac test. A couple of months ago I prepared for the test doing a four weeks gluten challenge. My ttg blood test was negative, but my symptoms suggested a non celiac gluten sensitivity. Good to know, and easy for me to return to my gluten free diet. But my symptoms would not go away again, and they got worse after a tick bite. I did not get the bullseye rash, but symptoms were felt while the tick was sucking blood from my leg. I have almost always lived in a high risk area, and have had hundreds of tick bites before this one. The ELISA test for lyme disease is now positive.

The interesting thought is, did I get lyme disease because gluten had weakened my immune system, or am I gluten intolerant because I have lyme disease? I am currently doing a three weeks doxycycline treatment, and if it helps, I am willing to try to eat gluten again.

I would bet gluten sentivity as a result of Lyme. Once I treated Lyme, my gluten sensitivity went away.

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June/July 2001, during a time when I was working in the woods and doing a lot of biking on various trails, I developed a bullseye rash, then fever. Since I had minimal health insurance then, I went to a college health clinic and was told it was not lyme. They gave me a course of ammoxicillin for whatever the infection was. I took a dose and quickly spiked a much higher fever and stronger symptoms (herx, anyone?). They changed my antibiotic to augmentin, I improved enough, continued to wonder if it had been Lyme, but couldn't do anything about it, so hoped for the best.

After a few years of going to doctors for ongoing fatigue and other vague symptoms (and being told "as you get older sometimes you have less energy." At the age of 24.) someone finally tested me for Lyme, and it was positive. I ended up with a LLMD, and went through years of treatment without major improvement. I finally decided that I probably just had residual damage from the Lyme, and that I just had to deal with it. Last spring, after a year of increasing GI trouble and ridiculous pain and fatigue, I eliminated gluten. My dad has celiac, so it seemed like a logical thing to try even though my blood tests were negative. It was the first thing in 10 years that really made a difference (other than IV rocephin, which my insurance stopped covering, leading to a return of symptoms). I figured maybe a good bit of the stuff I'd attributed to Lyme was actually gluten related.

I'm still up and down a lot, especially with the return to the school year. I've been wondering if there are other intolerances going on, and now that I've read bits of this thread, I wonder if Lyme is still a player. How does one even begin to sort all of this out?

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I had a bout of Lyme disease back in 2001. I caught it pretty early on and took 1 month of powerful antibiotics. My symptoms did not return.

I was diagnosed with Celiac Disease in May 2010. I've been on the gluten-free diet ever since.

Fast forward 1 1/2 years later to Oct 2011. I've continued to have very elevated antibodies despite being on the gluten-free diet for 1 1/2 years. The doctor is not sure why I'm not responding to the gluten-free diet and making any progress. I will be going to get a second endoscopy in a few weeks to investigate this matter further.

But now I'm wondering if I could still be having issues with Lyme disease? Is it possible to have blunted villi and high antibodies with Lyme disease as well? Maybe I don't even have celiac disease at all? I'm so confused now. Any imput would be greatly appreciated.

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Has anyone here tried Venus Fly Trap and Dr Wise's Cat's Claw?

Lyme disease is apparently ridiculously common and can manifest itself as MS, Rheumatoid Arthritis and other autoimmune diseases. May be present in up to 1 in 15 people. Jason just uploaded a factual video on this (I think it was recently) which I thought you'd like to see:

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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