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Celiac's Or Undiagnosed Lyme? Candida? Both?


tailz

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tailz Apprentice

I'm not the only one who thinks this is too coincidental. I have a hunch that all of us with so called food "allergies"...MS? Lupus? Rheumatoid Arthritis? Muscular Dystrophy? Myasthenia Gravis? Sjogren's Syndrome? Chronic Fatigue? Irritable Bowel? ADHD? Schitzophrenia?...are really walking around with some sort of systemic infection. At first I was thinking candidiasis, and that may still be a part of this. But I read so many posts on the Lyme Disease forum about people who had gone undiagnosed for years only bacause they had not developed the "classic" bull's eye rash of Lyme to alert their doctors. One woman had actually walked around for 20 years thinking she had MS.

Look at the maps and the graph. Autoimmune disease, neuromuscular disease, food allergies are all on the rise. I'd be curious to have a breakdown of each "disease" to see how they correspond with the maps and graph. I know my symptoms began around this time. Makes me wonder. I have Rinne to thank for tipping me off...

Lyme Disease (Info, Map, Graph)...not thrilled with how they diss testing you unless you present enough symptoms or how they diss alternative therapies while recommending you wait until you have *enough* symptoms, but some good info:

Open Original Shared Link

Lyme Disease Risk Map:

Open Original Shared Link

More Info on Lyme Disease:

Open Original Shared Link

Lyme Forum

Open Original Shared Link


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eKatherine Apprentice
Look at the maps and the graph. Autoimmune disease, neuromuscular disease, food allergies are all on the rise. I'd be curious to have a breakdown of each "disease" to see how they correspond with the maps and graph. I know my symptoms began around this time. Makes me wonder. I have Rinne to thank for tipping me off...

MS is known to be related to geography, but distribution of cases appears nothing like Lyme.

Open Original Shared Link

My understanding is that Lyme is found in North America, but not in Europe. The incidence of celiac is estimated to be the same in North America and Europe.

eKatherine Apprentice

You asked to see a map, and I showed you one that demonstrates that there is no geographical similarity between the distribution of cases of Lyme and MS. If you want to see Western Blot Lyme test results from all the MS patients in the world, you'd better start raising money for that study now yourself, because nobody is going to do that for you.

rinne Apprentice

Open Original Shared Link

Thanks for starting this topic. can't post now but will be back later, I just wanted to respond to the Lyme in America statement.

ravenwoodglass Mentor

"I have a hunch that all of us with so called food "allergies"...MS? Lupus? Rheumatoid Arthritis? Muscular Dystrophy? Myasthenia Gravis? Sjogren's Syndrome? Chronic Fatigue? Irritable Bowel? ADHD? Schitzophrenia?...are really walking around with some sort of systemic infection. "

Out of these I was thought to have at one time or another and depending on the doctor I saw

MS

RA

SS

CFS

IBS -IBD

ADHD

and although it is not in your list

Depression

Fibro

For me all were connected to nothing other than gluten. It took a long time but except for residual nerve damage (ataxia) I am in complete remission from all. I did have to become a fanatic when it came to searching out gluten sources and I do avoid ALL possible sources of CC. Those CYA statements that so many companies put out are usually listened to by me. I regret it when I don't.

rinne Apprentice

Open Original Shared Link

Lyme Spirochete Found in the Brain of MS Patients

The causative organism of Lyme disease, Borrelia burgdorferi, has been found in the brains of many victims of multiple sclerosis (MS). The antibiotics minocycline, tinidazole, and hydroxychloroquine are reportedly capable of destroying both the spirochetal and cyst form of Bb. Because of this apparent correlation, it is proposed that double-blind clinical trials be performed to confirm this finding.17 (See Listing 5.)

Listing 5: Lyme Disease Linked to Four Major Diseases

Multiple Sclerosis, Alzheimer's, Systemic Scleroderma and Arthritis

ALZHEIMER'S

The spirochete Borrelia burgdorferi has been found in the brain of many Alzheimer patients. Also in the brain, antigens and genes of Bb have been co-localized with beta-amyloid deposits.

MULTIPLE SCLEROSIS

The spirochete Borrelia burgdorferi (Bb) has been found in the brain of many multiple sclerosis (MS) patients along with amyloid deposits. MS has been linked to Lyme disease both seasonally and by location.

SYSTEMIC SCLERODERMA

The spirochete Borrelia burgdorferi has been found in the blood in systemic scleroderma. Treatment with antibiotics effective against Bb returned the skin to normal.

LYME-INDUCED ARTHRITIS

Only certain strains of Bb are capable of causing the symptoms of arthritis.

© 2005 BRI

Ravenwoodglass I am glad that all of your symptoms have resolved on a gluten free diet. I found it interesting that all of the conditions you have listed overlap with problems that people with Lyme also have.

Out of these I was thought to have at one time or another and depending on the doctor I saw

MS

RA

SS

CFS

IBS -IBD

ADHD

and although it is not in your list

Depression

Fibro

I am clear that gluten is a problem for me and has been for a very long time, I am also clear that going gluten and dairy free has alleviated my symptoms about 50%. I know cross contamination is not an issue, I am eating only simple foods I prepare myself and have changed all my kitchen equipment, medications, etc. My digestion has improved, the malabsorption has diminished, and no constipation which is a first for me.

However, I am in pain and the other pain in my back is worse and seems to be wrapping round my stomach and causing pain. I have learned that RMSF attacks the tissue between the organs and I am wondering if that is the pain I am feeling in my abdominal region. I spent a lot of time in a remote place in Colorado where two friends were diagnosed with it. I have also had a rash, although it was not the typical bull's eye, and it has been since then that my health has started to deteriorate. I am also wondering about a rash and fever I had in California twenty years ago because other health problems began around that time. I have contacted IGeneX, a reliable lab for testing according to the Lyme Boards, and will follow up on testing. For anyone who is interested here is there address.

IGeneX, Inc.

795 San Antonio Rd., Palo Alto, CA 94303 USA

Tel. 650.424.1191 / 800.832.3200 Fax. 650.424.1196

In the meantime I have been using the Salt/Vitamin C protocol as a diagnostic tool and have had what appears to be two herxes.

I have been thinking alot about diagnosis and the difficulty of obtaining one and the dangers of receiving the wrong diagnosis. As an example, with the pain I am in and a family history of spondylosis it is quite possible that with a diagnosis of arthritis I would receive medication that would further the Lyme if it is Lyme and not arthritis. Also, if I am convinced the only thing wrong with me is food intolerances I could spend all my time and energy simply trying to modify my diet and miss the systemic nature of what is going wrong with me.

I think that these parasites have been with us for a very, very long time and that is was the shift in our diet to preserving food with sugar that changed the chemical balance in our bodies and made us into the ideal hosts for them. The Salt/Vitamin C treatment changes us so that we become an inhospitable host to them.

Lymetoo Contributor
Open Original Shared Link

Thanks for starting this topic. can't post now but will be back later, I just wanted to respond to the Lyme in America statement.

Yes, it's definitely in Europe. We have people on the lyme board from Europe. They have just as much trouble getting diagnosed there as in the states.

MS is known to be related to geography, but distribution of cases appears nothing like Lyme.

Open Original Shared Link

My understanding is that Lyme is found in North America, but not in Europe. The incidence of celiac is estimated to be the same in North America and Europe.

I think the map supports the relationship between Lyme and MS. Cases of LD are more prevalent exactly where the MS cases are, for the most part. I do know, for example, that West Africa has alot of Lyme cases. The MS map shows West Africa, Europe, northern US [mostly], Australia, etc.

.

One woman had actually walked around for 20 years thinking she had MS.

I"ve been on the LD board for 6 yrs now and that is not a rare occurence. We have quite a few who thought they had MS, only to find out years later that it was Lyme. The worst thing about that is that most MS patients are given steroids or other immune suppressing drugs, which make the LD go deeper. Then it's even more difficult to clear.

I believe I've had LD for 48 yrs and I wasn't dxd until 6 yrs ago. I had been treated with steroids and methotrexate by a rheumatologist. Thankfully, we moved away after about a yr of seeing this dr, and had we not moved, I'd still be sick and still taking harmful drugs like those.

Now, I'm feeling great and so happy to have been given a new lease on life.

By the way, I don't believe the rheumatologist or any other dr ever thought to test me for Lyme. I had several ask me if I'd had a rash, and I said No.... so end of discussion. They erroneously thought "no rash, no lyme." WRONG!


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ravenwoodglass Mentor

I find the similarity interesting also. Years ago when I had my first child and the celiac started to hit me heavily Lyme was one of the things I was tested for. And then again a few times in my last 5 years of illness so some doctors aren't totally clueless. I am very thankful that I did not turn out to have Lyme as I know it can be tough to get rid of.

Lymetoo Contributor
I find the similarity interesting also. Years ago when I had my first child and the celiac started to hit me heavily Lyme was one of the things I was tested for. And then again a few times in my last 5 years of illness so some doctors aren't totally clueless. I am very thankful that I did not turn out to have Lyme as I know it can be tough to get rid of.

HI there! If they test you again, be sure to ask them to test through Igenex labs in CA. [they won't want to do that, believe me!]

---------------------------------------------------

BTW.....Many with Lyme disease have candida [even before taking antibiotics] because Lyme suppresses the immune system, allowing the candida to take over.

rinne Apprentice
Now, I'm feeling great and so happy to have been given a new lease on life.

That is wonderful.

Lymetoo Contributor

here is more info:

Wild Condor's Links and information:

Open Original Shared Link

Johns Hopkins.... testing for Lyme inadequate

Open Original Shared Link

Katie O'Rourke Rookie

We do defnitely have lyme disease here in the UK, which is in Europe, though it is thought that you are only susceptible here if you come into contact with wild deer in countryside areas - two examples of this are Silverdale in the Lake District/North Lancashire and the Scottich highlands. i ahve been to both of these places, but supposedly if you check for ticks afterwards and dont have any then you shoudl be fine. however, i had coeliac disease before i went to these areas and had not been to vulnerable areas before being diagnosed as coeliac. just a thought.....

Nancym Enthusiast

Rinne, I've been diagnosed recently with akylosing spondylitis but now I'm wondering about Lyme. I went through a check list of symptoms and I have a lot of them. Let me know what you find out about the testing! I'm going to bring it up with my MD when I see him, but I have a feeling it might not get taken seriously.

nikki-uk Enthusiast

Is there a cure for Lyme Disease??

mle-ii Explorer
It usually is treated with long term antibiotics. Many people have other tick-related coinfections. Most Infectious Disease doctors think they can cure it with 4 weeks of antibiotics. This is NOT true. You need to see a Lyme Specialist. I'm going to get tested by IGeneX labs. They will send you a test kit for free which you can take to a Lyme Specialist.

Given that they think that antibiotics may have lead some folks to start getting ill. Are there any "natural" antibiotics or antifungal foods/supplements or whatever? The human body has done pretty darn well to survive for so long that one would think there were better ways of taking care of this than killing off bacterias that are normal in the gut flora.

ravenwoodglass Mentor
Ravenwoodglass, you could still have LYME even though you tested "negative". I tested "negative" several times (ELISA), but I'm getting retested. It doesn't always show up on ELISA. Sometimes it doesn't show on a Western Blot. MOST people do not get the classic bull's eye or remember any rash. Your doc should consider it by symptoms (see link below). I saw too many people on here and the MS forum, complaining about the same symptoms. And too many people on the MS forum had been later dx'd with Lyme. Remember, most of these people did not wake up one day with full-blown "MS" or "Lupus". It was a gradual sequence of symptoms.

In the early stages of the healing process I might have looked into this. However after 6 months to a year I had no issues, unless glutened. It would be a good idea to rule out though for folks that continue to have problems after an extended period of gluten free living.

Lymetoo Contributor

Cure?? We in the Lyme community don't use that word. After years of suffering, we realize that it's "always going to be there". I'm feeling VERY WELL after 4-6 yrs of treatment. I took 4+ yrs of antibiotics....was totally miserable the entire time.

Now I'm doing great, thanks to some natural supplement which have boosted my immune system and eliminated alot of my pain and fatigue. I'm hoping that going gluten free will help with both of those as well!!

If you ever get bitten by a tick....take action. You WON'T always get a rash. I never did.

Go here for more information:

Open Original Shared Link You can ask questions on the "flash discussion" board.

Wild Condor's Links and information:

Open Original Shared Link

rinne Apprentice
Please get tested, Nancy. I just saw the doctor Friday, and he is pretty sure I have Lyme and at the very least Bartonella.

I second that Nancy, and check out the symptom list for Lyme, you'll have a sense of whether it fits for you.

And I'm glad to know your doctor is testing you. My doctor literally threw her hands up in the air when I saw her yesterday, she said and I quote, "I'll refer you to an infectious disease specialist and then I'm done, none of your tests show anything wrong." Wow, I am glad I am not a vulnerable person at least to that kind of bull****. I get her frustration with me, I actually want to know what is wrong, I will not just take pills to stop feeling bad, I ask for more than seven minutes of her time. She said when I brought up Lyme and my experience in Colorado that she didn't think it could be Lyme, I didn't have the symptoms. :angry: When I saw her in January she wrote out a prescription for Ome-prazole and when I saw her again in June because she called me in she never even asked if it has helped. She is an idiot and I am an idiot for spending my time with her. I must find another Doctor.

I have been using the salt/c protocol for 4 weeks now, I am taking 1/4 teaspoon salt and 1/4 teaspoon Vitamin C three times a day in a large glass of water. I saw a naturapath on Thursday and my blood pressure is normal, the last time it was checked it was low and the naturapath was fine with my taking the salt/c. Funny, when I brought up Lyme he asked if I had seen an article in a health magazine about him treating someone with Lyme. No, but now I am looking for it. I love those fortuitousness moments.

As I have looked further into Lyme I am learning that an estimated 25 million Americans suffer from parasites and that they can also do real damage. The great thing about the salt/c is that it wipes these critters out too.

  • 1 month later...
CantEvenEatRice Enthusiast

I am definitely interested in learning more about Lyme treatment. I was diagnosed with Celiac and then with Lyme. I spent 6 months on iv antibiotics, but I still do not feel that great. I have tons of food intolerances and I cannot figure out if most of my problems are due to Celiac or to Lyme. What other treatments are available besides antibiotics? I would hate to have to go back on them.

GFBetsy Rookie

Check out the "OMG" thread . . . Rachel - 24 and Rinne have both been diagnosed with Lyme recently, so there is more discussion about this in that thread. (The last 20 or 30 pages or so :D )

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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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