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Misdiagnosed lyme, figured it out and now im freee!

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Posted 9/8/2011 5:41 AM (GMT 0)
Hi, my name is Tracy. For 12 years I was in a litteral HELL! I suffered with Chronic fatigue, brain fog, memory problems, joint pain, panic attacks, leg jerks, shortness of breath, blurred vision, vertigo, dizziness, sleep paralasis, mild sleep apnea, muscle weakness, ow blood sugar, mood swings, phobias,etc.

I searched online constantly and must have visited over 20 DR.s and had testing upon testing to figure out was wrong with me, of course I usually got what alot on here got "Its all in your head." :P

Then I read about lymes disease and i went ah ha, these people have ALL the symptoms I myself have suffered with and I knew I had been bitten by a tick on the scalp when I was a child. So I got a test done. Lyme titer came back positive and western blot only showed 40 or the 41kd band and one other band so was determined to be an indeterminent Western Blot. Dr. was unsure if I really had it or not due to this but treated me with a month of IV Rocephen as well as follow up abx. I did not get better, so once again it was all in my head.

Finally on a whim, because my kids were a bit underweight, I had my two children tested for Celiac Disease, an auto immune disease against Gluten ie..wheat/barley/rye/spelt/kamut/n often oats. One tested positive the other just under the cut off. So I tested and myself just under the cut off. However Celiac is genetic and their father perfectly healthy his whole life so being sick as I was and knowing my father bloated terribly eating breads etc. I was sure I was actually positive. The test is only 75% accurate in the first place.

So after going gluten free my symptoms began to melt away. The sever panic attacks I had had for over 17 years *POOF* disappeared, the fatigue, brain fog, joint pain and all the symptoms slowly began to lift as well. I was released from a nightmarish prison.

I know not everyone here with negative lymes test, or positive tests have Celiac as I do, however I am CERTAIN there are a few who do and if I can help just ONE person be free from prison? Well thats why I am writting this.

One thing though, if you are diagnosed positive or close to positive (ask for the test values!) it is HARD to get out all gluten and people who THINK they are eating gluten free and see no results thus giving up, may have missed their chance for freedom. Gluten is in so many food people do not realize!

Even crosscontamination will keep a Celiac sick, meaning if you are eating something like lays potatoe chips that have no gluten ingrediant you will still get 100-3000 ppm of gluten simply because the product ran across the same belt. IT ONLY TAKES 50ppm to KEEP you sick! So do the research and find out how to go TRULY Gluten Free, not even ONE bite intentionally.

Also most DO go through detox so to speak and you often get sicker the first 1-3 months before you get better.

Celiac is often diagnose easily when you have the typical symptoms...bloating, gas, diahrea, but some of us dont ever present with these symptoms.

If anyone has any questions please feel free to write me anytime. [email protected]

I pray at least one person who actually has Celiac Disease passes by this thread and reads it finding freedom from prison as I have. <3

God Bless!!!
Tracy

Post Edited (bethlany889) : 9/7/2011 11:59:49 PM (GMT-6)

Posted 9/8/2011 5:51 AM (GMT 0)
Also, what I thought at the time beingt "die off" sickies from lymes while on antibiotics, was actually due to the fact that many abx are NOT gluten free AND antibiotics causing yeast to grow will make a celiac sick. They believe this is because the body often recognized candida/yeast as a similar substance to gluten thus making you sick and symptomatic. just a fyi ;)
Posted 9/8/2011 6:10 AM (GMT 0)
For all it is a bit different. For most if you have TRULY been eating gluten free, thus improving in health over time and it can take months to years for 100% recovery, and the you eat Gluten you will or at least should notice the effects.

For me when I get crosscontaminated or accidently ingest gluten I notice the effect anywhere from immediately to the next day. Many celiacs will immediately bloat, or have gas/diahrea but alot of us just have the neuro symptoms and dont. Ingesting gluten will then set off your immune system response for a couple weeks. Gluten flattens the villa in a Celiacs bowels preventing proper absorbtion of nutrients thus causing the neuro symptoms and setting off the immune system it kinda starts attacking the body in other ways.

I know what your saying about poor testing. 1 in 100 test positive for Celiac and the test is only 75% and most people who ARE sick with Celiac and dont know it and NEVER get tested, so that makes you wonder how many people really DO have the disease. The poor testing leaves us all confused and sick not knowing how to heal our selves.

Its imperative that we be vigilant about our own health and request the testing that IS available for all diseases that fit our syptoms and THEN find out how accurate the testing is and what our actual test scores where because you know how dr.s are....if the test says negative even though you are right up to the line, they will just say "YUP your negative." Silly Dr.s and Dr.s are SO uneducated about Celiac and Lyme, and MANY other diseases, guess thats why they are "practicing"

Post Edited (bethlany889) : 9/8/2011 12:21:03 AM (GMT-6)

Posted 9/8/2011 7:54 AM (GMT 0)
Hard to tell as we all are different in our body's response. Ive known celiacs who have had upper and lower bowl edoscopy and both tested negative for celiac, though the diet changed their health completely. Maybe didnt look in the right spot? Who knows?

I guess all we can do is give any reasonably logically treatment a chance. I tell people who complain of similar ills and have no diagnosis to try gluten free, and do it by the book strictly. If after a few months or so you notice no difference then that is one more than you can fairly surely rule out. It never hurts to try things that have no negative impact, such as the gf diet, hell even trying things that could have negative effects is worth it to some who live in chronic sickness hell if it gives them even a 1% chance of escape and healing.

Breaks my heart to see and know of all the needless suffering to goes on....
Posted 9/8/2011 11:03 AM (GMT 0)
My mother is Celiac and had been following this diet fro over a decade now. She is severely allergic to it, if she touches something with gluten in it her hands will blister and she gets severe GI distress for days. Needless to say, our family has learned how to handle and cook for her. It is easier than you think to eat gluten free. There is a lot more mainstream knowledge of it now than there ever was. And, bonus! you can order everything online that you need. I love the gluten free mixes and flours. Want pasta? yup, you can get that too. I have heard that gluten stays in the body for 15 days after consumption and can make you sick, so you need to be eating strictly for at least a couple of months to see positive changes.

I actually plan on going completely grain free over the next few months. A book worth reading on the effects of grain in our system is The Primal Blueprint by Mark Sisson. Grains cause inflammation within our cells and can cause a whole host of problems.
Posted 9/8/2011 2:17 PM (GMT 0)
Hi Bethlany,
Welcome to our forum! I'm really happy for you that you found out what was really going on with your body. As you said, not everyone who has the symptoms of a tick-borne infection (TBI) has one - that is why we strongly recommend that people be checked out by a Lyme Literate Medical Doctor (LLMD). These docs would not risk their license if they had any idea that the patient wasn't really infected with a TBI, but had something else going on.

I do want to thank you though for joining us, and posting your experiences. Most of us could all probably learn a thing or two.

I do have to say though that not every person has a bad reaction to gluten, nor is that all that's wrong with us. There are an amazing amount of those diagnosed with Lyme and other tick-borne infections that become gluten sensitive, just like there are plenty who end up with arthritis of some type.

Also, Lyme is known to 'set off' auto-immune issues in some.
Posted 9/8/2011 4:55 PM (GMT 0)
I agree, Gluten is fine for most people in general, and I know just because I have Celiac doesnt mean others here do. However being there is a chance that someone MAY actually have Celiac and not Lyme, as I did, I just wanted to put it out there in hopes that I could possibly help someone escape this hell we have experience or deal with daily.

I use to visit this and other sites when I thought I had lyme, wish I would have known to at least check for Celiac back then, especially seeing i didnt have a fully positive lyme test, like it matters though right lol.....

The body is often such a mystery, and I just hope one day we ALL here can find our healing. Often I feel a bit of guilt that Im well now and others here and everywhere are suffering like I use to and worse... The medical community is so uneducated about lyme, celiac, etc. and it breaks my heart to see what is often needless suffering. So I started posting a little here n there in the hopes that someone somewhere who actually does have what i have might find healing and freedom. Wish so much we had an answer and healing for all...

Post Edited (bethlany889) : 9/8/2011 11:05:08 AM (GMT-6)

Posted 9/8/2011 5:03 PM (GMT 0)
Lymester. The diet is certainly a pain at first, but once you get it down its pretty easy. If you ever want to try it you can write me and ide be more than glad to help out meal plan/shopping list and such. Not sure if it would make a difference for you though or not. You may not have any issues with gluten at all. A couple ways to find out though. Testing and diet. Trial and error in all directions is what many of us do until we find even a sliver of relief, or for the lucky few an actualy healing breakthrough...
Posted 9/8/2011 5:10 PM (GMT 0)
Bethany, thank you for very interesting thread.
I'm a little mixed up around the testing and are you saying you
did have lyme all these years or that it was all celiac disease?

When you were pregnant with your children what was your health like then?

Did the children inherit lyme related conditions
or did they inherit celiac?

or is celiac a lyme related condition?

Do any of your children have any ADD or ADHD or OCD type stuff going on?
if so did this change with gluten free diets?

congratulations on your break through and keep sharing your discoveries.
So many children are having problems with gluten and have no clue.
Posted 9/8/2011 5:55 PM (GMT 0)
Bucci... I had a positive lyme titer once, however that could have been positive due to another spirochete bateria other than lymes, my western blot didnt show actual positve for lyme, and being that the treatment for Celiac reversed my symptoms I am fairly sure I never had lymes at all, just Celiac Disease.

When I was pregnant I was pretty much just as sick, I actually had the major onset of full blow symptoms 2 months into my 2nd pregnancy.

My children inherited Celiac, well 2 of the 4 did. My daughter, who had no sypmtoms other than being short and thin like me, was the one who actually tested off the charts positive. My son who started having some symptoms like spaciness, tested just under to border at 15...17 and above being positive, just as I did. Funny that the non symptomatic one was the one to test accurately positive.

My son wasnt ADD, just forgetful and spacey, however my two sister who now know they have it.... One had ADD and the other Bi-polar manic, which is treatable with the diet. It is well know by Celiacs that ADD ADHA OCD, anxiety, depression, schitzophrinia, bipolar, and other mental ills are often caused by Celiac Disease/Gluten intolerance and usually cured or minimized with the GF diet if you do indeed have celiac.

Celiac and lyme are two totally different things, one a bacteria...lyme..the other a genetic autoimmune disease, however as Traveler stated above, lyme can trigger autoimmune diseases like celiac in some.

My panic disorder and sever phobia and attention problems went away, and my sons mild issues went away as well. Both my sisters who are positive as well have bipolar, panic, and mild schitzophrinia from the disease, however neither one of them care enough to eat the right diet and they are still sick :( They didnt have all the other symptoms I did so i guess they dont feel tormented enough as I did to give it a try? I duno anywho...

Thanks for writting! ;) Bless you!

Post Edited (bethlany889) : 9/8/2011 12:01:53 PM (GMT-6)

Posted 9/8/2011 6:06 PM (GMT 0)
PS about the testing. The most common blood test that moster dr. give only tests for the antibodies against gluten....and its only 75% accurate, go figure! The genetic test for Celiac is suppose to be accurate, and the bowel endoscopy is usually more accurate than the basic blood test, though often not accurate either.... :-(

The only thing that ever showed on my numberous testings and blood work, other than the one positive lyme titer, was that I had slightly low iron, and low vitamin D. All other tests said I was perfectly healthy, though I felt at deaths door every day for over 12 years.
Posted 9/8/2011 7:24 PM (GMT 0)
Check out http://www.theglutenfile.com/ for more info on Celiac and non-Celiac Gluten Sensitivity.

Estimates say that as much as 40-60% of the population may have non-Celiac Gluten Sensitivity (NCGS). NCGS is not detectable on biopsy but may show up on an Enterolab.com stool test and genetically has some associations to a few different genes - see http://www.enterolab.com/ for more info.

Lyme can trigger autoimmunity, can trigger NCGS, and can also trigger true food allergies. And many LLMD's recommend a gluten & casein-free diet to their patients because of the pro-inflammatory nature of the gluten & caseine proteins in the body - even in those who do not have NCGS or Celiac or any allergy to milk or wheat/gluten grains.
Posted 9/8/2011 7:50 PM (GMT 0)
Great info Razzle!
Posted 9/8/2011 8:34 PM (GMT 0)
I do agree with you Bethlany!
We need to have access to as much info as we can, so thank you for posting here to help us at least understand about gluten sensitivity better! smilewinkgrin
Posted 9/8/2011 8:38 PM (GMT 0)
I keep looking for the "like" button on these forums to like the previous post, like facebook lol ..... anyway thanks Traveler, being a moderator you touch many peoples lives. ;)
Posted 9/8/2011 8:45 PM (GMT 0)
Beth, can I ask what country your ancestors are from?

My Grand parents are Italian on one side and Irish on the other.

I was told that 30% of Italy is gluten intollerant and that Italy is one of the easier places to find gluten free food and they prepare it in many resturants
because so many Italians have this condition.
Posted 9/8/2011 8:54 PM (GMT 0)
LOL! Yep! a "like" button would be nice at times!

Thank you for your kind words - I always hope that I am touching lives in a good way.
Posted 9/8/2011 9:49 PM (GMT 0)
Bucci...im a hienze 57 in order of decent...German, Indian, Italian, Irish and who knows what else? lol

I too have heard it is prevelant in italy, but perhaps that is because every one in Italy is tested for Celiac Disease in early childhood, so they are aware of just how many people truly DO have Celiac, unlike America who seems to care little about preventative measures in lue of keeping the phamiceutical companies in business with all of us being sick and misdiagnosed! ;)
Posted 9/9/2011 12:15 PM (GMT 0)
Hi Bethlany, I had an endoscopy biopsy done and it was negative for Celiac, however I also had a blood smear test done to test for food allergies and it showed mild sensitivity to wheat, gluten and dairy. I am a chronically ill person right now which seemed to develop slowly over the years. Is it your opinion that anyone with any kind of sensitivity to gluten go gluten free? Obviously my body is reacting in some sort of way to it.

Also, maybe you already mentioned this but how long did it take you to start noticing that you were feeling better after going gluten free?

Thanks for the info.
Posted 9/10/2011 11:15 PM (GMT 0)
Endoscopy is not full proof, as well many of us Celiacs know. If you do notice that your body reacts to gluten in a negative way then in my humble opinion I would avoid it all together. You may or may not be Celiac, you may or may not have gluten intollerance.

If you do truly go gluten free...removing all wheat, barley, rye, oats, spelt, kamut....and too removing all foods that are crosscontaminated being made on the same equipment, belts etc. then you should notice a difference withing weeks to 3-6 months depending upon your body and symptoms.

Do the research on how to remove ALL gluten and everything that is crosscontaminated with glutens, if you notice no positive change at all after 6 months it may be safe to say you dont have issues with gluten. Only you know your body and until we have actual reliable testing I feel it is up to us to figure out what makes us well.

For me, the first month or two I felt Worse. This was my body detoxing. Then around month 3 I noticed that all my anxiety and 17 yrs of panic attacks had completely disappeared. At 6-8 months I noticed my hormones rebalance, I regained an immense amount of energy and started to truely feel free and healthy. If you do decide to try gluten free and need some tips on cooking, recipes, and what ingredients are gluten free shoot me a note and I would be happy to help. ;)
Posted 9/11/2011 4:54 PM (GMT 0)
Tracy,

I'm really glad you found your celiac issue and are coping successfully!

I had a question - were you actually diagnosed with lyme disease? I may have missed this...

BTW this thread has been enlightening - both my sis-in-law and niece have celiac disease & gluten intolerance. Very helpful!

Thanks!

Posted 9/11/2011 7:00 PM (GMT 0)
I hate to be the party pooper again, but Healing Well has a Celiac Forum as well, so other than answering any remaining questions, this thread should come to an end - please.

Bethlany, thank you for your insights and for sharing so much info with us!! I do hope that you will activate your email address in your profile so that members can still ask you questions, should they choose to.

Thanks All for your understanding!
Posted 9/11/2011 9:39 PM (GMT 0)
dont lyme... Lyme was neither ruled in or out, but I was treated one month iv rocephin plus additional abx with no improvement in health until I went gluten free.

Traveler, thank you! I have activated my email so....
anyone who wants to get a hold of me can do so by clicking the email icon below my member name. ;)
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