Omg...i Might Be On To Something

[linds]

I haven't had any scopes done. I am absolutely terrified of doctors which is making this all that much harder! I have had my gall bladder checked a few different times. The first time when I first started getting sick and then they just did it again this fall because my mom actually needed to have hers taken out in september.

I swear the doctors are idiots they have taken blood and done a ct scan and ultrasounds but they haven't even taken a stool sample. Is that weird?

Carla,

I don't know if it have arthritis in any other part. I've just learned to deal with my joint pain. They say I have degenerative joints (runs in the family, all of my aunts have it) and that it has been aggravated due to injuries which is why it is bad at 21.

[CarlaB]

The reason I ask about joint pain is, I know it's in your hand from breaking it, but if it's elsewhere, it might be a symptom of something else. Living in the country in Minnesota, or at least in a small town and spending time in the country, you could have been exposed to a Lyme infected tick. Many of us who thought we might have a gluten problem, and actually seem to have a gluten problem, are finding out that we have Lyme Disease as well. Some here with Lyme have so many food sensitivities that there are only handful of foods they can eat or they have digestive issues.

Whatever you have, it seems to be affecting multiple systems in your body, which is why I bring up Lyme. Your cardiovascular system, digestive system, and joints all seem to be affected. So, whatever it is, it affects several systems.

[rinne]

Hi linds and welcome.

I'm sorry that you are experiencing such distress.

Are you still eating dairy?

Do you have any other symptoms which have kind of faded into the background in the midst of this gastric crisis?

[linds]

I have been tested for lyme disease. It was a long time ago but it was one of the first things they tested me for when I started having bad joint pain.

I am not really eating dairy. I don't like milk haven't drank it since my mom stopped forcing it on me. It never made me feel bad i just really don't like the taste of it. I eat the occassional yogurt no more than once a week and usually even less often.

I'm just getting so frustrated. I feel like if i'm not feeling any better on a gluten free diet i should just give in and let myself eat all those things i really want to!!

[CarlaB]

Did you get tested by IGeneX out in California? There are only one or two labs whose Lyme tests are accurate. Plus, Lyme tests often come out negative when someone has been infected for a while because of the way the immune system and testing works. I wouldn't write it off just yet. Rinne and Rachel have more information and can probably provide good links for you to look over.

[Fiddle-Faddle]

Welcome, Linds,

I have a colleague who had done a lot of figure skating in her teens. She is in her thirties--and just had both hips replaced. I believe she said it was something congenital, but that it had been severely aggravated by the skating. I have no idea if she has gluten issues or not, but I will try to find out.

Not having answers can be terribly frustrating. Hang in there, someone's bound to come up with something here!

[rinne]

I have been tested for lyme disease. It was a long time ago but it was one of the first things they tested me for when I started having bad joint pain.

I am not really eating dairy. I don't like milk haven't drank it since my mom stopped forcing it on me. It never made me feel bad i just really don't like the taste of it. I eat the occassional yogurt no more than once a week and usually even less often.

I'm just getting so frustrated. I feel like if i'm not feeling any better on a gluten free diet i should just give in and let myself eat all those things i really want to!!

That is interesting that you have been tested for Lyme disease, how did that come about? Do you know what laboratory did the testing? Igenex is the laboratory of choice and as we have been learning here it is critical that a Lyme Literate doctor read the results from Igenex. Maybe more critical than that even is that we learn to read the results ourselves.

So it seems dairy is not an issue for you. It sounds true if you aren't eating butter and cheese either.

I raise it because for many Celiacs once the villi are damaged then there is often an intolerance to dairy that may or may not go away once the villi heal. I know I was in denial about butter for a while and recently had an OMG moment when I realized I could eat popcorn if I didn't put butter on it. Nutritional yeast was very tasty instead.

Are you positive your diet is really gluten free, sorry if you have already answered this, soaps, cutting boards, vitamins,.......every single thing you put in you or on you, laundry soap....?

If you are, then perhaps you could try eating some gluten and see what happens. Do you keep a food journal? Do you use any sugar substitutes? Diet drinks? MSG? It is as bad as gluten for being in everything.

[linds]

rinne:

I am not sure which lab did my lyme test. It was quite some time ago. I had it done because I was having joint pain. I live in rural northern minnesota and have at least 10 usually more tick bites a year its a hazzard of loving the outdoors in the north.

as for dairy. I don't use butter just margarine. and i don't really like the tast of cheese much either.

I am pretty sure I am completely gluten free. I know my detergent, soaps, shampoo, lotion and chapstick is gluten free. I don't wear make up or nail polish so thats not an issue. i got a new cutting board and storage containers. And a new collander everything is always washed in the dishwasher with gluten free soap.

I gave up drinking all caffinated drinks and all soda. and i only use regular sugar.

[happygirl]

x

[Rachel--24]

Hi Linds,

Didnt you mention on another thread that its totally normal to have ticks all over you in your area?? That you dont go outside without getting some ticks on you? I would be concerned about that. It sounded like your Dr.'s take the "wait and see what happens" route when it comes to tick bites. Thats not a good sign.....doesnt sound like they take Lyme very seriously where you live.

You could have Lyme symptoms and havent been properly tested. If you let something like that go it will only progress.

I didnt start out with digestive problems but now I have MAJOR problems with food. I have joint pain too but not too horrible. I have Lyme Disease and I've never even seen a tick on me.

[linds]

Yea they don't take it that seriously in my town but i was tested by a doctor in a larger city a few hours away. They had sent me to see a specialist becuase of my joint pain and lyme was the first thing they tested me for there where they never considered it at all in my own town. So i am guessing that they took it more seriously there.

[Rachel--24]

Oh....have you been tested for Celiac??? I didnt read your Enterolab thread but did you get tested??

[Green12]

Hi and welcome linds

I don't have much info to offer either, just wanted to say I am so sorry about your digestive struggles . Most of us here in this thread can certainly relate. I know for me sugar is a big problem, have you ever done a trial elimination of that from your diet?

[linds]

I have not been tested by enterolab yet. I am thinking about it but was wondering a few things about them. Like if my results did come back negative does that mean that i don't have it or could i still have it?

no i haven't eliminated sugar that would be even harder than eliminating gluten. I am a big sugar junkie!!

[Rachel--24]

Yea they don't take it that seriously in my town but i was tested by a doctor in a larger city a few hours away. They had sent me to see a specialist becuase of my joint pain and lyme was the first thing they tested me for there where they never considered it at all in my own town. So i am guessing that they took it more seriously there.

Most Lyme tests come back negative even when the person has Lyme...its because most Dr.'s dont use a qualified lab. Also Lyme is really really hard to diagnose....the bacteria has a way of "hiding" from the immune system so its really tricky and often hard to get a positive test.

Igenix is a lab that "specializes" in Lyme testing and they have the most accurate results. Its still not 100% but FAR better than any other lab. I was told by people online that any other lab is pretty much useless for getting accuratte results.....they miss almost all positive cases of Lyme. My Dr. told me the same thing and he only uses Igenix for Lyme testing.

Like I said...I never saw a tick on me...actually I'm not really familiar with ticks...if I saw one I just thought it was a "bug". I did alot of camping and outdoorsy things but I'm in California and I never heard much about ticks or Lyme Disease.

Anyways after 4 years of going from doctor to doctor and getting a million tests done...ONE Dr. finally thought I might have Lyme and ordered the Igenix test.

If you dont get any answers...its something to think about....given your frequent run-ins with ticks. Especially if you continue to get worse...it cant hurt to get tested from the right lab.

[happygirl]

x

[Rachel--24]

I have not been tested by enterolab yet. I am thinking about it but was wondering a few things about them. Like if my results did come back negative does that mean that i don't have it or could i still have it?

If your tests are negative you probably dont have a problem with gluten.

Enterolab doesnt diagnose Celiac though...so you may *react* to gluten but not have Celiac. Your test would still be positive if you react to gluten.

I got all the Enterolab tests and I dont have a Celiac gene....so I dont have Celiac. But everything else was positive and the results said I was getting damage from gluten and need to be on the diet. I've been gluten-free a year and a half but I didnt get better. I just found out about the Lyme in October.

At this point I cant eat much of anything. I only eat 5 foods that I dont react to. For me it seems like the Lyme got this whole thing started.

Before that....I was perfectly healthy....never got sick and could eat whatever I wanted. I never had allergies to *anything* and now I'm allrgic to pretty much everything...not just food.

So, if you end up cutting thing(s) out, someone in this group has done it (actually, many of us had!!!!)

Oh yeah......my list is loooooong.

[CarlaB]

For my IGeneX test, I actually had to call the lab and have them mail it to me, I took it to my doctor for the bloodwork to be done.

Rachel, I think my question got buried. I got all excited today because I got a big IGeneX envelope, but it was just the billing info. How long after you received your billing information was it till you got the test results? I noticed that it took SIX days for the mail to get here from California!

[Rachel--24]

Rachel, I think my question got buried. I got all excited today because I got a big IGeneX envelope, but it was just the billing info. How long after you received your billing information was it till you got the test results? I noticed that it took SIX days for the mail to get here from California!

Carla,

Sorry...you are asking the wrong person.

Remember.....I'm the one who was throwing all the mail into the trunk... frantically trying to get my results from the Dr. and all the while they were sitting in my TRUNK!

There was probably 3 weeks of mail by the time I saw the results....so everything was together. I dont know how much earlier the billing info. came.

[CarlaB]

Sorry, Rachel, I don't know what I was thinking asking you. All I can do is plead brain fog!!!! When I spoke with Adam earlier, I must have sounded really out there because he told me several times that I needed to take a kid to the grocery with me!!! Sometimes I get there and get so disoriented I have to call him, since he's out of town, he really didn't want any problems!

[rinne]

linds, how is your mother's health, father's, grandparents?

[Rachel--24]

Linds,

I was wondering if you'd been tested for Celiac....by the doctors?? They can order bloodtests but once you start the diet the results arent accurate. Did they ever test you?

If you had Celiac and nothing else....you shouldnt really get worse after starting the diet....unless you are still getting gluten from something you're eating or a product you're using. Thats the only reason I could see for continuing to feel bad.

How careful are you on the diet??

Poor Linds,

We are bombarding her with questions.

[linds]

Family health is good. My mom and everyone on her side of the family has severe joint pain even all of my cousins which is why me having it has never really been that big of a suprise. otherwise my mom is in very good health. she just had her gall bladder removed this past september and the funny thing was that the doctors found it but she had never had any symptoms from that. My dad has very good health also and a very strong stomach (like i used to) just a bit of high cholesterol from a bit too much bacon. both of my grandfathers died in the 50's but from heart problems. My dads mom just passed away this past summer from kidney failure she had had heart problems also before she died but then again she was just shy of her 90th birthday. my other grandmother has been in very good health all of her life just had her first hospital visit ever a few years ago at the age of 82. she had a knee replacement which led to a heart attack during surgery (they didn't put her to sleep for the knee replacement!) and then she also had her gall bladder out. Everyone seems to be in good health. just a few problems but nothing really digestive and i have had my gall bladder checke a few times.

I have not been tested by the regular doctor I begged, they wouldn't listen so i just said forget them and am trying the diet myself. I feel i have been very careful. as i mentioned before i have changed dishes, personal care items, and am very careful with cc.

[dlp252]

More thoughts for Linds (that's what we do here Linds, lol, throw out thoughts while we have them ) ...

I saw some minor improvements during the first few weeks I went gluten/casein free, but really didn't notice any drastic changes. The biggest (and fairly major in some respects) benefit of going glute/casein free was probably the fact that I haven't had a "sinus infection" in a year (when I cut out gluten/casein)...I do think that was probably more to do with the casein than the gluten.

I was tested by Enterolabs and got both the gene test and the complete panel. I do have a celiac gene and a gluten sensitive gene, and my stool test showed I had an intolerance to gluten and casein, but not to yeast or eggs. I also did not have a positive malabsorbtion score.

One of the reasons why we all found each other on this thread is because none of us really saw the major changes we should have from just cutting gluten. So, for months now, we've just been exploring different things it could be. I'm currently being tested by some new doctors, and am waiting for the results of my second stool test (had one last year by a conventional doctor which showed nothing).

After this I'm planning on pursuing the Lyme thing, even though I live in California. I also have a mercury problem and am in the process of getting my amalgams replaced. I figure it can't hurt (okay, dental work always hurts, but you know what I mean, lol) and it might help.

[CarlaB]

Speaking of mercury ... I take my temp. for NFP (natural family planning). This morning I was groggy and took it, then set the thermometer on my nightstand, but missed! It fell on the floor -- little balls of mercury EVERYWHERE! Rats. I have wood floors and it got in the cracks (it's a finished attic, so they're rough cut floor boards -- very old house). I had to vacuum it up, probably not the best method.