To Challange

[Lister]

wondering if once again i should challenge my diagnosis. After doing some reading i discoverd that

Lectin sensativty can be caused by influenza, and mimics celiac disease until the lectin is removed from the diet and you give your chance to recoup- people that are truly lectin sensative and not gluten sensative eventually can go back to eating perfectly normal after there bodys have had enough time to heal. Im wondering if maybe that could be my case

reasons why

1. my blood tests where not just negative they were perfect, every aspect of my blood tests are 100% normal no elivated or lowerd levels everything was 100% perfect

2. None of these problems started' until i got the flue for 2 weeks

3. i have been gluten free for over 4 months now and still am having most of the same problems everyday\

i dont know maybe i should bring it up with my doctor, or try not to eat any lectins for a while (not sure how to avoid though)

[CarlaB]

I don't know anything about it, but your logic is sound. Maybe eliminate lectins and see what happens. I wouldn't start eating gluten though since your doc thought it was celiac by the condition of your intestines. If you eliminate the lectins and suddenly get better, then that gives you your answer.

[Lister]

even if it is lectines, it imitates celiac disease down to beeing sensative to gluten, not until the lectines have been removed for a extensive amount of time, then gluten is no longer sensative but for now it will imatate celiac disease its wierd... so yeah if i can figure out how to elimanate lectines and still eat, then i will

[CarlaB]

Yea, I'm with ya' there! And still eat! I'm both casein and gluten intolerant, so I know what you mean!

[Rachel--24]

Lister, lots of people have negative blood tests but are still gluten intolerant. You can be intolerant w/out being Celiac...it wont necessarily show up on a bloodtest. I know you are financially strapped but since you have so many questions in your head maybe you should try to get the money for an Enterolab test before you try going back on gluten. Just a thought. It could give you all the answers you need about gluten being an issue or not. Enterolab tests are way more sensitive than the bloodtests and it will tell you once and for all whether your body is producing antibodies against gluten.

[CarlaB]

Lister, lots of people have negative blood tests but are still gluten intolerant. You can be intolerant w/out being Celiac...it wont necessarily show up on a bloodtest. I know you are financially strapped but since you have so many questions in your head maybe you should try to get the money for an Enterolab test before you try going back on gluten. Just a thought. It could give you all the answers you need about gluten being an issue or not. Enterolab tests are way more sensitive than the bloodtests and it will tell you once and for all whether your body is producing antibodies against gluten.

This is true. My tests came out negative, and I was a high positive with Enterolab. I had been eating very little wheat for three years prior to my bloodtest, so that may have been the reason it came back negative.

[celiacgirls]

I agree that the blood tests don't always show it. One of my daughters was tested 3 or 4 times by the time she was 8 and they were all negative. She continued to complain about her tummy and felt better being gluten free. I finally found Enterolab and she was positive.

[tarnalberry]

1. my blood tests where not just negative they were perfect, every aspect of my blood tests are 100% normal no elivated or lowerd levels everything was 100% perfect

2. None of these problems started' until i got the flue for 2 weeks

3. i have been gluten free for over 4 months now and still am having most of the same problems everyday\

I agree with CarlaB, your logic is quite sound, and it is worth investigating.

[Lister]

how much are the tests??

could the tests be fake? since everyone that does it is usualy positive?

on a side note just because i thought it was funny:

my girlfriends grandma told my girlfriend, that im anarexic and i need help

HAHAHAHAHAHAHAHA i fricken eat 3-4 meals a day (well balanced at that) and i still have a stomic, so i thought it was pretty funny

also on another side note, anyone ever get wierd tingles on the side of there head? as if its a cold chill that just brushs over one side?? anyone know what causes this? im getting cold feeling up there and then warm rushs around my body its strange

how do i go about removing lectins? it seems like everything is either gluten or lectin or casien containing

i already dont eat anything with gluten or casien arg and i already have a hard time thinking of new things to eat to prevent leaky gut

[gf4life]

You should talk to Ursula. She is lectin sensitive and might be able to help you out. I already sent her a PM asking her to check out this topic. So maybe she'll stop by here next time she is online...

Here is a link from her signature Open Original Shared Link

Also, as for the Enterolab tests, they are real and valid and not everyone does test positive. But you have to figure that if they didn't test positive for gluten intolerance or Celiac, then they wouldn't be hanging around here on a Celiac/gluten intolerance message board...

[Lister]

i had one more question to add, its unrelated to the topic, but i figure i may as well post in my post instead of making a new one

anyone ever have a "fart" but it does not come out?? what i meen is i wa sjust sitting down and everyone around me including me herd me fart, i felt it too, but it was not from gas passing out my bum it was like inside me, ummm is that bad? or normal? it was strange and freaked me out

[gf4life]

Your talking about audible sounds coming from your intestines? I used to get that ALL the time when I was eating gluten, now I only get it when I am glutened accidentally. It sounds like really loud grumbling coming from inside, at least that is what mine sounded like.

How long have you been gluten free? It can take some people many months to find relief on the diet, maybe it will just take a little more time, or you are right and gluten is not the main issue. You might also have issues with gluten AND other foods. It is rare to find somene who is only gluten intolerant. For me it is gluten, soy and dairy. I also have problems with legumes, bell peppers, beef, pork, and a few other foods...

[Lister]

no it was not a audible growl, but i know what your talking about.. I get those growls if i dont eat every 45 minutes. I know i did not get glutned, and it was not painfull or anything, it was just a audible fart noise that came from my butt but not out of my butt from the inside of my butt

do the entrolab tests test for anyother food problems or just gluten?

[Rachel--24]

Enterolab can test for casein, egg, yeast and soy. They are not all included in one test though. I got the one that tests for antibodies against gluten (Iga), damage from gluten intolerance (tTG), malabsorption, and gene testing. They threw in the casein test as part of the package. It was around $350...money well spent...but you dont have to pay that much. I think just to find out if you have antibodies present (w/out all the other stuff) is like $99.

Later on I did the yeast and egg tests seperately. I was negative for everything except gluten. I showed positive for gluten, damage, genes and malabsorption.

[evie]

Lister, hope you will follow up on the lectin idea/ Ursula, you may have something there. If that does not pan out you can always do more testing or whatever you and your DR. decide. Have you run the lectin idea past your dr. or do you plan to? Whatever you decide I know you are anxious to get to the bottom of your problems. Hang in there, you will get the answer one of these days!! evie

[Ursa Major]

Hi Lister, Mariann (gf4life) has 'paged' me, and here I am.

Gluten is one of the lectins. Therefore, in order to eat lectin free, you also have to be gluten-free.

The foods high in lectins are: All grains (including rice and corn), all legumes (including peanuts and soy), eggs, all dairy and all nightshades (potatoes, tomatoes, pepper (all peppers, including the hot ones), eggplant, tobacco).

You would do well to read through the website I link to about lectins in my signature. Most doctors don't have a clue about lectins. They haven't even heard of them. It's up to you to figure it out.

It is possible that you may be able to eat the lectins again, including gluteny grains, but not very likely. If you have a lectin intolerance, you will likely be intolerant to one or two of them forever, and one of those would more likely than not be grains. But hey, you never know. You WILL have to be off them all for quite a while before you should challenge them, one group at a time, two weeks apart.

I keep hoping and trying them every now and then. The only one I might be able to eat again at this point might be legumes (other than soy it seems), beans don't seem to be causing a big problem any more. Dairy seems to be getting a little better, the same with eggs. Nightshades and grains are the ones I seem to be stuck with for life if I am right.

Anyway, in order to do this right you need to seriously take the time to read through the website, it's very informative. I have no intentions of copying everything here, when you can just follow the link to inform yourself.

I hope you figure it out. And I agree, if you want to be sure about celiac disease, try enterolab. At least then you'd stop doubting and wondering.

[GravStars]

also on another side note, anyone ever get wierd tingles on the side of there head? as if its a cold chill that just brushs over one side?? anyone know what causes this? im getting cold feeling up there and then warm rushs around my body its strange

i get sensations like that too. i'm not always sure why, but anxiety can produce these symptoms. i wouldn't worry too much about it, it will probably dissapear once you get to the bottom of whatever is going on with you.