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Rachel--24

Omg...i Might Be On To Something

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So I met with the allergist yesterday.

1. I am not allergic to any food

2. I am allergic to dust mites, oak pollen, dogs and cats

3. It looks like I had mono back in June (by comparing blood work from then and now), and that I do not have it now

4. I do not have Lymes disease and I am not pregnant - again

5. My IgE and gliadin antibodies are still elevated

June Numbers

Tissue Transglutaminase Ab, IgA - 58*

(normal is 0-19)

Gliadin Peptide IgA - 19

(normal <20)

Gliadin Peptide IgG - 27*

(normal <20)

***

October Numbers

IgE Serum

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Good preliminary news on the vit c.

Keep us posted on when you're coming stateside again. :)

I am arriving January 15th, and leaving again end of March. :)

I take my last round of supplements about 9PM and take the magnesium then. I take the iron with the morning supplements. Iron and mag should not be taken together.

I take magnesium with Vitamin C in a buffered powder, and first thing in the morning and again at night.

Dear Sherry,

What was in the Vitamin C supplement that you could not have?

I hope you get to come to the states this winter. You could load up on some supplements and other items you need. You mentioned a phone conference with your doctor later this week. Let us know how that goes! Also, how are your antibiotics doing with you now?

Jin, it was a pure ascorbic acid that I got in a chemist shop. I just don't know what it was derived from. The first box I got seemed fine, then the second seemed to cause problems. I realize now that it may have been causing the constipation return.

Yes, I am definitely coming to the USA, I have my tickets. I always take back a lot of supplements.

My doctor appointment is late tonight, I'll let you know. Re the ABX, I may have had a herx the last two days, but not sure. Could have been from my glutening last Friday, a delayed reaction.

Kassandra, I am totally impressed that you got the liver down!!! I cant stand it.

Melmark, thanks for the update, keep us posted and I hope something gets better soon.

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Does it make any sense why my IgA would be HIGHER now than it was 4 months ago?

Are these tests that inaccurate or is something else going on?

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I am arriving January 15th, and leaving again end of March. :)

We'll have to see if we can meet up if you want. We hibernate most of the winter to try and avoid the flu. Hubby doesn't get paid sick time so he's the one we most worry about aside from the little guy....who turns 2 next month.

Does it make any sense why my IgA would be HIGHER now than it was 4 months ago?

Are these tests that inaccurate or is something else going on?

You would need to have an ELISA IgG test run to get a better idea of what foods you're intolerant to. IgE is immediate allergic reaction foods. IgG is delayed reaction. Most allergists don't believe in IgG. If your IgA is up then your body is reacting to something.

Did you get copies of you lyme test results. I'd like to know what bands they tested for and what the test looks like. I believe Carla or Rachel have posted that the other labs don't test for some of the main lyme bands.

Kassandra,

Hope your appointment goes well today and that you have a fun time at school. :)

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Hi Kristina

I think your results suggest you've been glutened. What did the allergist say about your up to date coeliac panel? I know you're very careful now with what you're eating, but when did you start limiting your foods so much? It looks like something gluteny is getting you somewhere. I hope it goes well tomorrow. Do you mean by upper GI that you're having an endoscopy? I really hope that shows improvement of your villi :) Will be thinking of you.

On the IgA, as Andrea says, it's the IgE that's the immediate reaction. IgA is delayed also. I had the panel rerun in August and my IgA was up a bit, which my dr said meant I'd had gluten a while back (ie this didn't relate to the previous day). It's the hardest thing eliminating minute cc if you are really sensitive eg I have to be careful with DS hugging me if he's eaten gluten. I hate not being able to kiss DH whenevr I want. Unfortunately, he won't go gluten free.

Susie x

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We had an earthquake!! :o

It was the first one I've really felt in several years. It was big enough to make me run for the door.

It was 5.6...I guess the epicenter was right here in San Jose.

I'm kind of scared to go to bed now. :ph34r:

:o Are you all OK? was there any damage?

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We had an earthquake!! :o

Yikes! Earthquakes are what I hated the most about living in CA!

Did you get copies of you lyme test results. I'd like to know what bands they tested for and what the test looks like. I believe Carla or Rachel have posted that the other labs don't test for some of the main lyme bands.

Right, plus it's not as easy to read as a pregnancy test, which your doctor seems very good at reading! :lol:

See if you can get a copy of your Lyme test results and post them here. Still, if it was not IGeneX, don't consider a negative an accurate result .... the tests have a lot of false negatives.

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Does it make any sense why my IgA would be HIGHER now than it was 4 months ago?

Is it possible that you're still getting gluten from somewhere?

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:o Are you all OK? was there any damage?

Yup...we're fine over here. :)

It wasnt that bad...just scared the cr** outta me since I hadnt felt one really moving like that in a long time. I dont know if there was damage anywhere...it was on the front page of todays paper but I havent looked at it.

The only major one I've felt was the one we had in 89....lots of damage from that one. This was tiny in comparison. You just never know when everything starts to shake though. :unsure:

You never saw someone move so quickly for the front door! :lol:

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Andrea,

I got an email back from Dr. K's nurse...looks like I will probably see her. I'm not sure when yet and I'm not sure if it'll be in Washington. I'm waiting to find out. :)

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Andrea,

I got an email back from Dr. K's nurse...looks like I will probably see her. I'm not sure when yet and I'm not sure if it'll be in Washington. I'm waiting to find out. :)

I hope it's up here so I can meet up with you.

You'll have to tell me where else she goes. If you don't want to post it pm/email me or tell me next time we talk. :D

Talitha choose this :)

Micah choose this :wub:

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AndreaB & CarlaB - Yes I got a copy of the tests, sadly the Lyme just said "negative" there was nothing more specific than that.

Rachel - with the exception of the possibility of a gluten fairy coming in and sprinkling gluten into my mouth while I am dreaming, no.

I have everything written down that I ate pre-test and I have gone through it and cannot figure it out.

I want to rip my hair out I am so frustrated.

covsooze - No, its a barium swallow to look at my upper GI tract and small bowels.

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The only major one I've felt was the one we had in 89....lots of damage from that one. This was tiny in comparison. You just never know when everything starts to shake though. :unsure:

You never saw someone move so quickly for the front door! :lol:

The last one we had Mitch had Talitha in a back carrier. He dove underneath the table with her. I was on the computer and wasn't too concerned about it till a lamp was knocked over. We don't have as many earthquakes as CA but that was the worst one I'd been in.

My dad used to talk of looking over the horizon (not sure if that was here or CA) and seeing the roads go up and down in waves. They've been talking about "the big one" being due here since the late 80's. Don't know if the one in Winter 2001 counts or not. Still, I think I'd rather have earthquakes then tornadoes or hurricanes. :ph34r:

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AndreaB & CarlaB - Yes I got a copy of the tests, sadly the Lyme just said "negative" there was nothing more specific than that.

I'm assuming funds are tight. They seem to be with most of us. Is there any way you could save up for the Western Blots through Igenex? I think it's been posted that they are between $200-

$300.

Also you could find a holistic type doctor if you want to pursue IgG food allergy testing. It cost us $350 for the test I believe, not including the doctors time.

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AndreaB - Funds are tight, but I am not eating much, so hypotheically I could save up for the test, I just don't think I have it, not just because of this limited result, but my symptoms don't seem to be the correct ones.

My allergist was willing to do the IgG testing for the 10-12 foods that I am eating, but the problem is I am not having the same reactions to each of them each time and we agreed that means its not an allergy.

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AndreaB & CarlaB - Yes I got a copy of the tests, sadly the Lyme just said "negative" there was nothing more specific than that.

Then it wasn't a Western Blot .... the other testing is even less accurate ... we're talking about as accurate as flipping a coin. :angry:<_<

The Western Blot from IGeneX is less than $200 for both, and you do need both. If you want to properly rule out Lyme, I would find it worth saving up for.

Did you look at the symptom list on The Lyme Disease Thread? How many symptoms do you have?

Honestly, through the years I only had a small handful of symptoms .... but when I got really sick from it a few years ago, I developed most of them.

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I don't know if this is useful info or not ... I suspect it is, but I wanted to tell you that my LLMD checks for celiac disease as part of his differential diagnosis because of the similarities in symptoms.

I would personally want to rule out Lyme Disease because in the whole scheme of things it's *only* $200 and it's something serious to rule out.

On the other hand, your antibodies seem to indicate you are having an ongoing reaction to gluten. Maybe you could try to bring those antibodies down over the next few months while saving some money .... if your symptoms resolve, then go spend it on something you want! ;)

Could the IgA be higher because your immune system is responding better ... meaning, you haven't gotten gluten from anywhere, but your immune system is strengthening now that you're off it? This kind of reasoning works with Lyme testing, so I'm wondering if it is possible to apply it to celiac testing as well.

You're avoiding all major allergens, right? Sorry, I'm in the middle of my monthly herx and the brain fog's so bad I can't keep things straight ...

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Carla - thanks, yes I am avoiding allergens... with the exception of the traces of milk in the baby formula.

Maybe tomorrow's barium swallow will be telling, but right now I am about to scream/cry/and pitch a fit because I am so beyond frustrated.

I don't know if I need to send a horrible email to my roommates saying "don't touch my food" or go clean everything, I feel like I cannot even eat anything without having SOME reaction and I am just beyond the point of figuring it out. Thats what I am paying lots of doctors to do. WHY CAN'T SOMEONE NAIL THIS DOWN!?

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Did you say you had been gluten-free for 4 months?

It does take time to heal. As far as the ongoing problems, perhaps it's that your GI tract is so messed up right now and trying to heal. With many of our chronic health issues, there is no clear-cut answer, which is why they can't just nail it down ... it's frustrating ...

But even with my Lyme diagnosis, it's not just a matter of taking some antibiotics and being done. The Lyme has caused my body to be weak and I need to address these other issues as well ... I need to rebuild my health.

This could be the same thing you are looking at.

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Kristina,

My thoughts are that you have ongoing gut infections. Thats what I'm betting on...its just a matter of determining *what* those infections might be. It could be Lyme, could be parasites, could be yeast, bacteria overgrowth...or a combo. of these.

Before I started seeing the Dr.'s that I'm seeing now I was seeing a Dr. who specializes in gluten intolerance. That Dr. had told me that *everyone* who has gluten sensitivity/Celiac and ongoing symptoms has gut infections. He said he finds them in all of his patients with gluten intolerance.

I believe him but unfortuately he wasnt able to help me because my problems go even deeper than the gut infections (which I do have).

Unfortunately the mainstream Dr.'s arent too good about figuring this stuff out. Also parasites arent the easiest things to test for.

Thats what I'm thinking about...infections and dysbiosis.

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Talitha choose this :)

Micah choose this :wub:

Awww....Andrea...that totally brightened my day! :)

I'm sure that I will be going up there at some point...I will definately be meeting up with you guys. Its a must! :)

I'm still waiting to hear back from her as far as scheduling an appt and where that might be.

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Thats what I'm thinking about...infections and dysbiosis.

I agree. I've fought dysbiosis myself ... and my gluten intolerance is gone now. :) (I don't have celiac, it doesn't go away)

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I'm still waiting to hear back from her as far as scheduling an appt and where that might be.

Please keep me posted. :)

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So, I went to CHLA today to meet with the spinal surgeon. It was yet another disappointing day. :( He took MORE x-rays and told me that the curve is not 67 degree, it's only 25!!!!!!! This is the most ridiculous thing I have EVER heard! I have had 4 other x-rays telling me it is 67. He also told me that there is nothing he can do for me, and that over time it will get better. My question is how on earth can a curve get better over time, when everybody as they age seems to get a curve simply because of gravity?! :huh:

Ugh, I don't know, I am just really down. Yet AGAIN we go to another doctor who has no freakin' answers. :( I just don't have it in me anymore. I can't do this...it is SO hard! And when we left my mom was so happy to hear that he said no surgery but at the same time, I am in so much pain all the time. All I can say is UGH!

And on top of all of this, I went back to school after having been gone for about 3 days and my teachers all were so mean. Apparently none of them have gotten a copy of the 504, so they have been really mean to me about late work, etc. My mom then called the head lady for 504's and told her what is happening and both she and my mom are going to write notes to my teachers basically telling them o back off. If it doesn't change she said to call the head person at the district (that's a big deal here because LAUSD is such a HUGE district that the schools have to think something is really wrong to even *think* about getting them involved.) We will report that my rights have been violated and the teachers are not being compliant with the 504 and they will get them in trouble. :rolleyes:

On a happier note, I spoke with someone from a lyme site I joined (called Lyme warriors...for teens with Lyme.) Somehow I came across this mother and daughter who both have Lyme and have started an online chat support thing for teens. Anyway, the mom called me and we talked for a bit about my symptoms, etc. She gave me the name of a supposedly great LLMD and a nutritionist/chiropractor/herbalist who does muscle testing and does the supplement end of Lyme.

It was really good to think there may be some better answers from an LLMD since no "regular" doctor seems to be able to help.

Kassandra

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