Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

Ok so the other day when i went for my foot bath i paid for 6 up front which was pricey but ende up saving money then i got home and looked up this one i had thought of ordering - And it cost less then the 6 appts!!!!!!!! I was so mad. So I called yesturday to see if they had already cashed the check and they haden't so I asked them not to and i went ahead and orederd one. Its not a super high tech one but i don't think i really need a super high tech one.

Why does the price difference not surprise me.

Glad to hear your DMPS went better yesterday without the vit C.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

So...I got the blood work! I will post the ones that are out of range...feel free to shed some light!

Chemistry

Chloride 115 (98-114)

SGPT 8 (10-60)

Total Bilirubin 1.6 (<1.4)

Anemia Studies

Ferritin 4.3 (6-600)

Lipid Studies

Cholesterol 234 (<200)

HDL Cholesterol 69 (35-60)

Triglycerides 146 (10-140)

Direct LDL 152 (0-130)

VLDL (Calc.) 29 (<22)

Serology

ABO Group- Group A

PRH Type- Positive

So I don't see anywhere on here that indicates anything about Lyme. My cholesterol is ridiculous! I am not too surprised because my family has a history (even with diet and exercise, everyone is on meds). Also, my ferritin is REALLY low, so I am not too surprised I am so FREAKIN' tired!!! My thyroid for TSH is 0.50 and the range is .34-5.60. So that makes some sense too, it's not our of range, but that may be a little bit of what's going on.

Any comments, etc. would be great since I value all of your opinions so much!

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites

My ferritin is high compared to what it used to be. It was less than 0 before I was gluten-free. But apparently I am still really anemic. The strange thing is that my Hemoglobin is fine. It's 14.4 (range is 12-18).

I also didn't post the whole thing...I will later when I finish writing my paper. Do you know what I should look for? Would it be called Western Blot with a diff. lab?

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites

Kassandra,

I'm no doctor, but I thought I'd add my two cents about your cholesterol, if the doc hasn't already said anything.

The total number is no longer seen as being as important as the ratio between your good and bad cholesterol.

From the AHA:

"An HDL cholesterol of 60 mg/dL or higher gives some protection against heart disease."

Here's the site that explains more about this: http://www.americanheart.org/presenter.jhtml?identifier=183

So all your cholesterol levels are a bit high, but the fact that the HDL is high is actually a good thing.

Share this post


Link to post
Share on other sites

Thank you for the link. My thyroid:

TSH 0.50 (0.34-5.60)

T3 Uptake 34.8 (32.48.4)

Total T4 8.11 (4.50-14.00)

FTI 7.06 (4.90-13.13)

The only one that is a little low is the TSH. I am not an expert by any means on thyroid. I think thyroid problems fit my symptoms. Not to say that is the bottom of all of this. I don't get WHY I am anemic again. I'm gluten-free...what is the cause for the ridiculously low ferritin? There has to be a reason. Lyme?

I don't see anything on the labwork that talks about Lyme or anything you mentioned, Carla. I am thinking maybe it is on a different paper from the labs and we didn't get a copy.

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites
I had not heard that about flax oil, do you have a link? I always showed up allergic to it and wondered why, so it's interesting to hear that many others don't do well with it.

a couple links from lyme net:

http://flash.lymmenet.org/scripts/ultimate...t=057840#000000

http://flash.lymmenet.org/scripts/ultimate...t=056895#000000

though I just ended up buying another spectrum flax oil anyway, when I've taken it in the past I think I've been fine with it and maybe got a slight boost in my overall feeling... though I've never taken it regularly...

ughh.. got caught with the lame advertisement block... just delete one of the m's in the "lymmenet" part of the urls


- Charlie

- gluten free since January, 2006

- multiple food intolerances temporarily from leaky gut and candida

- positive test for lyme disease - April, 2007

Share this post


Link to post
Share on other sites

Kassandra, my thryoid tested out low normal like yours did so my LLMD did another test for the T4 Free, T3 Free, T3 Uptake, and T3 Reverse. The T4 Free and T3 Free were low normal. He started me on Armour Thyroid and I have felt somewhat less fatigued, though it's only been a week.

You might bring up the connection between low thyroid and low ferritin to your doctor (maybe he hasn't thought of it) ... if you have Lyme, it could be causing this.

Did your ferritin levels ever build up to a normal range? It could be that you just haven't stored enough iron yet.

How are your basal temperatures (temp first thing in the morning)?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Carla,

Well, my ferritin was less than zero in March. Then I had iron IV's and ferritin went up to 130. Then 6 weeks later it was down to 40, but that is when I went on a gluten-free diet. My iron saturation was also very low, but on a gluten-free diet, it tripled-went from 10 to 28 in a couple weeks! This was after the IV's. My doctor was fine with the fact that they were at 40, even though he initially told me I would START to feel better when they were at 50. So it made no sense to me. We are seeing a different Dr. because we need another opinion. It is just so puzzling to me!

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

Share this post


Link to post
Share on other sites

Kassandra, well, it sounds like whatever is *causing* the low ferritin levels is still there. So far, your new doctor sounds helpful. :)

I really think all this is tied togther ... that there's something underlying it all ... if not Lyme, then something else.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
Kassandra, well, it sounds like whatever is *causing* the low ferritin levels is still there. So far, your new doctor sounds helpful. :)

I really think all this is tied togther ... that there's something underlying it all ... if not Lyme, then something else.

I have to agree with Carla on this.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites
At least you guys are all on the same continent! ;) I guess that makes me the UK ambassador to Rachelville :lol:

LOL, I wonder what I am? Anyway, it is nice to have friends around the world.

I give up.

I ate no new foods last night. All old "ok" foods and at 1 in the morning was awoken with sharp intense chest pain (7/10). It burned so badly. A third of a bottle of pepto later, it started to quiet.

I spent a good hour on the bathroom floor wishing I could puke it up.

The last time I ate was at 8:30pm.

What gives?

Just a thought, it might not be what you just ate, maybe look back at your records for 4 days and see if anything stands out.

Sure hope you are better soon. Sounds like you have put a lot of energy into your health without much to show for it. And I have been there too! It is hard, hang in there.

Thank you for the link. My thyroid:

TSH 0.50 (0.34-5.60)

T3 Uptake 34.8 (32.48.4)

Total T4 8.11 (4.50-14.00)

FTI 7.06 (4.90-13.13)

The only one that is a little low is the TSH. I am not an expert by any means on thyroid. I think thyroid problems fit my symptoms. Not to say that is the bottom of all of this. I don't get WHY I am anemic again. I'm gluten-free...what is the cause for the ridiculously low ferritin? There has to be a reason. Lyme?

I don't see anything on the labwork that talks about Lyme or anything you mentioned, Carla. I am thinking maybe it is on a different paper from the labs and we didn't get a copy.

Kassandra

Kassandra, thyroid levels are very complex to interpret from what I understand. But what I got from my doctors is that besides the lab levels, symptoms are important. A really important symptom is your basal body temperature. Take you temp every morning when you wake up but before you get up. I forget how long, and it has to be a certain time during your menstrual cycle. Low temps mean you need thyroid. Maybe doing BBTs for awhile will help your doc decide what to treat.

Low thyroid is connected to celiac for sure.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

Share this post


Link to post
Share on other sites

Hi Kassandra :)

I agree with what's been said already about thyroid. Blood tests aren't necessarily the best way of figuring out what's going on. Here's a UK site that's great about thyroid:

www.thyroid-disease.org.uk

www.stopthethyroidmadness.com is also really helpful.

(BTW, Dr Peatfield who is mentioned on the UK site is the dr I'm trying to arrange to see :) He's got a great book out on thyroid/ heavy metals/ adrenals etc that's referred to on that website).

Anemia is very complicated and will certainly cause you to feel exhausted. My hemoglobin levels are still low, so I've obviously got issues still going on. There are so many things that can cause it though. Problems with other deficiencies can cause iron-deficient anemia eg zinc (I think that's part of my problem). I haven't researched extensively on this and can't pretend to understand it, but just to highlight that you need a dr that's not just going to give you iron - that treats the symptoms not the cause.

Good luck!

Susie x

PS haven'tm posted 'properly' for a few days, so I haven't said it before, but congrats on getting the 504 sorted :)


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

Share this post


Link to post
Share on other sites

Mia, good to hear your IV was a bit better without the vit c :) What problems do you (and Rachel) get with vit c? My detox is vit c, plus garlic and milk thistle. It keeps me awake at night and makes my whole digestive system feel terrible :( But it does seem to be working. I've not taken it the past couple of days coz I need sleep. Trying to figure out what part of it is causing the probs and where to go from here.

How's your footbath?

Patti, thinking of you with all your prep for the w/e :)

Jin, where are you? How's the hound? Have you been making any progress taking the magnesium? Thanks for remembering my call to Foresight :) Haven't called them yet as I've been so busy. I'm off work now till next Wednesday (hooray :D ) so will call today.

Susie x


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

Share this post


Link to post
Share on other sites
Kassandra, thyroid levels are very complex to interpret from what I understand. But what I got from my doctors is that besides the lab levels, symptoms are important. A really important symptom is your basal body temperature. Take you temp every morning when you wake up but before you get up. I forget how long, and it has to be a certain time during your menstrual cycle. Low temps mean you need thyroid. Maybe doing BBTs for awhile will help your doc decide what to treat.

Low thyroid is connected to celiac for sure.

Since Kassandra is on the pill to help with her cycles, it won't matter what time of month as she shouldn't be ovulating. For those not on hormones, it's after menstruation till about the 14th day of the month and it needs to be first thing in the morning after waking before getting up.

Google Broda Barnes and you will learn a lot about this method. My basal temps are about 97.7, which really isn't to bad. They used to be much worse.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Dear Everyone,

Do not worry, I am just behind on posting! I will have my column on here soon! I have had to make a dental appointment, been doing some research, and suffering with headaches.

That is on top of household activities. Taking care of Dart has also kept us busy. He is doing very well!

Sincerely,

Jin


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

Share this post


Link to post
Share on other sites
Dear Everyone,

Do not worry, I am just behind on posting! I will have my column on here soon! I have had to make a dental appointment, been doing some research, and suffering with headaches.

That is on top of household activities. Taking care of Dart has also kept us busy. He is doing very well!

Sincerely,

Jin

Thanks for checking in--I noticed you haden't posted lately, and I was getting worried. Sounds like you've been busy--sorry about the headaches :(

Glad to hear Dart is doing well--take care and I hope you feel better soon :)

:D your column :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

Wow, lots of scientificness :lol:

I don't have anything to add on thyroid, looks like it's all been covered. But I do second and third the sentiment that blood tests don't always show the entire picture.

Thanks Charlie for those links!

Hey guys, I was thinking that Ami hasn't posted in a really long time, I am hoping everything is ok with her :huh:

Share this post


Link to post
Share on other sites

Dear Patti,

You are so sweet! :) I thought you guys would be concerned. That is why I posted a mini update! This afternoon my column will be up and running again! I will warn you ahead of time it will be a doozy! :lol:

My headaches probably will not improve until I get this tooth extracted. The oral surgeon cannot get me in until December 13th. I am afraid I have a bad infection. Due to the yeast, going on antibiotics would be problematic. I am not sure what to do. That is on top of desperately trying to get my doctor going on the Lyme testing. :(

I see the eye doctor Tuesday, and will hopefully get my new glasses then. I have to strain all the time to see, even wearing my glasses. The recent typos should have given that away! :lol: Incidentally, this is what I look like trying to see: :blink: in case anyone was wondering. Tuesday may also find me at the hairdresser's getting a sample piece of hair for her to play with.

I am trying so hard to find anything on what is in some of the hair products she needs to use. The trouble is, so far, the Web sites have revealed nothing. So, I posted on the forum and hope someone on here knows about these products! Out of everyone on here, someone is bound to be a hairdresser! Phone numbers are not on many of the packages, either! WTH?

Dart should get to start eating more today. He had to be fed a Tablespoon every two to three hours the past few days. I am nervous about giving him much at once. My aunt thought his stitches looked red. We worry about the stitches inside the most, since he has been hard to stop jumping and going up and down the stairs. Dart is not good at being still, and we could not get him to calm down.

Dear Julie,

I hope Ami is alright, too! She has not been on for some time now! :unsure: Maybe she is just busy. Let's hope that is all. Maybe one of us should PM her or something.

Sincerely,

Jin

P.S. Do not worry everyone else, I have my notes, and have not forgotten any of you! I just need to organize my little outline. There are a lot of things I want to respond to from the last few days!


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

Share this post


Link to post
Share on other sites

Jin--

I was thinking that your headaches also may be due to your eyes. If you need a new Rx for glasses--especially if your sight is significantly different in both eyes, it can cause headaches. This happened to my younger son.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

Jin - it also may take a few days for your eyes to adjust (which can cause headaches) to your new glasses, because they have been working so hard to compensate. So if your headaches don't go away right away the new glasses, don't be discouraged.

Share this post


Link to post
Share on other sites
Dear Everyone,

Do not worry, I am just behind on posting! I will have my column on here soon! I have had to make a dental appointment, been doing some research, and suffering with headaches.

That is on top of household activities. Taking care of Dart has also kept us busy. He is doing very well!

Thanks for the update. Sounds like you've been busy. I had thought I'd seen you on reading, but now I don't remember.

:D your column :D

Hey Patti! My kitty is back! :)

Jin--

I was thinking that your headaches also may be due to your eyes. If you need a new Rx for glasses--especially if your sight is significantly different in both eyes, it can cause headaches. This happened to my younger son.

I agree.

Jin - it also may take a few days for your eyes to adjust (which can cause headaches) to your new glasses, because they have been working so hard to compensate. So if your headaches don't go away right away the new glasses, don't be discouraged.

I agree with this too.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

Carla,

Had you said that Bragg's Apple Cider Vinegar was alkalizing? Or was that just the lemon juice that was?

I was reading on a different site where a person had written about adding baking soda to ACV to neutralize it more. I think that made my bladder infection worse again. Otherwise the Oil of Oregano is working better than the ACV. I supposed to take the oil 3x a day and so far have only had it 2x.

Trying to figure out alkalizing which is going to be challenging on our short food budget. Doesn't help that our water is acidic. I'll use a test strip with that when we replace the filters in the next month and see if that makes a difference.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.