Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

AndreaB Contributor
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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
confusedks Enthusiast

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

CarlaB Enthusiast

None of those tests were for Lyme ...

Your ferratin is very low!! :o No wonder you're so tired!

confusedks Enthusiast

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

CarlaB Enthusiast

Yes, Western Blot. It will have IgG and IgM "bands".

CarlaB Enthusiast

Kassandra, I found this website that had info about low ferritin and normal hemoglobin ... how's your thyroid?

Open Original Shared Link

Flor Apprentice

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: Open Original Shared Link

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

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

Clark Bent as Stupor-Man Contributor
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:

Open Original Shared Link

Open Original Shared Link

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

CarlaB Enthusiast

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)?

confusedks Enthusiast

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

CarlaB Enthusiast

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.

AndreaB Contributor
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.

mftnchn Explorer
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.

covsooze Enthusiast

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 :)

covsooze Enthusiast

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

CarlaB Enthusiast
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.

NoGluGirl Contributor

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

jerseyangel Proficient
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

Green12 Enthusiast

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:

NoGluGirl Contributor

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!

jerseyangel Proficient

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.

melmak5 Contributor

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.

AndreaB Contributor
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.

AndreaB Contributor

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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.