Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

tabasco32 Apprentice

Yeah I can't take Flagyl either. Last time I took it for what my doctor thought was BV I got so sick man. I felt like I had the worst stomach flu ever. Nausea, vomiting and diarrhea. Chills and fever. Never metrinidozole again, never. I mean cipro and macrobid were better for me.

By the way I know someone asked this not to long ago but how do you check for liver enzyme function and how do you muscle test yourself?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
aprilh Apprentice
Hi Birdy, I look forward to the update from your appt Mon :)

April, I know nothing about iron, but any chance she is potassium deficient??

I had a lot of leg pain and leg cramping for several years and eating foods high in potassium helped, don't know if your daughter is experiencing these same kinds of pains/cramps? Just a thought.

Could be....not really sure. She responded to the iron supplement last year when this happened. With heavy metals, I am sure there could be other minerals low.

Genova's Urinalysis (provoked DMSA) done 4-10-07 showed non detectible levels of Iron. Potassium was in normal range. Copper was off the charts high. Calcium was a little low - so probably need to supplement that, especially since we are dairy free. For the metals - well there were all kinds of metals showing. 4 out of 20 showed nothing detected. 16 out of 20 showed some kind of level.

I know this sounds wierd, but I think dairy and wheat take the pain to a increased level. She hardly ever eats that, but tonight I let her have a little bit of regular cake and by the time we got home - bam! She was in severe pain. Maybe it increases inflammation.

Link to comment
Share on other sites
aprilh Apprentice

I dug up my daughter's blood test results from March 2007.

Ferritin, Serum - results 22 - range 10-291

Lead, Blood - results 1 - range 0-9

Tsh - results 2.085 - range .360 to 5.800

The doctor at the time wanted her to take 200mg of ferrous sulfate per day. Isn't that way too much?

Feb 2007- blood test showed Hemoglobin 12.1 with range of 11.5 to 15.5 being normal. She had a CBC. The only thing looking to be off were Platelet counts were high.

I need to learn the difference in hemoglobin levels and ferritin levels.

Link to comment
Share on other sites
Green12 Enthusiast
By the way I know someone asked this not to long ago but how do you check for liver enzyme function

Lisa, there is a blood test, it usually is included in a complete blood panel so you might have it in your results if you have had some blood work done. I think they are "SGOT" and "SGPT" on a blood panel.

I know this sounds wierd, but I think dairy and wheat take the pain to a increased level. She hardly ever eats that, but tonight I let her have a little bit of regular cake and by the time we got home - bam! She was in severe pain. Maybe it increases inflammation.

Could be, gluten and dairy are responsible for a lot of adverse symptoms.

Link to comment
Share on other sites
CarlaB Enthusiast

Lisa, self-testing -- Open Original Shared Link

Link to comment
Share on other sites
mftnchn Explorer
Did you do anything specific to try to get them down, or was it just a wait and see and retest thing?

I am hoping the homeopathic liver detox I am on will help mine return to normal on my next retest.

Mainly just dropped the flagyl (metronadazole) and lamisil (antifungal). Other than that, just the detox stuff I was doing, including the gua sha in China.

I am hoping yours is better soon, too.

Link to comment
Share on other sites
confusedks Enthusiast
I was giving myself the shots twice a week, I'm back to once per week for a couple of weeks, then I'll go back to two times a week. I don't know why it bruised so badly...it bruised almost immediately, but I guess it could have been because I rubbed it pretty hard with the cotton afterwards. Today I just swiped it a little bit, and it was bleeding a bit so I put a bandaid on it. So far, there's some discoloration, but not nearly as bad as last week, and it's in a line...not round! :unsure: The bad one on my other leg is round. I don't know...I'm thinking being such a danger to myself, I should probably go to the doctor's office for these, lol.

I don't think you can really do too much damdage, but I could be wrong. Lol! I also never had one done at the Dr's office, so I could be doing them totally wrong because I have no idea what it's "supposed" to be like.

HELP! Anyone with knowledge about iron deficiency.

Since she had levels high in lead, this could displace iron in the body. They checked her iron and the levels were okay in the blood but later my ND said they should have checked her iron stores (ferritin levels?)

Anyway, she responded positivily to iron supplement and then during the summer we did a short detox and it seemed she didn't need as much iron after that. My guess was that some of the lead was removed.

So, tonight she is getting bad pains again for the first time in a year. She is on the couch crying in pain and won't walk or hardly move. I gave her some iron and vitamin C with it, but its one of those things you don't want to overdose on.

Kassandra, what were your symptoms of anemia?? Did you have leg pains?

I am not sure what to do next right now.

I don't think I had leg pains, I had EXTREME fatigue. Like, I was literally sleeping 20 hours a day. And was still exhausted. I also had lots of shortness of breath (which I still have, so that may not have been related, but it *is* a symptom of anemia.)

Yes, they call ferritin iron stores. Most Dr's do NOT test for this unfortunately. I went to my PCP for months complaining of exhaustion and he kept telling me "your hemoglobin is fine, you're not anemic!" Boy was he WRONG! I got the hematologist and had ZERO ferritin! Needless to say, I was absolutely exhausted.

The difference between Hemoglobin and Ferritin is that ferritin is kinda like a UPS truck which *carries* iron around to all the cells, which then use hemoglobin to deliver oxygen all over the body, and brain. Ferritin is VERY important...it's the reason I have Iron IV's. If you don't have good ferritin levels, iron isn't properly distributed around the body. Mine gets low for no reason. Her ferritin sounds low, but I am not sure. They can tell you how much she should have based on age, sex, height, etc. Mine should be around 150 to feel good.

But, I'm 17, weigh 115 lbs and am 5'4". So, hers may be fine. Unfortunately on a hematologist knows about these things. Most PCP's/Pediatricians don't have any idea about this stuff, even though they say they do. <_<

200 mg of Ferrous Gluconate is not a lot. It sounds right to me. My Dr wanted me taking 4, 324mg tabs a DAY! :o The bottle we have here is dosed at 324mg each pill. Strange. He was trying to load me up with iron, but since my GI tract was messed up, I couldn't take it...and even when I did, nothing absorbed.

Does she eat red meat? Spinach (that's probably a long shot...). Also, make sure she is getting folic acid along with Vitamin C (orange juice?) because those both are essential for iron absorption.

If you have any more questions, feel free to ask. :) Needless to say, I know a lot about iron, anemia, etc.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Green12 Enthusiast
Do you do the castor oil pack on your liver? That is where my ND suggested.

April, I forgot to comment on this.

I do my entire abdomen/torso area covering from the ovaries, over the stomach and abdomen area, up to under my boobs, and down over each side to get the spleen and etc.

Link to comment
Share on other sites
mftnchn Explorer

Julie, I need to try this when I am here since I didn't find castor oil in China. How do you apply it? Like put it on a towel with heat or something? How long do you put it on? I am wondering if I could do this while I do my ecoffee in the mornings and get another detox boost.

Link to comment
Share on other sites
aprilh Apprentice

Hey Sherry, Julie may do this differently but my ND told me to do the castor oil packs using a piece of wool type fabric. I found this at Walmart and bought about 2-3 yards for fairly cheap. She said to make sure it wasn't dyed. I guess this is the cleanest fabric with no fillers.

Then I soaked the fabric with the castor oil and placed on the abdomen. Cover with Saran wrap to protect your clothing and place hot water bottle on top.

She said you could also just rub the castor oil straight on your abdomen and do it that way.

I felt good the fist time I did it. But the next day I did it again and was also trying to detox by eating tons of cilantro and I had a terrible reaction. I believe I did too much at one time and my body couldn't handle all the toxins.

Link to comment
Share on other sites
aprilh Apprentice

Kassandra,

Thanks for those explanations. The doctor did think her ferritin levels were fine, but it seems on the low end of the "range" numbers.

I am going to have it retested - since those were a year ago.

So, is the test for Iron "stores" the same ? Is this a blood test too? Maybe I should see a hemotologist about it.

Thanks again!

April

Link to comment
Share on other sites
CarlaB Enthusiast

April, sometimes even the low end of normal needs treatment. I am being treated for low thyroid and only test at the low end of normal across the board on all thyroid tests.

Also, I feel horrible if I don't take iron ... my hemoglobin with iron is only 13, range starting at 12, so I'm still at the low end of normal with supplementation. My iron stores are at the high end of normal. Once doctor told me to stop supplementing because of the stores, but within a few weeks, I could hardly get out of bed.

The ranges are for the average person ..... they are to give us an idea .... I don't like to take them as black and white because they've never worked that way for me.

Link to comment
Share on other sites
aprilh Apprentice

I agree Carla. I guess I get a little leary because of the fact that iron can be bad in high doses too. And hard on the liver if taken too much. I don't think that is going to happen to her considering how low she gets, though.

She felt a little better this morning, but went to school with crutches like she did last year. It really causes her a LOT of pain.

She said it feels like someone is grabbing her leg and squeezing real hard. Poor thing...breaks my heart to see her in such pain.

Link to comment
Share on other sites
Green12 Enthusiast
Julie, I need to try this when I am here since I didn't find castor oil in China. How do you apply it? Like put it on a towel with heat or something? How long do you put it on? I am wondering if I could do this while I do my ecoffee in the mornings and get another detox boost.

Sherry, I use white cotton flannel fabric. April is right it can be purchased cheaply anywhere they sell fabric (Walmart, a hobby/craft store that has a fabric department). I think I got 2 yards or so. (There is also a disposable flannel pack that is out there, designed specifically for castor oil packs. You use for about 10 uses and then discard. This might be something that would work better for you while traveling?)

I found this link that explains basic procedure for the pack (there are a lot of informative sources out there):

Open Original Shared Link

I also use Edgar Casey Castor Oil, it's super high quality castor oil.

Castor oil stains, so I have a pretty elaborate set up :lol: I put visquene sheets down over my bed, then an old bed sheet, I lay down and put the prepared pack on ( I heat it before applying it in a steamer basket, or you can use a microwave, be careful not to get it too hot you don't want it to burn your skin) then I put a plastic trash sack over the pack, wrap up in an old towel, then put a heating pad on top of that to keep the pack heated, then I wrap up in an old blanket.

I have always been instructed to do the packs for up to 30 minutes, and I do 5 days in a row for about 6 weeks. This may vary from practitioner to practitioner based on your health issues.

I don't know if doing the pack at the same time as the enema would be advised, it might be too much for your system? Maybe check with your doc or practitioner.

Hopefully this all makes sense, if you have any questions let me know :)

She felt a little better this morning, but went to school with crutches like she did last year. It really causes her a LOT of pain.

She said it feels like someone is grabbing her leg and squeezing real hard. Poor thing...breaks my heart to see her in such pain.

April, so sorry your daughter is in so much pain :( . I hope she gets some relief very soon.

Link to comment
Share on other sites
CarlaB Enthusiast

Kassandra, you should check out the thread "medical supplies" at LN. Someone has free IV stuff she's not using anymore.

Link to comment
Share on other sites
confusedks Enthusiast
Kassandra,

Thanks for those explanations. The doctor did think her ferritin levels were fine, but it seems on the low end of the "range" numbers.

I am going to have it retested - since those were a year ago.

So, is the test for Iron "stores" the same ? Is this a blood test too? Maybe I should see a hemotologist about it.

Thanks again!

April

Wait, do you know *why* she is getting anemic? Has she been tested for Celiac? I would get it retested, and make sure they include ferritin, iron absorption, hemoglobin, RBC, hemacrit, etc. This is in a blood test. Yes, the test for iron stores (ferritin) is the same...blood test.

Her ferritin seems on the low end of normal, BUT like I said, that may be normal for someone her age. Babies are meant to have low ferritin levels, but a tall, bulky body builder should have much higher. Do you understand what I'm saying? It really needs to be calculated by a Hematologist. Like I said, mine should be around 150.

You may want to see a hematologist, they may be helpful. But, they will probably tell you to give her oral iron for a while and then see what happens. She is not critically low (unless things have changed drastically) so they won't need to do anything extreme (like Iron IV's.)

Link to comment
Share on other sites
confusedks Enthusiast

Is everyone taking a multi vitamin? I just took one after not having taken one in months and months and WOW! BAD idea! I am in SO much pain, it's not even funny. :( They're even kids vitamins! Ahhhhh!

Carla, Thanks for the info from LN. I will try to get ahold of it because I think I will end up needing some sort of IV something soon. Even if it's for my Iron IV's.

Link to comment
Share on other sites
dlp252 Apprentice
Is everyone taking a multi vitamin? I just took one after not having taken one in months and months and WOW! BAD idea! I am in SO much pain, it's not even funny. :( They're even kids vitamins! Ahhhhh!

I am supposed to be taking one...but I'm lazy and I'm tired of spending so much money on supplements, lol, so I stopped.

Link to comment
Share on other sites
Green12 Enthusiast
Is everyone taking a multi vitamin? I just took one after not having taken one in months and months and WOW! BAD idea! I am in SO much pain, it's not even funny. :( They're even kids vitamins! Ahhhhh!

I've taken a multi off and on, currently (and actually for a while now) I don't.

Obviously there is something in this vitamin that isn't agreeing with you, kids vitamins have a lot of added things in them don't they, to taste good?

Link to comment
Share on other sites
tabasco32 Apprentice

Hey everyone how are you?

Well I did another coffee enyma today and I have a few????

Um tingly feet, diarrhea that smells like skunk, hasn't happened since my brother ate those stupid nacho dorito chips in front of me, I can taste it, the coffee. I think I made it too strong. Some abdomin pain, small, sharp, prickly pain that's all.

Is this normal, and what happened to the second half of the eight cups of coffee I put in their? It didn't come out like the first. Was my butt thirst or what? Oh well any help on this would be great! Carla?

Okay got to go, standing here in my birthday suit and it's getting kind of drafty, not that you care but ,you know.

o8wq

opps wrong row

lisa

Link to comment
Share on other sites
CarlaB Enthusiast

Kassandra, I take a multiple from my LLMD. I take TONS of vitamins ... good thing, too because my husband had a cold, my son had the flu, and the secretary at the office had strep throat, and so far, I've not caught any of them! :D

Lisa, did you measure it when it came out? Please tell me no .... anyway, I don't know that there's any way to know whether it all came out or not. Sometimes most of it comes out, then a little while later the rest does. Don't worry about it.

The smelly diarrhea is probably just the coffee mixed with the toxins it pulled out.

Also, the stirring up of toxins can cause symptoms.

I use one quart of water and four tablespoons of coffee brewed for three-five minutes. You might even start out with less coffee than that ... maybe 2 tablespoons.

Link to comment
Share on other sites
confusedks Enthusiast
Obviously there is something in this vitamin that isn't agreeing with you, kids vitamins have a lot of added things in them don't they, to taste good?

These are not chewable...so no they don't taste good at all! Actually they're quite gross! I won't be taking them again. I used to take them all the time, but I guess not anymore.

Where's Andrea? Are you okay Andrea? ;)

Link to comment
Share on other sites
tabasco32 Apprentice

Thank you Carla,

Yeah I use 8 cups of coffee and 1 tablespoon per cup. That's what Dr. M says too do. Anyone here live in an apartment?

lsia

Link to comment
Share on other sites
AndreaB Contributor
Where's Andrea? Are you okay Andrea? ;)

I'm here. Just reading along. :)

Link to comment
Share on other sites
tabasco32 Apprentice

Okay so another bowel movement. It hit me suddenly. But this time it stunk stronger. It smelled like, like, tuna sandwiches. :huh:

Had some pink mucuos texture too.

lisa :mellow:

Oh nice to see you Andrea!

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
×
×
  • Create New...