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 Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

aprilh Apprentice
aprilh
Posted

Sherry,

Sorry for the bad luck day. Bad luck comes in 3's so you should be good for a while. ;)

Everyone,

I called that LED referral and the lady that does it is no longer there!!!! :o Darn! Thought I found someone. I left my name and asked if they knew of anyone who does it to call me.

I too, LOVE the charcoal. I was scared to take it at first, just because I react to so many things - but It is GREAT! I will have it on hand forever.

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
aprilh Apprentice
aprilh
Posted

I have to admit, I have trouble following the jumbled up paragraph. I just helped one of my co-workers rewrite an important email yesterday because of that very reason. The recipient was having trouble following what it was she actually needed. So, we broke it down into paragraphs and that seemed to help. :)

mftnchn Explorer
mftnchn
Posted

Thanks, glad to know that I'm not the only one. I have had to skip posts sometimes, and I do really want to follow and understand everyone on this thread so I can contribute where I can.

The other thing that really helps me is typing with normal use of capitalizations. With all lower case, I can't see the beginning and end of sentences (which also helps break things up for me), and I just get lost in the post.

Green12 Enthusiast
Green12
Posted
One is called Good N Natural, and it is 260 mg per capsule, and the other is Nature's Way, and it is 280 mg per capsule. So my dose is 3 in the evening, and I can also take extra when I need it for symptoms.

I think this is one supplement that is pretty forgiving, more just absorbs more.

It is so super that it is helping you so much! Now if you can just get at what is making you so toxic.

Sherry

Thanks Sherry :)

Sorry about your challenging day yesterday, hope today is much better.

I have to agree with Andrea, sounds like your appt was very thorough yesterday, and so many things you had been questioning and struggling with were addressed :)

Look forward to updates.

julie what brand do you use

Miamia, I've been using KAL.

How are you doing??

Later, my daughter was looking in my purse and my keys were there! There was a little pocket that was so hidden that I didn't even find it or feel the keys when I had emptied my purse!

:o

:lol:

:D

Everyone,

I called that LED referral and the lady that does it is no longer there!!!! :o Darn! Thought I found someone. I left my name and asked if they knew of anyone who does it to call me.

Darn is right! Keep looking, something will come up i just know it.

I have to admit, I have trouble following the jumbled up paragraph.

I do too, I didn't say anything because I didn't know if that would be rude :huh:

rpm, just break up the sentences a little for those of us with brain issues.

mftnchn Explorer
mftnchn
Posted

Carla,

Were you on three months of levaquin without a break? My doc isn't so familiar with it for lyme, and he looked it up and said he could write the prescription for 28 days. I found a little info from Dr. B about it, which said at least a month and three months for really sick patients.

Sherry

CarlaB Enthusiast
CarlaB
Posted

Sherry, the prescription was able to be renewed for five months! My LLMD kept me on it until my symptoms resolved, then he switched me to Rifampin for another six weeks just to be sure. When I had no reaction at all to the Rifampin, he took me off it, too.

I felt bad every day the first six weeks on it, then saw improvement. If you are like me, 28 days will hardly give you an idea of how you will react to it. My LLMD says it takes 30 days just to see how you will react (for any drug).

aprilh Apprentice
aprilh
Posted

Sherry,

Why does that doc think you are definate celiac?

April

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

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted
Sherry, the prescription was able to be renewed for five months! My LLMD kept me on it until my symptoms resolved, then he switched me to Rifampin for another six weeks just to be sure. When I had no reaction at all to the Rifampin, he took me off it, too.

I felt bad every day the first six weeks on it, then saw improvement. If you are like me, 28 days will hardly give you an idea of how you will react to it. My LLMD says it takes 30 days just to see how you will react (for any drug).

Hmm. So you herxed for 6 weeks? Well, I think he'll renew if he thinks it will/is working.

I'm not anxious to herxing the whole time I am in the USA! :huh:

mftnchn Explorer
mftnchn
Posted

April, I asked him about it because I said I was wishing I had a more firm diagnosis. He said it was firm enough. He went on to say that he has had people (lots of kids) that have had biopsies that he suspects as celiac, and he said he has not had even 1 come back with a positive biopsy!! But Enterolab has picked up a lot of them that clinically have then been helped so much with the gluten-free diet. He agrees with Dr. Fine that there has to be a lot of damage for the ttg?? to leak out into the bloodstream and be picked up by tests.

He also said that personally he has been gluten-free for 12 years. Maybe once a year at a special occasion he will get a little gluten, and he doesn't react. But he said he is so convinced that it is an issue he doesn't go back to eating gluten. His mother died from a type of cancer that only celiacs get.

He said that positive Enterolab, symptoms, changes on the diet, and my gene type is evidence enough that I should never eat gluten.

mftnchn Explorer
mftnchn
Posted

Carla, I just looked again at the prescription he wrote, and it is written for 28 days, but refill is "prn" or as needed. So it looks like I can stay on it for awhile. I see him the first part of March but will be in regularly for IV's meantime. My LLMD is only 5 minutes away from where I am living this time!!

CarlaB Enthusiast
CarlaB
Posted

Sherry, as you know, everyone is different. i wasn't as bad as I was in the beginning, I was still somewhat functional, but needed a lot of rest/sleep (both). I could still make it to the grocery and cook dinner, except for during my monthly flares ... I was already in this bad of shape when I started it ... it was just a slight worsening of symptoms before I saw improvement.

My main point was, stay on it if it's doing something. Bart can be an easy coinfection if you treat it long enough and hard enough the first time. Better to stay on a strong drug like Levaquin a little longer then you're comfortable with than to get on it, get off it too early, and start over. :)

mftnchn Explorer
mftnchn
Posted

Yes that makes absolute sense. It's good to know that you were just a bit worse, that I can handle--I am dealing with that anyway off and on, and already am dealing with it on the new drops. I'm quite foggy this morning.

aprilh Apprentice
aprilh
Posted

Does anyone else feel this way? I am 34 years young but I feel and look like I am much much older! I wake up with my eyes all red and puffy. My skin is looking more wrinkly in my face. I have a few grey hairs that I need to cover up but don't know how.

I know this is a symptom of what's going on inside. I don't want to look this way!!!

Rpm999 Contributor
Rpm999
Posted

haha i'm only 17 but look terrible myself, my skin looks off color and sickly, eyes always puffy....obviously never had grey hair, but my hair got very thin and dull looking

oh and sorry about the paragraphs, i know exactly what you mean, i struggle to read things like that but wasn't even realizing i was doing it

CarlaB Enthusiast
CarlaB
Posted
Does anyone else feel this way? I am 34 years young but I feel and look like I am much much older! I wake up with my eyes all red and puffy. My skin is looking more wrinkly in my face. I have a few grey hairs that I need to cover up but don't know how.

I know this is a symptom of what's going on inside. I don't want to look this way!!!

If it makes you feel any better, people are amazed at how I look now ... these are people who saw me when I was sick, but not so often that they don't notice the subtle changes.

When you get healthier, you will look healthier.

No one ever thought I looked "sick", but now they certainly notice I look better .... even my hair is different (texture, thick again). I'm 44, btw.

confusedks Enthusiast
confusedks
Posted

Sherry,

I'm sorry you had a rough day, but it does sound like you had a great appt. It's interesting about the Celiac thing. My LLMD agrees with me about NOT going on a gluten challenge. Also, it will be an interesting conversation when we talk about the results that I had about me still getting gluten. It was off the charts high, like as high as someone who reacts to gluten, but hasn't taken it out of their diet yet! :huh:

And, my grandma has it, but doesn't follow a gluten-free diet (LONG story, lol). And I highly suspect my dad has it too, but won't get tested. <_<

Also, I was going to say something about RPM's post too! LOL! I can't read people's posts on this board in other parts because they aren't paragraphed well a lot of times.

mftnchn Explorer
mftnchn
Posted

Thanks RPM that helps so much!

Yep, me too. I am hoping to look a little younger...but hey, what can you expect when you're in your 5th decade? LOL

Sherry

CarlaB Enthusiast
CarlaB
Posted

Umm, fifth decade? I'd rather say in my 40's! Yikes!

tabasco32 Apprentice
tabasco32
Posted

Hi everyone,

Yeah sometimes I look sickly and sometimes I don't. Especially when I can't wear makeup. Does anyone know of a good non toxic makeup to wear that doesn't irritate the eyes.

Hey Rachel I hear you wear makeup now. Is it good to wear?

Today I feel blah. Ryan, my mom's husband is smoking pot again in the house. I mean he smokes it in my moms bathroom with the door shut the window opened and the fan on, but STILL, come on now, I can still smell it, even taste it, GROSS.

Will I ever get better with that nasty smell. So I decided to get up and come to the library and see what is going on here.

I need to move out.

lisa

Green12 Enthusiast
Green12
Posted
Does anyone else feel this way?

Yes, very much so April.

More so in the last 5-7 years from me, when my health has really declined rapidly.

I have often thought if I feel like this in my younger years, what is it going to be like when the natural aging processes really kick in in the 50s, 60s, and 70s?!?!

Green12 Enthusiast
Green12
Posted
Today I feel blah. Ryan, my mom's husband is smoking pot again in the house.

Can you tell him not to smoke it in the house or around you, that it isn't good for you when you are trying to heal??

Some of us on the forum have had really good luck with Everyday Minerals, I don't react to it like I did Bare Minerals.

Green12 Enthusiast
Green12
Posted
oh and sorry about the paragraphs, i know exactly what you mean, i struggle to read things like that but wasn't even realizing i was doing it

Thanks Rpm, this is so much better and very helpful :)

tabasco32 Apprentice
tabasco32
Posted
Sheeesh Donna....what were you thinking?? :P

Luckily I got self restraint and would NEVER think of doing such a thing! :lol::lol:

ditto.

AndreaB Contributor
AndreaB
Posted

Ugh, wasn't getting email notifications again.

I caught up though.

April,

Hope you are able to be referred to someone else. :(

confusedks Enthusiast
confusedks
Posted
Hi everyone,

Yeah sometimes I look sickly and sometimes I don't. Especially when I can't wear makeup. Does anyone know of a good non toxic makeup to wear that doesn't irritate the eyes.

Today I feel blah. Ryan, my mom's husband is smoking pot again in the house. I mean he smokes it in my moms bathroom with the door shut the window opened and the fan on, but STILL, come on now, I can still smell it, even taste it, GROSS.

About the make-up, I agree with the Everyday Minerals. It's GREAT stuff! It's really funny because my stempmom works for Loreal Paris, she runs the whole salon division in New Zealand and I told her that I like mineral make-up and she was really offended! LOL! It was very funny!!!

About the pot thing, I TOTALLY GET IT! My brother is now in rehab because it was such a problem for him, BUT the smell is just awful! <_< I would suggest talking to him or your mom about it and see what they say.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,878
    • Most Online (within 30 mins)
      7,748
    Donna petrie
    Newest Member
    Donna petrie
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How long after being diagnosed with Celiac do you feel better?

      By trents · Posted

      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      How long after being diagnosed with Celiac do you feel better?

      By Nathan. · Posted

      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Recent blood test results check in - TTG- IGA

      By Scott Adams · Posted

      Most likely cross-contamination I believe.
    • cristiana
      How long after being diagnosed with Celiac do you feel better?

      By cristiana · Posted

      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Inhaler problem

      By knitty kitty · Posted

      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...