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

All Of This Could Be Celiac?

chgomom

By chgomom
in Coping with Celiac Disease

Recommended Posts

chgomom Enthusiast
chgomom
Posted

OK...positive blood work, high related inflammation levels (c3c, c4c, and crp)

I have:

Joint pain

gas pains (some times even on an empty stomach)

the big D from time to time

constipation from time to time

weightloss (I was 318 5 mos ago, I am now 253, which isn't bad because of the weight, but to me its bad because of how I am lsoing it)

Salt bothers me (not already in food, but like if its sprinkled on top...WHY????)

I have to have meats with no antibiotics, or preservatives (very expesnive, but I get sick otherwise)

I get pains all over my body, even muscle twitches

Dizziness

Nausea

I run fevers from time to time

I get dehydrated, really easily, I mean really easily

I have DH on my face, although the rheumatologist wants be to get biopsied on the skin in a couple of plcaes because he said it could also be discoid lupus???

Most of the time I am falling on my face with exhaustion,

Then there are times that I can't get to sleep at all (what that heck is that?)

So...to make a long story short....my gp was a really winner when I went the other day. he said and I quote: "You went to a rheumatologist (my thought while he was talking: yeah winner because you weren't doing anything, he took the time and found something) I think you have a whole lotta nothing going on"

So I called the medical group, the head doc said it was insensitive and he concurs with the ER doc from last week. I owe it to myself to get the discoid checked out by a derm, but...and he said a big but....Celiac can really tear your system apart, and with as scary as it may be,,,all the thinsg you just told me, Sprue can cause?

Really, I was gluten free since June doing fairly well. Then my new GI doc had me start a challange, which is what landed me in the ER, 2 weeks ago. and I am still sick from it??

I hate to whine the same story thats been lamented about on here....but is Sprue really that wicked that it can do all that???? Wow.

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

This insidious disease can do all that and much more....... :(<_<

Karen

CarlaB Enthusiast
CarlaB
Posted

I had many of those symptoms, especially the dehydration, which even caused trips to the ER several times over the past 20 years.

Most importantly, you need to be sure you're 100% gluten-free.

After that, you sound very much like me. Dead tired, but when I go to bed, I can't fall asleep, included! Being gluten-free for me was not quite enough to turn my health around. I was just sick for too long and it wore my whole system down. I think it does all go back to my problem with gluten, but in the end it wore me out. I just read a book called Tired of Being Tired by Jesse Lynn Hanely MD. I highly recommend it to you.

Canadian Karen Community Regular
Canadian Karen
Posted

I know the feeling of absolute total exhaustion very well. I still get it. It particularly scared me one day when I was taking the kids to visit my mom in the city and I literally felt like I was going to fall asleep at the wheel on the highway......

Karen

CarlaB Enthusiast
CarlaB
Posted
I know the feeling of absolute total exhaustion very well. I still get it. It particularly scared me one day when I was taking the kids to visit my mom in the city and I literally felt like I was going to fall asleep at the wheel on the highway......

Karen

I thought that was normal until recently ...

taz sharratt Enthusiast
taz sharratt
Posted
I had many of those symptoms, especially the dehydration, which even caused trips to the ER several times over the past 20 years.

Most importantly, you need to be sure you're 100% gluten-free.

After that, you sound very much like me. Dead tired, but when I go to bed, I can't fall asleep, included! Being gluten-free for me was not quite enough to turn my health around. I was just sick for too long and it wore my whole system down. I think it does all go back to my problem with gluten, but in the end it wore me out. I just read a book called Tired of Being Tired by Jesse Lynn Hanely MD. I highly recommend it to you.

i had a couple of trips to the er too, also dehydration which was causeing severe C.

nikki-uk Enthusiast
nikki-uk
Posted
I hate to whine the same story thats been lamented about on here....but is Sprue really that wicked that it can do all that???? Wow.

Oh yeah,it's a really insidious disease alright.

Nasty,nasty disease which creeps up,and has a myriad of symptoms.

Regarding the fatigue,before dx ,my hubby would be in bed 20 out of 24 hrs a day.

He was so weak I'd have to support his head to take a drink :o

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

Celiac.com Sponsor (A8-M):


chgomom Enthusiast
chgomom
Posted
  • Author

Ok, I'm interested in hearing that I am not losing my mind, not about medicine men that cure autoimmune diseases *lol*

Canadian Karen Community Regular
Canadian Karen
Posted

Alfred,

Please stop spamming our board with ridiculous claims.....

Thank you.

Karen

nikki-uk Enthusiast
nikki-uk
Posted
Beleive me I saw it with my own eyes.

go to www.powerofraffael.com

All the same ,I think I'll pass.

TriticusToxicum Explorer
TriticusToxicum
Posted
CELIAC DISEASE

COMPLETLEY CURED

IN SYDNEY

Raffael says as he closed his eyes he could see the clouded areas of Miss Mona’s Intestines and with his mind power cleaned all of her system, working on her brain, stomach, intestines, etc.

You can watch the Testimony clip by visiting www.powerofraffael.com

Could you dial up your buddy Raffy and ask him to please stop staring at my half digested lunch. My rug needs a good power cleaning, can he help? <_<

TAKE A HIKE - no snake-oil salesmen allowed! :angry::angry::angry:

chgomom Enthusiast
chgomom
Posted
  • Author

ALFRED!

How dare you! Want to stay sick? You have lost your mind, I read up on this gentleman and he is being investigated for fraud in two different countries! How dare you!

Nobody here WANTS to stay sick....and EVERYONE here does every last thing imaginable short of getting a new immune system to stay helathy. You have no right, no background and no place saying things like this.

This HEALER is a dog and pony show, nothing more that the admission to get in to where he's set up shop and peddle his ridiculous garbage.

chgomom Enthusiast
chgomom
Posted
  • Author

Google him, and several radio programs in his native country.

Stop advertising for some dog and pony magic show. PLEASE.

Narrow minded? You have no clue.

What I don't buy into, is a dog and pony show that is capitalizing on a disease that is just now coming to the forefront of the medical community and gaining attention and capitalizing on people's misfourtunes.

It's low.

Now go away, we don't want you here.

TriticusToxicum Explorer
TriticusToxicum
Posted
I have ggogled him several times.

did it hurt?

lonewolf Collaborator
lonewolf
Posted

If you really wanted to just help people by giving the information, you wouldn't have pasted the same story in almost every section and in the middle of other topics. THIS is what WE especially don't want.

Guhlia Rising Star
Guhlia
Posted
OK guys I give up

Good, BYE!!! Don't let the door hit you on the way out!!!

chgomom Enthusiast
chgomom
Posted
  • Author

You mean, he is a miacle man because he has people meditate and for some reason that helps conditions.

Wow! He is the second coming, meditation eases ailments. Go figure.

STOP IT!!!!!!!!!!!

lindalee Enthusiast
lindalee
Posted
OK...positive blood work, high related inflammation levels (c3c, c4c, and crp)

I have:

Joint pain

gas pains (some times even on an empty stomach)

the big D from time to time

constipation from time to time

weightloss (I was 318 5 mos ago, I am now 253, which isn't bad because of the weight, but to me its bad because of how I am lsoing it)

Salt bothers me (not already in food, but like if its sprinkled on top...WHY????)

I have to have meats with no antibiotics, or preservatives (very expesnive, but I get sick otherwise)

I get pains all over my body, even muscle twitches

Dizziness

Nausea

I run fevers from time to time

I get dehydrated, really easily, I mean really easily

I have DH on my face, although the rheumatologist wants be to get biopsied on the skin in a couple of plcaes because he said it could also be discoid lupus???

Most of the time I am falling on my face with exhaustion,

Then there are times that I can't get to sleep at all (what that heck is that?)

So...to make a long story short....my gp was a really winner when I went the other day. he said and I quote: "You went to a rheumatologist (my thought while he was talking: yeah winner because you weren't doing anything, he took the time and found something) I think you have a whole lotta nothing going on"

So I called the medical group, the head doc said it was insensitive and he concurs with the ER doc from last week. I owe it to myself to get the discoid checked out by a derm, but...and he said a big but....Celiac can really tear your system apart, and with as scary as it may be,,,all the thinsg you just told me, Sprue can cause?

Really, I was gluten free since June doing fairly well. Then my new GI doc had me start a challange, which is what landed me in the ER, 2 weeks ago. and I am still sick from it??

I hate to whine the same story thats been lamented about on here....but is Sprue really that wicked that it can do all that???? Wow.

I just read on the scd info board about a salt issue - you say you are having problems with that--

"salted nuts have starch on them. Salt can have DEXTROSE put into it. Most salt w/ iodine in it has dextrose in it. So this can be a problem. Dextrose is illegal on the scd diet." They recommend getting the iodine from vitamins and use sea salt. I have been using Himalayan Salt.

For me, the sleep issue got better the longer I was gluten free. Hope you feel and get better.

Archived

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

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


  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748
    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.