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

I Think Im Cured !


jimbo006

Recommended Posts

jimbo006 Newbie

6 years ago all my joints went stiff -took until lunch time b4 i could do anything normally

after a week they had me in to hospital -blood test after blood test

they then decided on an gastoscopy (tube from top) and did a biopsy of my lower intestine

im not saying im a cured coeliac - just that i was perhaps mis diagnosed in the first place

research shows that in America 1 : 10 might have coeliacs , but if i were to ask 1000 people here in UK ,doubt i would get 2


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



Celiac.com Sponsor (A8-M):



nikki-uk Enthusiast
6 years ago all my joints went stiff -took until lunch time b4 i could do anything normally

after a week they had me in to hospital -blood test after blood test

they then decided on an gastoscopy (tube from top) and did a biopsy of my lower intestine

im not saying im a cured coeliac - just that i was perhaps mis diagnosed in the first place

research shows that in America 1 : 10 might have coeliacs , but if i were to ask 1000 people here in UK ,doubt i would get 2

1 out of 100 undiagnosed

What did your small bowel biopsies show??

I don't doubt you have candida - just reinforcing the point that once a coeliac always a coeliac.

jimbo006 Newbie
1 out of 100 undiagnosed

What did your small bowel biopsies show??

I don't doubt you have candida - just reinforcing the point that once a coeliac always a coeliac.

im not disputing that Nikki - just saying i might be cured !

blueeyedmanda Community Regular

But if you were a diagnosed coeliac there is no "cure" You will go back to feeling normal after you eat gluten-free for a while but there is never a cure. If you were to start eating gluten again in a little bit of time you will end back up where you were.

jerseyangel Proficient

Hi Jimbo,

I think what everyone would like to know, since you brought it up, is how you were diagnosed with Celiac.

We care, and don't want to give others the impression that Celiac Disease can be cured. It can be managed/treated with the gluten-free diet, but never cured.

We also care about you, and if you have Celiac and continue to eat gluten, you are incurring damge to your body whether you are having symptoms or not. This damage and inflammation can lead to serious complications like cancer, so it's nothing to fool around with.

Lisa Mentor

Maybe Jimbo is going through a very short period of remission. But, cured? No.

Tim-n-VA Contributor

But it is possible to be misdiagnosed and later find out you never had celiac which is what his last post stated.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
But it is possible to be misdiagnosed and later find out you never had celiac which is what his last post stated.

This is true ... but he's never really said whether he was biopsied and what the results showed.

jerseyangel Proficient
This is true ... but he's never really said whether he was biopsied and what the results showed.

Exactly--he never said what the results of his blood/biopsy were. He also said he "may" be cured--so it's important to first know the diagnosis details. It may be period of remission, enough healing has taken place so he's getting away with the gluten, or he was never actually diagnosed in the first place.

blueeyedmanda Community Regular

I am just afraid of newly diagnosed getting the wrong idea from him and doing further harm to their bodies.

cruelshoes Enthusiast

While I would love to believe that someone is cured, I have a hard time buying it. I would only be convinced in the presence of a documented case of celiac based on bloodwork and biopsy, and then a negative bloodwork and biopsy result after consuming gluten for a long period of time. I mean a biopsy with lots of samples, too. Without that, I don't think the true picture is known. Many people are silent celiacs and never experience any symptoms. Perhaps the symptoms could morph over time and a person who was once symptomatic would become asymptomatic. But we all know that the absence of symptoms does not equal no damage.

Jimbo - i wish you the best of luck on whatever you decide to do, but I think that reintroducing gluten in the diet of a confirmed celiac is a very risky proposition.

Fiddle-Faddle Community Regular

Jimbo, the way I see it, the damage caused to your intestines (which is what earned you the celiac diagnosis in the first place, that's what they looked for when they scoped you) healed during your 6 years on the gluten-free diet. This is exactly what is supposed to happen on a gluten-free diet.

Now that you no longer have a leaky gut, the gluten protein is no longer getting into your bloodstream, so your immune system is no longer attacking your joints. But I'm afraid the others on this thread are correct--once a celiac, always a celiac. As you continue to eat gluten, the villi in your intestines will erode, just as they did before your first bout with celiac. And eventually, you will have a leaky gut again, and your celiac symptoms will return, if you continue to eat gluten.

Relapses after a remission tend to be much worse than then initial presentation. And studies show that intestinal damage occurs with as little as 1/16th of a piece of bread per day. You're taking an awfully big risk by going back on gluten.

If you had not been diagnosed by biopsy, I would say that you were right, candida was the problem all along. But diagnosis by biopsy is considered incontrvertible.

It's your life, and you have the right to live it any way you want. But I sure hope you have a lot of money put aside, because insurance companies have used celiac as an excuse to deny coverage. In your case, refusing the appropriate treatment for an incontrovertible diagnosis provides the insurance company the right to deny you coverage when your symptoms return.

jimbo006 Newbie

would be happy to discuss one to one phone /e-mail with credited users - but how does one give out personnel ID privetley ???

p.s i was possitevely diagnosed by specialist (but never had 100% faith in his opponion)

doctors can be wrong ! - maybe he wasn't ,but its worth a go -

Jimbo, the way I see it, the damage caused to your intestines (which is what earned you the celiac diagnosis in the first place, that's what they looked for when they scoped you) healed during your 6 years on the gluten-free diet. This is exactly what is supposed to happen on a gluten-free diet.

Now that you no longer have a leaky gut, the gluten protein is no longer getting into your bloodstream, so your immune system is no longer attacking your joints. But I'm afraid the others on this thread are correct--once a celiac, always a celiac. As you continue to eat gluten, the villi in your intestines will erode, just as they did before your first bout with celiac. And eventually, you will have a leaky gut again, and your celiac symptoms will return, if you continue to eat gluten.

Relapses after a remission tend to be much worse than then initial presentation. And studies show that intestinal damage occurs with as little as 1/16th of a piece of bread per day. You're taking an awfully big risk by going back on gluten.

If you had not been diagnosed by biopsy, I would say that you were right, candida was the problem all along. But diagnosis by biopsy is considered incontrvertible.

It's your life, and you have the right to live it any way you want. But I sure hope you have a lot of money put aside, because insurance companies have used celiac as an excuse to deny coverage. In your case, refusing the appropriate treatment for an incontrovertible diagnosis provides the insurance company the right to deny you coverage when your symptoms return.

jimbo006 Newbie

p . s

its night time i dark dingy England so goodnight and 'have a nice day'

TTFN

dlp252 Apprentice
p.s i was possitevely diagnosed by specialist (but never had 100% faith in his opponion)

doctors can be wrong ! - maybe he wasn't ,but its worth a go -

I don't know, it's so very hard to get doctors to actually diagnose Celiac that it seem unlikely he/she would have given that diagnosis lightly!

If you want to converse privately with someone you can try sending them a private message (PM).

nikki-uk Enthusiast
I don't know, it's so very hard to get doctors to actually diagnose Celiac that it seem unlikely he/she would have given that diagnosis lightly!

Yes Donna I agreee ....if the biopsy slides showed villous atrophy then there are very, very few other causes (Candida is NOT to my knowledge one of them)

Not wanting to sound aggresive -- just want to get the facts straight :)

CarlaB Enthusiast
if the biopsy slides showed villous atrophy then there are very, very few other causes

He still hasn't confirmed this either way.

If his doctor clinically diagnosed him, then the diagnosis could have been wrong .... I'd still like to know whether he had villous atrophy shown in a biopsy.

ravenwoodglass Mentor
would be happy to discuss one to one phone /e-mail with credited users - but how does one give out personnel ID privetley ???

p.s i was possitevely diagnosed by specialist (but never had 100% faith in his opponion)

doctors can be wrong ! - maybe he wasn't ,but its worth a go -

If you go up to a persons name and click on it a pull down menu will appear. With that you can send them a PM, personal message. When you sign in to the board at the top it says 'my controls' near that is a icon for messages. They will also sometimes pop up when you get a reply.

Nancym Enthusiast

Smelly gas was always one of my symptoms.

blueeyedmanda Community Regular

I always had GI problems, the D, and then a few months before my diagnosis, I was having very bad pain in my left side. I was like a different person, my moods were completely off.

Blondie Apprentice

Don't believe anything this guy says, i've been around the internet long enough to know when someones either making a practical joke or trying to sell something

Genie75 Rookie

I had thought I was cured too several times. Be very careful. It is easy to think that when we are "better" and not having any problems, that we can eat glutens again. I agree getting rid of sugar and candida helps tremendously for digestive issues. But be wary, your symptoms may crop up again if you go back to eating glutens. I have noticed that my gluten symptoms take time to come back, but eventually they do. And when they do, I so regret eating the glutens again, cause it takes so long to recover once they're done their damage.Best to you

having spent 6 years as a confirmed coeliac , i always hoped and believed there was a cure for me

having tried homeapathy [waste of time and money] i was given a number of a kaneiseilogist [weird to explain what they do - have faith]

after my first visit i was told that i had candida - a yeast infection of the intestine

The symtoms are very similar to coeliacs

had to cut sugar out of my diet completetly [best i could]. Suddenly my taste buds changed - I actually tasted food

together with a sugar fast i was prescribed some pills [PERMATROL]

now ,after 4 months i can get away with flour -although i can do smelly farts

when the farting starts i ease off the flour

my stalls (sh*t] are nice and healthy now as opposed to runny

HOPE THIS HELPS AT LEAST ONE MORE UNNESSARY SUFFERER !

Leslie-FL Rookie

I read an article recently about probiotic research and it suggested that imbalances in gut flora may be associated with food intolerances, but it also mentioned that so far, researchers only understand something like 1-2% of the microflora in our bodies.

My feeling is that if doing everything you know to help keep those bacterias in balance helps one to feel better, that is great and it's worth doing, and it may even lessen the effects of accidental gluten ingestion, BUT I wouldn't purposely start eating glutens again just because I felt better. I used to occasionally have good days in between all the bad ones back before I went gluten-free, too, but it didn't mean I wasn't gluten-intolerant on those days.

Electra Enthusiast

I know it's dangerous to have this kind of thinking, but if jimbo006 is set on thinking he is cured then I think the only advice we can give is to have jimbo006 be closely monitored by a doctor. If you are determined to eat gluten again the "safest" way to do that is under a doctors supervision. You will need routine blood tests and probably biopsies every few months for at least a couple of years. Nothing may show up, but in order to make sure you are trying your best to stay healthy you owe it to yourself to at least keep testing in an attempt to see if your body is reacting. Sure this method isn't as safe as being gluten free, but it's sure better then just giving up a gluten free lifestyle and saying "I think I might be cured".

Good Luck to you and I really hope you are right in your belief that you were misdiagnosed

Blondie Apprentice

If Jimbo is joking (which I am fairly sure he is) I hope for his sake that he realizes what the complications of coeliac is, what with the cancer and infertility and all. Just because you don't experience symptoms or have any damage on the outside, the villy in your small bowel is damaged

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,904
    • Most Online (within 30 mins)
      7,748

    AnneSN
    Newest Member
    AnneSN
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.