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

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
      130,191
    • Most Online (within 30 mins)
      7,748

    Karen brewer
    Newest Member
    Karen brewer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
×
×
  • Create New...