My Sister Foud Someone Who Claims. . .

[ptkds]

My sister went to some quack chiropractor and talked to him about me and my family having celiac disease. This guy claimed he could cure allergies, including celiac. From all that I have read, it can't be cured and it isn't even an allergy! I pointed that out to her, but I don't think she believed me.

So is finding ppl like this common?? I am just wondering how often I will have to hear this stuff for the rest of my life!?!

ptkds

[jerseyangel]

Hi

Forgive me for being blunt, but anyone who claims they can "cure Celiac" dosen't know what they're talking about.

Since Celiac is an autoimmune disease and not an allergy, there is no cure. All we have is the gluten-free diet--and that is the treatment--not the cure. We have to be on the diet for life.

We, of course, will run into people like that from time to time. What we can do is be armed with the facts--beyond that--I don't know!

[happygirl]

1. Celiac is not an allergy, it is an autoimmune disorder.

2. Celiac cannot be cured, at this point. Research is still figuring out why some people have it. but that is another discussion.

3. yes, there are people like that out there. (you might also hear of people who "had" celiac as a child and "outgrew" it. if that is the case, it was never Celiac. or, it might be, and their symptoms lessened, but the damage is still occurring and they are still Celiacs and just don't know it, because of poor medical advice) Its not often...but its all enough just to be annoying

[super-sally888]

Oh yes!

My sister's son 6 yo son was diagnosed along with celiac with numerous other food intollerances (very symptomatic, anaemia, and behavioral difficulties). He saw a chiropractor and kinesiologist and according to my sister he is ok now and can tolerate the foods he couldn't before.... he really is like a new child.... So maybe there is something there ... for children - after all their immune system is still developing..... they are still observing him very closely and he does eat a very healthy (mostly fruit and veges) largely organic diet

Another sister also diagnosed with celiac through blood testing claims that she has some supplements that mean she can tolerate gluten. However, this sister is very thin and my other sisters think she is very unwell. She won't listen.. She and her children also have all sorts of food problems... and she is not as careful as she should be.... I think in adults reversal would not be likely...

I don't live close to them (other side of the world) so can't see the day to day situation... and I have only just realised that I have a problem with gluten (though have had thryoid problem for years)... so this is all learning for me...

Am sure there are many claims. But ultimately we have to listen to ourselves and our bodies and be responsible for our own health.

Sally

[aikiducky]

Sally, as to your sisters son... children often are asymptomatic once they get a bit older, that's why they used to think that celiac could be outgrown. It's sometimes called the honeymoon period. The thing is that childrens bodies still heal very rapidly and so they might be able to heal the damage that gluten does at the same rate as the damage happens, and not get any symptoms. That is, until they get older... many people who thought they'd outgrown celiac as a child will start getting ill again in their 20s or 30s.

Long story short I think they should at the very least keep a very close eye on him. And if he was diagnosed by biopsy, he should be back on gluten free asap.

Pauliina

[Guhlia]

My sister went to some quack chiropractor and talked to him about me and my family having celiac disease. This guy claimed he could cure allergies, including celiac. From all that I have read, it can't be cured and it isn't even an allergy! I pointed that out to her, but I don't think she believed me.

So is finding ppl like this common?? I am just wondering how often I will have to hear this stuff for the rest of my life!?!

ptkds

You are right in thinking that it cannot be cured. It is an autoimmune reaction that causes your body to attack your intestinal villi upon consumption of gluten. There is no way to prevent this immune system reaction other than remaining gluten free for life. Once diagnosed properly with Celiac Disease, there is no recovery or remission, it is there to stay for life. Children and teenagers can appear to be cured, but they are still doing intestinal damage if gluten is consumed. Your sister probably believed him because A) she's not educated about Celiac and she loves you and hopes that you and your family can be cured. If she presses the issue, I would kindly thank her for the concern and tell her that you really appreciate her looking out for you and your family. Then explain that you have already looked into cures and there are none, your doctor has verified this for you. Tell her you understand that she just wants you to get better and that means a lot to you, but the gluten free diet really isn't bad and you're actually healthier than you were before. Hopefully that will help her to understand. Some people won't ever get it.

[Guest nini]

I had a chiropractor/kinesiologist swear that he could cure me and my daughter from Celiac with Kinesiology... I DON'T THINK SO... I went once to see what he was talking about (free first visit) and then when he told me how much it was going to cost I about choked! I'm not going to pay that much money for something that more than likely is just hooey. (I truly believe in chiropractic and that kinesiology has it's benefits, but NOT to cure Celiac) I can't remember the specific technique he called it, but I am a skeptic as far as that is concerned.

[Saz]

I agree with everyone else. There is as of yet no cure, although supodely some scientists are trying to find a cure. Also it is most definetely true that your symptoms can become less as you get older. I have never been very sensitve however since I was about 15/16 I have been able to eat alot of gluten without getting the slightest bit ill. However I still have a limit. Since been only having tiny amounts of gluten from August this year I have discovered that all though It didnt make physically sick, I seem be more Co-ordinated when I dont eat gluten. I have just figured this out after I had a tiny amount on the weekend and had the most unco of days yesterday.

Sorry I just went way off topic, Personally I think this guy is telling porkys.

[bluejeangirl]

My sister went to some quack chiropractor and talked to him about me and my family having celiac disease. This guy claimed he could cure allergies, including celiac. From all that I have read, it can't be cured and it isn't even an allergy! I pointed that out to her, but I don't think she believed me.

So is finding ppl like this common?? I am just wondering how often I will have to hear this stuff for the rest of my life!?!

ptkds

My husband being a Chiro and most of our friends being Chiro's and going to conventions year after year you soon realize the profession has its quacks. There's one guy who practices in our city that would say something like this because he thinks he can cure anything. The sad thing is he's all personality and has a radio show on sat. mornings. He has a hugh practice and people love him. I think thats why he gets away with it. People still want to believe in something and you usually do feel better after an adjustment. It's the same deal with certain church leaders and you see the devastating results after one falls. But people are forgiving and life goes on.

Gail

[chrissy]

sally, a really easy way to set the record straight, would be for your sister to do follow up blood work on her child----that is, if he was diagnosed by bloodwork.

[phakephur]

It used to be thought that celiac was a childhood disease that would resolve spontaneously with age. Now the gospel is that once you have it, you have it for life. We see that over and over again on this board.

I've been wondering for a while at what point this shift took place.

Can someone point me to the research which shows that a person can never be cured or go into permanent remission? Please don't tell me to look it up on the web. My question goes to any poster who has stated as undeniable fact that celiac is a permanent condition. What clinical studies show this to be true?

Thanks in advance.

Sarah

[kbtoyssni]

My chiropractor suggested something similar since I don't have an official diagnosis (diagnosed myself through dietary response) so he was suggesting that maybe I didn't have celiac disease and it was my back out of whack that was causing my problems. Which I doubt since I had more than just stomach issues. I said no way.

[Ursa Major]

It used to be thought that celiac was a childhood disease that would resolve spontaneously with age. Now the gospel is that once you have it, you have it for life. We see that over and over again on this board.

I've been wondering for a while at what point this shift took place.

Can someone point me to the research which shows that a person can never be cured or go into permanent remission? Please don't tell me to look it up on the web. My question goes to any poster who has stated as undeniable fact that celiac is a permanent condition. What clinical studies show this to be true?

Thanks in advance.

Sarah

Sarah, I will try to find the evidence. In the meantime, I have read enough stories by people here, and in books by serious researchers like Dr. Green, that have me convinced that you really don't outgrow celiac disease. Many times have I read about a child being diagnosed, getting better and considered cured. Only to develop severe health problems down the road, most often starting around the age of 20, sometimes earlier, sometimes later, and sometimes much, much later.

And I am talking serious autoimmune conditions here, which often took years to eventually be accurately diagnosed as related to celiac disease. By then often permanent damage was done.

The problem with people thinking you can cure celiac disease is, that it is genetic. You absolutely cannot 'cure' (or change) somebody's genes. So, a chiropractor claiming he can cure celiac disease means, that he must think he is god, being able to change people's genes through chiropractic. Which obviously is preposterous.

When I saw my naturopathic doctor for the first time a few months ago, I told him about all of my intolerances. He told me right at the beginning, that he didn't think I'd have most of those for life, that we can possibly cure them. With the exception of the gluten intolerance, since it is genetic. He made perfect sense and sounds like a reasonable man. That's why I chose to keep seeing him.

[chrissy]

ursula----i sure hope you are able to cure some of your intolerances!!!

sarah---

even though you have to be genetically predisposed to have celiac-----not everyone that has the genes becomes celiac. something has to trigger the disease. i just hope that one day maybe they can figure out the trigger---and then maybe figure out how to turn it back off.

kevin and i both test negative for celiac, although we are aware that at least one of us carries the gene. we also know that ian carries the gene, but does not have the disease. i wonder why it was triggered in our girls but not in ian and (kevin or I).

[phakephur]

Sarah, I will try to find the evidence. In the meantime, I have read enough stories by people here, and in books by serious researchers like Dr. Green, that have me convinced that you really don't outgrow celiac disease. Many times have I read about a child being diagnosed, getting better and considered cured. Only to develop severe health problems down the road, most often starting around the age of 20, sometimes earlier, sometimes later, and sometimes much, much later.

All -

To be clear, I don't dispute the veracity of the statement "celiac can't be cured", I'd just like to know where that information came from, particularly since it used to be thought that the opposite was the case, and also because it is stated so frequently on this board.

That said, I do believe that "gluten free for life" is the best and safest advice for anyone ever diagnosed with celiac.

Sarah

[Jestgar]

World J Gastroenterol 2006 November 7;12(41):6585-6593

Celiac disease

Luis Rodrigo

(a nice review)

J Immunol. 2006 Sep 15;177(6):4178-86.

Gliadin-specific type 1 regulatory T cells from the intestinal mucosa of treated celiac patients inhibit pathogenic T cells.

* Gianfrani C,

* Levings MK,

* Sartirana C,

* Mazzarella G,

* Barba G,

* Zanzi D,

* Camarca A,

* Iaquinto G,

* Giardullo N,

* Auricchio S,

* Troncone R,

* Roncarolo MG.

(wherein they show that cells from the intestine of a treated Celiac still respond to gliadin)

Gastrointest Endosc Clin N Am. 2006 Apr;16(2):317-27.

Monitoring nonresponsive patients who have celiac disease.

* Krauss N,

* Schuppan D.

(a discussion of refractory celiac disease)

Scand J Gastroenterol. 2006 Apr;41(4):408-19.

Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines.

* Drago S,

* El Asmar R,

* Di Pierro M,

* Grazia Clemente M,

* Tripathi A,

* Sapone A,

* Thakar M,

* Iacono G,

* Carroccio A,

* D'Agate C,

* Not T,

* Zampini L,

* Catassi C,

* Fasano A.

(also looking specifically at gut cells)

Gastroenterology. 2005 Apr;128(4 Suppl 1):S135-41.

Follow-up of patients with celiac disease: achieving compliance with treatment.

* Pietzak MM.

(what the name says)

Histopathology. 2005 Jan;46(1):64-72.

Elevated expression of hyaluronan and its CD44 receptor in the duodenal mucosa of coeliac patients.

* Kemppainen T,

* Tammi R,

* Tammi M,

* Agren U,

* Julkunen R,

* Bohm J,

* Uusitupa M,

* Kosma VM.

(more cellular stuff - this is from the abstract: CONCLUSIONS: The HA-positive coat on surface epithelium seen even in patients in remission suggests persistent or even permanent changes in the epithelial permeability barrier in coeliac disease.)

Eur J Gastroenterol Hepatol. 2006 May;18(5):483-91.s

The toxicity of high molecular weight glutenin subunits of wheat to patients with coeliac disease.

* Dewar DH,

* Amato M,

* Ellis HJ,

* Pollock EL,

* Gonzalez-Cinca N,

* Wieser H,

* Ciclitira PJ.

(More cellular. Taken from the article: Patients 1 and 2 were both women, aged 77 and 70 years, who had been on gluten-free diet for 40 and 14 years, respectively. Patient 3 was a 73-year-old man who had been on a gluten-free diet for 11 years. We limited the present in-vivo study to three patients, as the experiments are invasive and time-consuming and in view of the fact that all three patients reacted with significant damage to the small intestinal architecture. The expression of IL-15 is massively up-regulated in the small intestine of individuals with active, but not treated coeliac disease.... Our coeliac patients displayed a few IL-15 positive lamina propria cells at 0 h, but by 2 h there were numerous stained cells.)

Do you need more?

[super-sally888]

Hi, the interesting thing is that he was diagnosed with bloodwork and was positive for gluten intolerance and some other food intolerances (caesin, and something else). After the treatment he no longer tested positive for anything. This sister is very sensible and in touch with her son, including nuances of behaviour... and is watching him very closely.... they also have a very healthy largely organic diet....

However, I do agree that this is not normal! Else none of us would have this becuase we would have been 'cured'....

But my other sister is another story... she tested positive - bloodwork and still thinks she can folllow the diet just now and then when it suits her.... (I will see her in person next year... no point in preaching to her on line, though I may recommend her to take a look at this website - it will just alienate her and I won't be able to give her help when / ifever she comes to her senses...)...

Sally

sally, a really easy way to set the record straight, would be for your sister to do follow up blood work on her child----that is, if he was diagnosed by bloodwork.

[darlindeb25]

There will always be that person out there who claims he/she can cure us. There is no cure, just a gluten free lifestyle. People who think they are cured are just hiding from reality, they want so bad to believe that everything is ok.

I am very spiritual, I am a moderator on a spiritual angel forum and many, many times I have been told that I wish this disease upon myself and that if only I believed, then it would be gone. People will believe what they want to believe. I know I did not wish celiacs on myself, I do however feel that sometimes in life things happen to us for a specific reason. Celiacs for me, has made me a much more understanding person. I no longer look at someone and think they are crazy if they say they have a pain and I can't see anything. I know many of us look perfectly normal and when people hear we have a disease, they raise their eyebrows and think omg another hypocondriac.

Just stay strong, know you are doing the best you can for yourself and understand there is no cure, only the gluten free lifestyle will help us. There may be a drug soon that scientist say will allow us to eat gluten, yet will it only mask the symptoms and will gluten continue to cause damage to our systems. I, personally, will not trust medications without years of clinical study behind it and by the time I feel that drug is safe, I will probably be too old to care.

[chrissy]

sally---what type of blood tests were done? were they legitimate tests by a regular MD, or were they a questionable type of test done by someone like a naturopath? specifically, i guess, was he tested for TTg antibodies and/or endomysial antibodies? it could be possible that if his testing was not a "medically recognized" test, then perhaps he really did not have celiac disease, and so whatever treatment the chiro used would appear to help because they weren't dealing with celiac in the first place. there are other conditions that can cause raised levels of AGA antibodies, and other conditions that can be the cause of a temporary, non-celiac, gluten intolerance. if these problems were treated---it could appear that the gluten problem was gone.

[phakephur]

I'd just like to know where that information came from, particularly since it used to be thought that the opposite was the case

Those abstracts are interesting, but they are from recent studies. Was it only as recently as 2005 that doctors began advising us that celiac cannot be "outgrown" as some food allergies can?

In any event it doesn't matter because it's just a trivia question.

[VegasCeliacBuckeye]

My sister went to some quack chiropractor and talked to him about me and my family having celiac disease. This guy claimed he could cure allergies, including celiac. From all that I have read, it can't be cured and it isn't even an allergy! I pointed that out to her, but I don't think she believed me.

So is finding ppl like this common?? I am just wondering how often I will have to hear this stuff for the rest of my life!?!

ptkds

He's a quack and should lose his medical license (if he has one - haha).

Tell him that you met a guy that can cure back problems with hypnosis and see what he says...

Moron (him, not you)

[Jestgar]

Those abstracts are interesting, but they are from recent studies. Was it only as recently as 2005 that doctors began advising us that celiac cannot be "outgrown" as some food allergies can?

In any event it doesn't matter because it's just a trivia question.

I only looked for the most recent, since knowledge changes and older ideas can be proved to be so incomplete as to be effectively wrong.

If you consider that adults often present with non-gastro symptoms, and that physicians were taught that Celiac is only a childhood disease, most doctors didn't associate the two age extremes with one disease. So yes, they did believe that Celiac could be outgrown. And years from now it may be found that other childhood food allergies are NOT outgrown, they just present with different symptoms in adults.

[chrissy]

jestgar----i've already heard someone say that their doctor told them exactly what you said---that the allergies just present with different symptoms rather than get outgrown.

[Darlene]

I have been told that men with Celiac genes do not have the ability to switch it on/off. Women on the other hand can. The trigger for this can be puberty/pregnancy, stress/hormones. This seems to be the case with alot of autoimmune disorders for women.

I'm not sure if this is true but it does seem to make "logical" sense.

As far as a "cure" - perhaps we are all on that "journey of understanding".

take care