Coeliacs Reversed?

[Saffy]

Hi everyone,

I was diagnosed coeliac 10 years ago and adhered to the gluten free diet completely. I improved but i never felt well and got fobbed off by doctors saying it takes time to heal..blah blah... for so long that i stopped seeking their opinion.

In short my health very slowly got worse and worse until eventually last year i was worse than when i got the initial diagnosis.

I was having similar reactions to the gluten reactions from dairy, chemicals, nightshade veg, soya, corn, sugar, eggs and alcohol.

I wrote a detailed food diary to help me figure out what i was okay on but still remain really tired most of the time. I had to give up my job as a therapist for autistic kids who also have similar problems as im facing now ironically. I used to help them with their diets and now its happening to me too.

I found a website which proposed a gut healing program for candida/general health problems and began to follow it with great improvement.

I spent months trying to get help from my doctor and finally saw a gastroenterologist who tested me for coeliacs again. He refused to test me for candida saying the british medical profession dont believe it exists! Oh and that adults cant get food allergies..only chldren can!!!

My coeliacs results came back clear, biopsies taken after eating gluten for 6-7 days.

Can this be right that i no longer have it? Did he advise me to eat gluten for long enough to show a reaction? I didnt get gut reactions from the gluten but i got wierd in the head like i was drunk all the time and confused and irritated. Same as i get from all the other foods above. Same as all my autistic clients got too.

He just got rid of me when i last saw him and refused to help me any further....im at a loss as to what to think now after 10 years of being coeliac, now im suddenly not ( in his opinion) but i dont know what i do have!

I can ask for a second opinion but i dont know of a good gastro to ask to see in the UK. It may be something completely different but unless i ask for the specialists my doctor wont refer me.

Does anyone have any advice at all?

Thanks for reading.

Heidi

[darlindeb25]

No, celiac does not go away. Your doctor doesn't know what he is doing if he feels you can eat gluten for 5-7 days and be tested. 5-7 days will not do enough damage for testing, even though that would make me so very, very sick.

Some of us do develop other intolerance's, and you have to be free of those foods too. Other intolerance's can have the same symptoms as celiac's, or different symptoms.

I didnt get gut reactions from the gluten but i got wierd in the head like i was drunk all the time and confused and irritated. Same as i get from all the other foods above. Same as all my autistic clients got too.

You weere reacting to the gluten. My reactions over the years have changed too. Before I went gluten free, I thought all of my symptoms were gastro, but they weren't. I also had neurological symptoms, and didn't realize the connection. Now, after 9 years, when I get glutened, it's mostly neuro symptoms. It has been proven that many autistic kids also need to be gluten free, they do so much better off gluten. Sometimes, they even find the child is not autistic.

Stay gluten free, either find a new doctor, or take him some info for reading on celiac/gluten intolerance. After being gluten free for 10 years, you blood work should not show a problem with gluten.

[glutenfreeeugene]

You still have it, but you should be on L-Glutamine powder 1 scoop 3xs a day, taking enzymes and probiotics.

Western medicine only can think inside their box, if you want other results find and alternative physician.

Go to my web site and click on scd resources and get on that.

[Jestgar]

You still have it, but you should be on L-Glutamine powder 1 scoop 3xs a day, taking enzymes and probiotics.

Western medicine only can think inside their box, if you want other results find and alternative physician.

Go to my web site and click on scd resources and get on that.

Please note that this is just someone's opinion, and not a standard therapy.

[tiggsy]

Do NOT think you are cured. Coeliac is a lifetime thing, like diabetes. Just because the damage is healed, doesn't mean it's all hunky dorey again. Brain fog is a common symptom of accidentally getting "glutened".

Research has shown that the life expectancy of coeliac patients is directly proportionate to their adherence to a 100% gluten free diet - in other words, if you eat gluten, you lose years off your life. Want that? I don't think so.

There is a lot of ignorance about coeliac disease, even in the medical profession. Change your doctor, go to one that knows what they are talking about.

[Saffy]

Thankyou all for replying.

With your advice i just searched the uk coeliac site and they say i need to eat gluten four times a day for a minimum of six weeks! to get a clear positive diagnosis.

I feel sick and incredibly angry that he put me through all that, treated me like scum on his shoe and let me leave thinking i was cured.

Im more angry with myself as i was very unsure of this man and still let him treat me, despite his diabolical attitude as it took so long to get to see a gastroenterologist, and i have private insurance too!

At least the diet im on doesnt allow gluten so i havnt eaten any more based on his incompetence.

Now all i need to do is find someone who knows what they are doing..... how do you know though..it seems to be pot luck and thousands of pounds/ months of ill health down the toilet roulette!!!!

Will have to glean the positive thought that if a trained medical specialist is so stupid that they cant figure this out then i must be a genius!!!! Hah!

[lizard00]

Have you looked into further possibilities? I know you looked candida, and while I can't offer much by way of any sort of testing to pursue, I would urge you not to give up in looking. Part of the celiac diagnosis involves issues resolving on the gluten-free diet. It sounds like your health is still declining, so perhaps you are dealing with something in addition to celiac, or something other than celiac. There are a few other things that can cause villous atrophy that may be worth your time to check into.

There are some real doozy doctors out there! It's a shame I've encountered a few myself. Don't give up and I hope you get to the bottom of everything!!

[Saffy]

Yes ive been trying to get some help figuring out what it could be. Its been months and im getting no ideas at all from doctors. They look at me like im wasting their time, im so fed up of it but too ill to give up. The candida diet has really helped so im guessing thats a part of it.

What other conditions cause the same as coeliacs? Any help is greatly appreciated as im going around in circles at the moment.

Thanks

[Lisa]

What other conditions cause the same as celiacs? Any help is greatly appreciated as im going around in circles at the moment.

Thanks

You can look into Lyme Disease. It can mimic symptoms such as those of Celiac Disease.

[Lynayah]

Do NOT think you are cured. Coeliac is a lifetime thing, like diabetes. Just because the damage is healed, doesn't mean it's all hunky dorey again. Brain fog is a common symptom of accidentally getting "glutened".

Research has shown that the life expectancy of coeliac patients is directly proportionate to their adherence to a 100% gluten free diet - in other words, if you eat gluten, you lose years off your life. Want that? I don't think so.

There is a lot of ignorance about coeliac disease, even in the medical profession. Change your doctor, go to one that knows what they are talking about.

I am new here. Reading this: " if you eat gluten, you lose years off your life. Want that? I don't think so."

This frightens me. I am eating gluten every day while waiting to get in for a test at University of Chicago. I have been symptomatic for many years (without my realizing what was possibly going on of course).

Does this mean that I have seriously shortened my life because I did not get a diagnosis earlier?

I am in tears.

[ravenwoodglass]

I am new here. Reading this: " if you eat gluten, you lose years off your life. Want that? I don't think so."

This frightens me. I am eating gluten every day while waiting to get in for a test at University of Chicago. I have been symptomatic for many years (without my realizing what was possibly going on of course).

Does this mean that I have seriously shortened my life because I did not get a diagnosis earlier?

I am in tears.

No. After you go gluten free you will heal, but you do have to be strict with the diet. It is my understanding that after we have been gluten free for 5 years the lifethreatening effects of celiac, things like the associated cancers and such have the same chance of occuring as nonceliac population. We do have to be alert for signs of other autoimmune disorders although most who develop those develop them while still eating gluten.

In addition because of the fact that we have to consume less processed and more whole foods our diets tend to be healthier than most of the population. There are even some of us who haven't even caught a cold or virus since diagnosis, I am one of those.

If you are a celiac and you continue to eat gluten then you would lose years.

Also do be sure to start the diet the day the endo is done, you don't have to wait for your follow-up appointment. Your body may tell you the test results before you even go back. There are chances of a false negative on the test so do be sure to keep at the diet for awhile even if the test is negative.

[Karrin]

Have you looked into other immunological problems? Had a full thyroid & parathyroid workup recently? They're all worth a look into if your still experiences lots of fatigue and adhering to the diet (though of course, I'd keep an eye out for other food intolerances as everyone here has advised). I was recently diagnosed as having celiacs and I also have endometriosis (thought by some doctors to be an immune related problem), reynaulds, and my doctor and I are now looking into possible lupus, RA (positive blood test), and I'm having my parathyroid tested for hypoparathyroidism.