Confused After Seeing Specialist

[Jenny1972]

Hello

I was told 2 months ago that I have Celiacs and started a gluten free diet. I saw specialist at hospital yesturday and he said there is nothing in my blood work to indicate I have celiacs. Now I am very confused. They are sending me for a bowl bi-opsy to confirm celiacs but why would doctor say I have it and to start a gluten free diet if they are not sure. Obvoulsy I have had loads of sysmtoms like tiredness and abdominal pain etc but surly the blood test would show I had celiacs. Can any one help with this. Feel really confused and alone. I am a single parent, my son has epilepsy and I have no family near by.

Jenny

[debmidge]

Hi and welcome.....who at first told you that you have celiac? And, did you get the blood test after you went gluten free? Did they give you a copy of the blood test results so you can see the results for youself?

[Jenny1972]

Hi and welcome.....who at first told you that you have celiac? And, did you get the blood test after you went gluten free? Did they give you a copy of the blood test results so you can see the results for youself?

Hello

I was told by my GP(local doctor) that I had celiacs on the 5th Jan 2007. My blood test showed an inflamation of the bowl. Another test pre-gluten free diet showed IAG levels high....whatever that means.

Really confused. I do feel the gluten free diet has helped but now It seems to be back a square one.

Jenny

[chrissy]

jenny---do you know what they were measuring the IgA levels of? if it was antigliadin IgA levels that your doc based it on---then that is not necessarily indicative of celiac. the best tests for celiac are the Ttg IgA and the EMA IgA.

[Ursa Major]

Jenny, please ask for a copy of the blood work results and post them here, so we can see what they were.

If you have been gluten-free for over a month now, the biopsy will likely be negative, even if you have celiac disease.

Did you eliminate dairy as well when starting the gluten-free diet? If you have celiac disease, you wouldn't be able to digest dairy for at least a while. Dairy can cause a lot of the same symptoms as gluten.

Seeing that your son has epilepsy, do you realize that it can be caused by celiac disease? If you truly have it, and it is genetic, it is possible that he has it, too.

[kbtoyssni]

If you are gluten-free right now, any testing you do will most likely come out negative. I'd go by dietary response at this point because if you feel better, it's silly to go back on gluten just to get a doctor's diagnosis.

[Jenny1972]

Hello

I have been told that I have to eat gluten for the 2 weeks before I have the bowl bi-opsy otherwise they won't be able to detact celiacs. Really worried about eating gluten as I don't want to poison my body again. My doctor is still saying it is celiacs even though apparently the blood test for celiacs was negative. Although the tests did show a bowl irritation of some kind. The doctor has not mentioned at all about cutting out dairy. I am based in the UK so maybe things are dealt with differently here. It seems to me that the doctors are a bit clueless. Is it possible that I am in the early stages of celiacs which is why the blood tests are confusing. I know you are born with celiacs but it gets activated by things like stress.

If they confirm I have celiacs I will definatly get my son tested as it will be very likely that he will have it as well.

I will try and get blood tests from doctor so that I can get a second opinion. I am still sure my doctor wouldn't put me on a gluten free diet without good reason. After all it is very difficult to eat gluten free especially when my son still eats gluten.

I will be glad when they have done the biopsy then I may get some firm answers. Things are a bit unclear at the moment

Jenny

[Ursa Major]

Eating gluten for only two weeks prior to the biopsy will more likely than not result in a false negative. It takes at least four months of eating lots of gluten for your intestine to be damaged enough again for a positive biopsy. You have to realize that if you have celiac disease, and your bowel has healed on the gluten-free diet, that you will purposely destroy your villi again and possibly cause irreversible damage to yourself by eating gluten again.

Nobody can put you on any kind of diet but yourself. Doctors cannot order you to either eat gluten, or not eat gluten. You can change your diet to be gluten-free if you want to, no doctor's orders required. And the same goes for your son.

Lots of people with celiac disease put their whole family on the gluten-free diet to avoid getting glutened by crumbs and cross contamination of all sorts.

Nothing is very different in the UK, doctors there are just as ignorant as over here .

The tips of the villi produce the enzyme lactase, which allows you to digest dairy. If your villi are blunted (or completely flattened) by celiac disease, then you cannot digest dairy. That is why, until your villi are completely healed, you would have a problem with dairy. And many people with celiac disease are also intolerant to casein, meaning they will NEVER be able to have dairy again.

So, initially you need to eliminate dairy, and then try it again in a few months to see if it is okay or not.

I suggest you either have your son tested immediately, before eliminating gluten from his diet, or try him on the diet (and not test him at all), to see if it will help him. Wouldn't you be so relieved if a gluten-free diet would cure his epilepsy? Such a simple cure it would be! And yes, simple, changing your diet instead of taking drugs with side effects.

[Jenny1972]

Eating gluten for only two weeks prior to the biopsy will more likely than not result in a false negative. It takes at least four months of eating lots of gluten for your intestine to be damaged enough again for a positive biopsy. You have to realize that if you have celiac disease, and your bowel has healed on the gluten-free diet, that you will purposely destroy your villi again and possibly cause irreversible damage to yourself by eating gluten again.

Nobody can put you on any kind of diet but yourself. Doctors cannot order you to either eat gluten, or not eat gluten. You can change your diet to be gluten-free if you want to, no doctor's orders required. And the same goes for your son.

Lots of people with celiac disease put their whole family on the gluten-free diet to avoid getting glutened by crumbs and cross contamination of all sorts.

Nothing is very different in the UK, doctors there are just as ignorant as over here .

The tips of the villi produce the enzyme lactase, which allows you to digest dairy. If your villi are blunted (or completely flattened) by celiac disease, then you cannot digest dairy. That is why, until your villi are completely healed, you would have a problem with dairy. And many people with celiac disease are also intolerant to casein, meaning they will NEVER be able to have dairy again.

So, initially you need to eliminate dairy, and then try it again in a few months to see if it is okay or not.

I suggest you either have your son tested immediately, before eliminating gluten from his diet, or try him on the diet (and not test him at all), to see if it will help him. Wouldn't you be so relieved if a gluten-free diet would cure his epilepsy? Such a simple cure it would be! And yes, simple, changing your diet instead of taking drugs with side effects.

Wow....You have some really intersting ideas there. Since being on the gluten free diet it has really made me think about alternative remidies. If my son has Celiacs like me then it would be really fantastic if that would help his epilepsy. My son has nocturnal epilepsy and I thought that his bad dreams where triggering his fits so I put a dream catcher above his bed and for 3 months he was fit free. A bit of a placebo effect. Unfortunatly he got a bad virus in the winter which started the fits again. but for a while it really worked. Diet is a hugh issue at the moment and I really believe that you can make yourself better by eating the right things. There are so many food additives these days that I am not surprised people are getting ill. I took on board what people have said about not eating gluten just to get the bi-opsy to show celiacs. That seems mad. If the gluten free diet is making me feel better then maybe I should just accept that as a diagnosis. I was soo ill last year, feeling tired and weak. I feel so much better now that I am not sure the doctors really know ehat they are talking about.

Sorry going on a bit but its been really hard. I have tried to put my faith in the doctors but I am not sure they alwys have the answers.

I am just wondering if anyone else here on this site has self diagnosed?

[ravenwoodglass]

I was not self diagnosed but I am a celiac who had a great deal of damage done by doctors who went off blood work. I am a one of the 20% of celiacs that does not show up on blood work. It took 15 years before any doctor reccommended an elimination diet. I was diagnosed by an allergist after I had given up all hope and was close to death.

Rely on your body. I would skip the confirmation by the GI if it requires you to poison yourself for weeks or months to get a firm 'yea you can't eat gluten' from a doctor. If you have seen improvement on the diet stay on it. Oh and on the issue of seizures, I can not speak for anyone other than myself but I have not had a seizure unless glutened since I went gluten-free 5 years ago.

[Jenny1972]

I was not self diagnosed but I am a celiac who had a great deal of damage done by doctors who went off blood work. I am a one of the 20% of celiacs that does not show up on blood work. It took 15 years before any doctor reccommended an elimination diet. I was diagnosed by an allergist after I had given up all hope and was close to death.

Rely on your body. I would skip the confirmation by the GI if it requires you to poison yourself for weeks or months to get a firm 'yea you can't eat gluten' from a doctor. If you have seen improvement on the diet stay on it. Oh and on the issue of seizures, I can not speak for anyone other than myself but I have not had a seizure unless glutened since I went gluten-free 5 years ago.

Ravenwoodglass

Thank you so much for your help and advise. I am so sorry to hear that you had a rough time which made you feel close to death. I do sympathise as I feel so down sometimes when I know in myself there has been something wrong and yet for nearly a year the doctors kept saying I was just run down. I kind of accepted it for a while as my son has been really sick which is hard on your own without any family. Plus I have continued to work part time as an accountant. But I knew there was something wrong. Felt very angry when they turned round and said you have celiacs. I felt Like say "I Told you so!!!!!". this site has really help so thank you.

I will get my son tested. That will be a challenge as he hates needles but if it stops him having fits by changing his diet I will try it.

[Guhlia]

In the period where you put the dreamcatcher above your sons bed, was he eating less gluten due to your new diet? That could have easily caused a break in his symptoms. Celiac Disease can cause seizures. I would definitely have him tested ASAP.

[Ursa Major]

Jenny, I am self-diagnosed, doctors have failed me. I figured it out at the age of 52, and have never been well since I was three years old!

But my doctors (both my MD and my naturopathic doctor) agree that I am at least gluten intolerant, and possibly celiac disease, based on the dietary response (and getting really sick when doing a gluten challenge). There is absolutely no way I'd eat gluten again for months, just for a test. It might kill me.

[MinxyMandy]

Hello

I have been told that I have to eat gluten for the 2 weeks before I have the bowl bi-opsy otherwise they won't be able to detact celiacs. Really worried about eating gluten as I don't want to poison my body again. My doctor is still saying it is celiacs even though apparently the blood test for celiacs was negative. Although the tests did show a bowl irritation of some kind. The doctor has not mentioned at all about cutting out dairy. I am based in the UK so maybe things are dealt with differently here. It seems to me that the doctors are a bit clueless. Is it possible that I am in the early stages of celiacs which is why the blood tests are confusing. I know you are born with celiacs but it gets activated by things like stress.

If they confirm I have celiacs I will definatly get my son tested as it will be very likely that he will have it as well.

I will try and get blood tests from doctor so that I can get a second opinion. I am still sure my doctor wouldn't put me on a gluten free diet without good reason. After all it is very difficult to eat gluten free especially when my son still eats gluten.

I will be glad when they have done the biopsy then I may get some firm answers. Things are a bit unclear at the moment

Jenny

Hi Jenny

I am in the UK to and have been having an awful time. I wasnt tested 14 months ago when I was so ill massive distention, constipation, aniexty, depressed, seizure, thick rashes etc...so I started seeing a homeopath for canida which was the same type of diet as gluten-free but she said I could have rye and they made my tum swell so I stopped and kept to the diet for about 7 months!!!

When she said you should be better now I tried eating and got ill again - spoke to doctor about celiac and he had never tested me for it so I know what you mean!!!

So, like you I have been gluten-free for a while except for a few binges when I was down coz she said I d be better..so I am at the end of week one eating gluten again and I am scared that I am doing more damage but like you I need to know if thats what it is!!

Ive got to do it for 4 - 6 weeks to do the damage??? I feel awful got the worse head ache I look like my tums going to explode and I have all sorts going on..I am so down dont know if I can keep this up much longer...

So it depends on what you think I would of thought you would need to do it for longer - the celiac society told me 4 peices of bread for 6 weeks..

Hope that helped a bit

:)Mand

[MinxyMandy]

I was not self diagnosed but I am a celiac who had a great deal of damage done by doctors who went off blood work. I am a one of the 20% of celiacs that does not show up on blood work. It took 15 years before any doctor reccommended an elimination diet. I was diagnosed by an allergist after I had given up all hope and was close to death.

Rely on your body. I would skip the confirmation by the GI if it requires you to poison yourself for weeks or months to get a firm 'yea you can't eat gluten' from a doctor. If you have seen improvement on the diet stay on it. Oh and on the issue of seizures, I can not speak for anyone other than myself but I have not had a seizure unless glutened since I went gluten-free 5 years ago.

Hi there..

Hope you dont mind me asking you about this - my blood test was negative so I am now waiting to have my biopsy and having to eat it all again. I am getting worried that I havent got celiac I know it sounds crazy but I just want to know whats wrong. It has been going on so long it has become me and if it is I know I can start to get on with my life again and get better.

But like you maybe the tests arent acurate and the diet did start making me feel better so I suppose Id just have to do the diet anyway...

Take care

Mand

[Ursa Major]

Hi there..

Hope you dont mind me asking you about this - my blood test was negative so I am now waiting to have my biopsy and having to eat it all again. I am getting worried that I havent got celiac I know it sounds crazy but I just want to know whats wrong. It has been going on so long it has become me and if it is I know I can start to get on with my life again and get better.

But like you maybe the tests arent acurate and the diet did start making me feel better so I suppose Id just have to do the diet anyway...

Take care

Mand

Mandy, the celiac society has misinformed you. Six weeks is very unlikely to be long enough to destroy your villi again so you'll end up with a positive biopsy. Six months would possibly be enough.

[Jenny1972]

Hi there..

Hope you dont mind me asking you about this - my blood test was negative so I am now waiting to have my biopsy and having to eat it all again. I am getting worried that I havent got celiac I know it sounds crazy but I just want to know whats wrong. It has been going on so long it has become me and if it is I know I can start to get on with my life again and get better.

But like you maybe the tests arent acurate and the diet did start making me feel better so I suppose Id just have to do the diet anyway...

Take care

Mand

MinxyMandy

I was thinking the same. But If I can get a proper diagnosis then I can get prescription gluten free foods. Here in the UK you pay nearly

[grommet]

I am based in the UK so maybe things are dealt with differently here. It seems to me that the doctors are a bit clueless. Is it possible that I am in the early stages of celiacs which is why the blood tests are confusing. I know you are born with celiacs but it gets activated by things like stress.

If they confirm I have celiacs I will definatly get my son tested as it will be very likely that he will have it as well.

Jenny I don't want to take away from this board as it is absolutely brilliant but there is a UK based board where people may be able to advise more on UK specific stuff. Also I know there are a couple of people on there at the mo doing a "gluten challenge" and who also have suffered seizures.

If you haven't posted on there already, then have a look - they're a friendly bunch.

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[ravenwoodglass]

Hi there..

Hope you dont mind me asking you about this - my blood test was negative so I am now waiting to have my biopsy and having to eat it all again. I am getting worried that I havent got celiac I know it sounds crazy but I just want to know whats wrong. It has been going on so long it has become me and if it is I know I can start to get on with my life again and get better.

But like you maybe the tests arent acurate and the diet did start making me feel better so I suppose Id just have to do the diet anyway...

Take care

Mand

The problem for me was that no one suggested the diet until I had had D daily then day and night for 15 years. They just did blood tests and said I should be happy they were negative! I also had neuro effects that required me to use canes, blinding migraines, arthritis through most of my body (pain now is gone joint destruction remains) and many other autoimmune problems. I was literally dying, my children were terrified and one even told me the family would understand if I committed suicide.

Response to the diet was unreal, it took only a couple weeks for the D to be gone and most other problems resolved within a year with the neuro stuff still healing after 5 years gluten-free.

That response and the fact that we went from paying 17 grand a year in copays for meds, doctor visits and tests and now average $100 a year left my family with no doubt about what gluten can do to someone who does not show up in their precious tests.

Sorry if I sound a bit bitter, my children and I lost their whole childhoods all because no doctor thought to do a dietary challenge, they went off their tests while I got sicker and sicker.

So would I accept a dietary elimaination and challenge and advise others to go by what their body is telling them? You betca, For most of us (with the exception of the 'silent' celiacs) our bodies know the answers about celiac.

[JNBunnie1]

For Jenny and Minx:

Please keep in mind, going gluten-free CANNOT hurt you. Eating it can. I am a self-diagnosed celiac disease sufferer, I was very ill for half a year and lost a great deal of weight, had all sorts of stomach issues as well. I had those headaches too. I had a biopsy done for Celiac disease that came back negative. Doctors do NOT know everything and they are NOT always right. All you need to know is whether you feel better when you don't eat gluten and whether feeling better is worth the trouble to you. If you have concerns about being able to afford the gluten-free foods, consider going without those particular foods. For example, you could have yogurt and fruit for breakfast instead of cereal or toast. Have rice instead of pasta. Just a few ideas, hope this helps!