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Is What The Doc Said True?

bunnybaby

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bunnybaby Newbie
bunnybaby
Posted

I am in the UK and my GP is convinced I am celiac. I have been gluten free for about 8 months and know my body cannot take wheat.

I have just come back from the doctor at the hospital where I had been referred for a biopsy as my bloods where negative. (in the UK).

The doc said my rash was nothing like DH despite lookinhg like it to me and my GP and that it could not be as mine are painful and irritating and DH is never painful only itchy. Is this true as I had read it was painful?

He also said that as my symptoms were massivly improved by my diet change then it could not be celiac as in his experieince celiacs rarely if ever have symptoms ( is this true to?) and see no change when they give gluten up?????.

He seemed to think that I just wanted to be celiac and said that if I went back on gluten for 6 months he would do the biopsy but he was hap;py to say that I am not celiac. I said no way as it would kill me to do that. And that was it - dismissed!

I am not sure what to make of it. I do not want to be celiac but I don't like being seen as a nutter either really. He was nice enough but very patronising. I will just continue to manage it myself but I was /am convinced I am celiac due to my symptoms, improvement on giving gluten up and the effect of even the slightest bit in my system now.

I just wanted to know if all he said to me is correct?

Thanks so much.

Ruth

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KathiSharpe Apprentice
KathiSharpe
Posted

Time to fire your doctor.

bunnybaby Newbie
bunnybaby
Posted
  • Author
Time to fire your doctor.

Thank you! I think youmay be right :lol:

JillianLindsay Enthusiast
JillianLindsay
Posted

What?! Your DR is grossly misinformed. My DR said that Celiac doesn't cause vitamin B12 and Iron deficiency (which is one of the main indicators). DR's are smart, but they can't (and don't) know everything, that's for sure!

I don't have DH so I can't comment on that, however the primary reason for people to go gluten-free is because they see a reduction (or even elimination) of their symptoms! Time to ask for a referral to a GI doc or if possible a DR that specializes in celiac disease.

If you want (or need) medical confirmation that you have celiac disease then go back on gluten for the biopsy. If you feel better on the diet and don't care about (or don't feel you need) confirmation, then just keep on doing what is making you feel better :)

Good luck & I hope you find better informed DRs in the future!

Jillian

I am in the UK and my GP is convinced I am celiac. I have been gluten free for about 8 months and know my body cannot take wheat.

I have just come back from the doctor at the hospital where I had been referred for a biopsy as my bloods where negative. (in the UK).

The doc said my rash was nothing like DH despite lookinhg like it to me and my GP and that it could not be as mine are painful and irritating and DH is never painful only itchy. Is this true as I had read it was painful?

He also said that as my symptoms were massivly improved by my diet change then it could not be celiac as in his experieince celiacs rarely if ever have symptoms ( is this true to?) and see no change when they give gluten up?????.

He seemed to think that I just wanted to be celiac and said that if I went back on gluten for 6 months he would do the biopsy but he was hap;py to say that I am not celiac. I said no way as it would kill me to do that. And that was it - dismissed!

I am not sure what to make of it. I do not want to be celiac but I don't like being seen as a nutter either really. He was nice enough but very patronising. I will just continue to manage it myself but I was /am convinced I am celiac due to my symptoms, improvement on giving gluten up and the effect of even the slightest bit in my system now.

I just wanted to know if all he said to me is correct?

Thanks so much.

Ruth

bunnybaby Newbie
bunnybaby
Posted
  • Author

Thanks I just felt so low and cross when I came out and I just needed to hear what I know already from someone else.

Thanks

Ruth

ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor is horribly ill informed. His misconceptions about celiac disease are the worst I have ever heard. I have DH and yes it can be extremely painful as well as itchy. If you can find a new doctor please do so but if your healing well on the diet keep it up. That is the best test there is. Your body is clearly showing you the answer that doctor could not.

tiggsy Newbie
tiggsy
Posted

In my opinion the doctor at the hospital needs retraining. I personally would write to the management at the hospital and tell them that he should not be allowed to do anything connected with diagnosing celiac disease until he has been retrained. In my view he should be struck off, but i guess that's too much to hope for.

On the other hand, at least your gp seems to know his stuff. Unfortunately, sending you to another hospital for this sort of check will cost him, but if you do get sent elsewhere, remember that you must be on a normal gluten rich diet for several weeks before the test to have a chance of it being accurate.

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bunnybaby Newbie
bunnybaby
Posted
  • Author

Thank you both, i feel so much better to know that I was right about him. It makes you doubt yourself when you think they are the one you are trusting to be expert. Thanks everyone for replying it really helps.

ang1e0251 Contributor
ang1e0251
Posted

The doc said my rash was nothing like DH despite lookinhg like it to me and my GP and that it could not be as mine are painful and irritating and DH is never painful only itchy. Is this true as I had read it was painful?

My DH was so painful it repeatedly woke me out of my sleep at night.

He also said that as my symptoms were massivly improved by my diet change then it could not be celiac as in his experieince celiacs rarely if ever have symptoms ( is this true to?) and see no change when they give gluten up?????.

Look at just about any post on this website and tell me if none of us had symptoms and improvement on the gluten-free diet. Why in the world would we live such a restrictive lifestyle if not?

He seemed to think that I just wanted to be celiac and said that if I went back on gluten for 6 months he would do the biopsy but he was hap;py to say that I am not celiac. I said no way as it would kill me to do that. And that was it - dismissed!

As if anyone would "want" to have celiac disease. I feel he should be "dismissed".

I just wanted to know if all he said to me is correct?

Sounds to me like none of what he said to you was correct. Maybe God will look down and bless him with celiac disease just to school 'im!!

lovegrov Collaborator
lovegrov
Posted

My DH was not painful. Still, your doctor is an idiot.

richard

nora-n Rookie
nora-n
Posted

I am in Europe too, and your doctor is wrong wrong.

There are some new articles about celiac now saying many never reported any symptoms, that is because of family screening after the first celiac is diagnosed in a family.

But their symptoms (which they did not report before) got better off gluten. all kins of ills and illnesses, joint pain, depression, lots of things they did not connect to celiac before.

Thos articles are called the new face of celiac or new presentations og something like that. And that only 5% are underweight and 39% are overweight now.

On the local forum most have had symptoms and they do improve on a diet, but there are occasionally some who still have problems but they are few. And most have to do with wheat starch, that they do not improve until they also omit wheat starch.

If you can get a biopsy of the rash (healthy skin that has not had an outbreak, but during an outbreak) and it is positive for DH, this means you have celiac too. It can be positive for a year after going gluten-free.

Mine was negative but I had been gluten-free for a year and it was done without an outbreak.

(mine is burning a little bit right now as I ate a little bread with wheat starch while travelling)

bunnybaby Newbie
bunnybaby
Posted
  • Author
I am in Europe too, and your doctor is wrong wrong.

There are some new articles about celiac now saying many never reported any symptoms, that is because of family screening after the first celiac is diagnosed in a family.

But their symptoms (which they did not report before) got better off gluten. all kins of ills and illnesses, joint pain, depression, lots of things they did not connect to celiac before.

Thos articles are called the new face of celiac or new presentations og something like that. And that only 5% are underweight and 39% are overweight now.

On the local forum most have had symptoms and they do improve on a diet, but there are occasionally some who still have problems but they are few. And most have to do with wheat starch, that they do not improve until they also omit wheat starch.

If you can get a biopsy of the rash (healthy skin that has not had an outbreak, but during an outbreak) and it is positive for DH, this means you have celiac too. It can be positive for a year after going gluten-free.

Mine was negative but I had been gluten-free for a year and it was done without an outbreak.

(mine is burning a little bit right now as I ate a little bread with wheat starch while travelling)

Thank you, I will pursue it through the DH. I know it is caused by wheat, as it the link to outbreaks is so strong now.

I have been Gluten free for 7 months or 8 I think so that should be fine. I am just recovering from an outbreak now thanks to slipping up somewhere 2 weeks ago.

nora-n Rookie
nora-n
Posted

Maybe get a biopsy done during an outbreak. Must be done right (on skin that is healthy) (I read a posting somewhere that the doctor took several samples and the person did get a diagnosis)

I think some pwople need several biopsies before one turns out positive. Don't give up.

I still have to get a big rash and a biopsy ( my rash lasts only a short time)

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