Should I Eat Gluten Free Now..?

[Nineflowers]

Hi. I started feeling really unwell several months back. Permanently exhausted; brain fog; really bad acid reflux and sometimes heartburn/indigestion so bad it kept me awake at nights (after never having a problem like this in my life, and I'm in my mid 50s).  To the point it stopped me working.  Initially, I went to a rather unsympathetic new GP in my practice, who charmlessly decided that given my age (she made me feel 100) I must have stomach cancer.  As my grandma died of this, I was worried to say the least, but as an emetophobe, very scared of having the endoscopy.  She prescribed me Lansoprazole but nothing when they ran out. If my symptoms returned, she said I should go abck and she'd book me for an endoscopy.

The Lansoprazole ran out and predictably, my symptoms returned in about two days. In the meantime, I had gone back to her with an unrelated, lifelong condition (PCOS) and instead of saying I was a perimenopausal woman with severe PCOS, she decided I definiitely must have endometrial cancer!  So two cancers in a fortnight!

 

Needless to say I insisted on having my original, and lovely, GP back.  She is older and less likely to assume anyone over 50 has cancer every time they stub their big toe!  She did a smear test for the PCOS and sure enough - no cancer or pre-cancerous cells. Just PCOS. She also resumed the Lansoprazole whilst I waited for an endoscopy.

 

I had the endoscopy this week.   They said nothing sinister they could see, but I do have gastritis.

They took 4 biopsies including one for coeliac.  I have had no blood tests, or any other tests.  Although I'm going to the (nice) GP this afternoon and may well ask her if she will do a blood test looking for coelic disease as we are waiting 4 weeks for the biopsy results and I'd like as much info as possible.  Upto today I have continued eating gluten.  I should say I was diagnosed with vitiligo several years back so I do have a history of auto-immune disease.

 

I am really concerned that although the Lansoprazole works brilliantly on my reflux and indigestion - I am still feeling exhausted all the time.  So I want to see if there are any other tests my GP can do to find me some answers whilst I wait.

 

I am thinking, and have thought all along - I have something related to gluten intolerance or coelic disease. 

And don't want to spend the next 4 weeks waiting for results, making myself more ill as I feel the Lanzoprazole - whilst essential right now - is only a sticking plaster.  I want to find out what is causing it.

 

Does any of this sound familiar to anyone who went on to get a full diagnosis of coelic disease?   Just having gastritis that is visible during endoscopy..?  Also, should I stop eating the gluten from today onwards, after I get a blood test (If I do)?    I am really, really keen to try and tackle the root cause of this so I won't have to have PPIs for the rest of my life.  I am also keen t get fit again (am overweight). I am curently too tired to exercise and hoping that by dropping out the gluten I might lose the brain fog and exhaustion...

 

Any info, support or light anyone could shed would be a MASSIVE help to me right now. Feeling relieved I don't have cancer (and angry that first GP decided everything I ever presented with was cancer and couldnt possibly be anything else, to the point she didn;t do a blood test or mention any other possibilities and had me scared out of my wits for the past 3 months).

 

Still a bit shellshocked from the endoscopy and also all the stress of the past few months. 

[cyclinglady]

Hi! 

Wow!  Sounds like your doctors are not following the British GI recommendations for diagnosing celiac disease.  

Normally, if celiac disease is suspected, they run a simple screening blood test to check for antibodies.  If positive, you are referred to a GI for an endoscopy to obtain biopsies (looking for villi damage and not gastritis).    Both the blood test and an endoscopy are required because other things like tropical spruce or parasites (many things) can cause small intestinal villi damage. 

In your case, they were looking for stomach cancer.  Nice that they took biopsies, but even if they determine villi damage, they need to find the cause.  That is where the blood test can help.  It can be a bit tricky as some people are seronegative on the blood tests.  Trialing the gluten-free diet can aid in the  diagnosis too.  

But I would not start the diet until after the blood test (if gluten free, celiac testing will not work) and you have the biopsy report in your hand!  Why?  Things get lost, destroyed....whatever.  That is why you should remain on a gluten diet until all testing is complete!

Read more here as this site is consumer-friendly and browse through their other pages:

Open Original Shared Link

And here is the British GI requirements for celiac testing, etc.:

Open Original Shared Link

Open Original Shared Link

[Jmg]

Hello again  I've answered you in the UK thread also but this one may be a better bet as its in the pre diagnosis forum.

Firstly, welcome! This is a good place and you will get as much advice and support here as you need. We all remember how this:

8 hours ago, Nineflowers said:

Still a bit shellshocked from the endoscopy and also all the stress of the past few months. 

feels.

Second, this can be very confusing, I tried to put together some useful Q&A here but you could follow some of the links at the bottom of the post for more context.

Ah CyclingLady has replied! That makes it easier.  As ever she is spot on!

 

 

 

[cyclinglady]

6 minutes ago, Jmg said:

Hello again  I've answered you in the UK thread also but this one may be a better bet as its in the pre diagnosis forum.

Firstly, welcome! This is a good place and you will get as much advice and support here as you need. We all remember how this:

feels.

Second, this can be very confusing, I tried to put together some useful Q&A here but you could follow some of the links at the bottom of the post for more context.

Ah CyclingLady has replied! That makes it easier.  As ever she is spot on!

 

 

 

?

[Suzy G.]

Gluten sensitive. Bottom line is that eating gluten kills some people slowly. Doctors do not have all the answers so do not rely on them. One of the hardest things you can do is follow a gluten free diet, but you can do it. Do it. Do it. Do it.  One of the best books about gluten is "Dangerous Grains", it is easy reading and a must have for people who are not sure if they should avoid gluten. You can get book at Barnes and Noble ONLINE cheap, get the used book for about five bucks. This book is like a bible. You can do this. Also, some of that  anti gerd medicine causes your teeth to fall out, it did it to mine and have Doc test your Vit D level. You need to know what your Vit D level is, that med causes your Vit D to drop. Peace. Get that book, heehee

[Nineflowers]

Thanks all. It's appreciated.

 

Yes, I think the usual protocol was maybe disrupted by the fact I initially had the aggressive GP who just wanted me to go for an endoscopy, and flatly refused to do bloods or anything else.  She seemed in a huge rush both time I saw her.  She couldn't clearly communicate - I had to ask her to slow down and repeat what she had said, and clarify. She simply had no intention of doing bloods.  Never again.

 

Then back to my original GP (same practice - and I have hardly been to the doctors in my entire adult life, but the few times I have been, it's usually been her), who maybe didn't want to step on her colleague's toes and probably thought by just sorting out an endoscopy, she'd get the answers.

 

I am wondering if she was also thinking that if it's coeliac, then it will show in the biopsies so no need to bother with the bloods..?

ETA: Also to add: I have gone gluten free since yesterday and can already feel a bit better (and I'm aware it takes months or years to recover, but no itchy mouth since yesterday and the brain fog, I swear, is lifting...)

Will any harm be done if I can get the practice dietician/nurse to blood test me down the week, but stay off or drastically reduce gluten in the next few days?  I'm guessing the damage will take ages to reverse so would probably show in my blood if I went this week, after just a few days with no gluten..?  Or should I just go back to the gluten, full-on, even though it's only a few days?

Sorry for all the stupid questions.  It was late and Friday when I saw my (no doubt exhausted) GP, so she may have got it wrong.

[Jmg]

On 6/16/2017 at 2:36 PM, Nineflowers said:

Just having gastritis that is visible during endoscopy..?

I had visible gastritis but negative on the biopsy for villous atrophy, so it's not conclusive either way.

Quote

Will any harm be done if I can get the practice dietician/nurse to blood test me down the week, but stay off or drastically reduce gluten in the next few days?  I'm guessing the damage will take ages to reverse so would probably show in my blood if I went this week, after just a few days with no gluten..?  Or should I just go back to the gluten, full-on, even though it's only a few days?

I can't say whether it will have any effect. As above, people vary wildly on how long antibodies take to disappear. From the outside my advice would be to stay on gluten until testing is complete but I understand how when you've been suffering and can see a chink of light your instince is to go for it asap. You need to decide for yourself, but if you go gluten free and testing is negative you may have to live with uncertainty concerning your ultimate diagnosis. 

Quote

Sorry for all the stupid questions.  It was late and Friday when I saw my (no doubt exhausted) GP, so she may have got it wrong.

  Your questions are all perfectly valid and understandable. As above, this can be a very confusing and distressing process. Lot's of us have been through it and understand it very well. You don't need to apologise and feel free to ask all the questions you need to.

 

[Nineflowers]

Thanks for that reassuring and useful reply.

Am seeing the dietician person at my GP's practice tomorrow so have resumed the gluten for now and will see if she can sort out or do a blood test, tomorrow. 

Further reading tells me one type of gastritis is 'auto-immune', and whether gluten is the culprit or not, I suspect that's what I have.  Looked at the print out they gave me at hospital and apparently it's 'pan gastritis' (ie: red/swollen all over the inside of my stomach). Hopefully amongst those biopsies they took, there'll be an answer.

For anyone about to have an endoscope in the UK, anyway - remember to mention you'd like them to look for coeliac.  I mentioned it only a minute before the procedure started and the doctor therefore specifically looked for it and it mentions the patient raising a concern about coeliac - I got the strong impression they might not even have looked for it, otherwise..?

I have decided whether they find coeliac or gluten intolerance, or not, due to my other issues - another auto-immune disease (vitiligo) and PCOS (insulin resistance) it makes sense to eliminate gluten once I have had the tests and got some answers from those tests!

 

[Jmg]

1 hour ago, Nineflowers said:

I have decided whether they find coeliac or gluten intolerance, or not, due to my other issues - another auto-immune disease (vitiligo) and PCOS (insulin resistance) it makes sense to eliminate gluten once I have had the tests and got some answers from those tests!

That was my conclusion prior to my gluten challenge. Although I absolutely think your right to pursue a diagnosis ultimately your health and well being is the goal. So do trust your own knowledge of your body and how it reacts. You are the worlds leading expert on your own body

 

[EenieNeNe]

When I first started to read your post I had to look twice because I could have sworn it was me that had posted it.

I am 59 and also have PCOS and Hashimotos and also just started having severe symptoms in the last year (severe gerd, fatigue, headaches, inflammation, brain fog, vertigo, constipation) after an extremely stressfull period at work. Although I do feel I was having some symptoms before that and just didnt make the connection.

My testing was a bit opposite of what you have experienced, I started with bloodwork and had very high numbers on one antibody only then had the endoscopy and colonoscopy done and did not find anything conclusive.

My doctor wanted to do a capsule endoscopy next but I had to switch doctors due to insurance issues and the new doctor said there was no need to do one and that I should just go on the gluten free diet, I am on day 5 now.

I would demand that they do the bloodwork immediately that will give you some answers on celiac but even if you dont show antibodies you could still have gluten intolerence that can be causing you issues so ultimately you will still want to try going gluten free as soon as the blood work is done to see if it helps.

Keep us posted, would love to hear your progress.

Janine

[Nineflowers]

Thanks, both. 

 

Janine, it does sound like we are on precisely the same journey and almost starting out at the same time.  Nice to not feel so alone with this.  It's a bit more daunting than I'd expected it to be.

Not sure if the GP's dietician can do bloods tomorrow, or whether I'll have to book back in, in a few days or next week, for the blood test. Hoping she can do it tomorrow, though.

 

I've been exhausted for the past 3 months - the brain fog and tiredness and anxiety are my strongest symptoms but feel like I can get on my bike for the first time this year, tomorrow, to get to the dr's!   I am going to stay on the gluten til results come in - not sure how long that might be - but hopefully not long.

 

[EenieNeNe]

I know its frustrating to wait but it will be worth it to get some answers. Happy to offer support when/where I can.

Janine

[Nineflowers]

Dietician nurse says the same as the doctor: come off the gluten for a month, see if you feel better and if you do,then continue gluten free or go back on if you want the diagnosis. Although as far as they're concerned, I'm gluten intolerant if I notice a difference and say I am.  I said it will be harder to return to gluten, after I have stopped but they seem insistent that's the way.

That said, it makes sense just to drop it now as it also affects my PCOS. And I will need to wait around 3 weeks to hear back about the coeliac biopsy, anyway.

 

[ravenwoodglass]

1 hour ago, Nineflowers said:

Dietician nurse says the same as the doctor: come off the gluten for a month, see if you feel better and if you do,then continue gluten free or go back on if you want the diagnosis. Although as far as they're concerned, I'm gluten intolerant if I notice a difference and say I am.  I said it will be harder to return to gluten, after I have stopped but they seem insistent that's the way.

That said, it makes sense just to drop it now as it also affects my PCOS. And I will need to wait around 3 weeks to hear back about the coeliac biopsy, anyway.

 

You may see some improvement in that time but the real test will be adding gluten back in if you do.  I hope you do get some relief quickly and that your biopsy shows clear results. Do keep in mind that damage can be patchy and get missed so if the diet helps don't give up on it if the biopsy says no damage.

[EenieNeNe]

My new doc said she will recheck my bloodwork after 3 months gluten free to see if my antibody count goes down.

Janine

[Nineflowers]

On 21/06/2017 at 5:01 PM, ravenwoodglass said:

You may see some improvement in that time but the real test will be adding gluten back in if you do.  I hope you do get some relief quickly and that your biopsy shows clear results. Do keep in mind that damage can be patchy and get missed so if the diet helps don't give up on it if the biopsy says no damage.

Thanks, ravenwoodglass. I know they 'only' took 4 biopsies so there is a chance they missed it, even if I have it - am also guessing because it's pan gastritis - no one bit of my stomach lining looks too different to any other, so it was probably random, where the dr chose the sites to biopsy.  I won't give up on it if I feel at all better and might continue with it, or at least reduce gluten - if I feel no difference because I do know avoiding or minimising gluten is 'good' for the PCOS I was diagnosed with years ago.

 

I know you are right, about adding gluten back in being the real test.  I wish they'd just taken the bloods whilst I was still 'glutened' (is that the word?) but they really wouldn't budge on it.  That said, the more I read about gluten intolerance and women with PCOS, the more I start to feel that I am onto something, with this - whether I'm offiially  GI' or not!