Gluten intolerance or celiac I don’t know

[Leslee12]

Hi everyone am new on the site so glad I have found you .... For many years I have suffered mostly in silence no one wants anyone to complain all the time ....my bloating sore muscles feeling tired sick every day poor bowel movements I was diagnosed with IBS .... Around 3 weeks ago I don’t know why but I looked up food intolerances it lead me to gluten I couldn’t believe it all off my symptoms were there ... So for 2 weeks I ate everything gluten free found a free app where you could scan food brilliant within 3 days I started to feel so much better on a scale of 1 to 10 I went from a 3 to an 8 .... the depression started to lift the bloating started to go down quite a lot of wind lol brain fog gone and so much lighter it was and is truly a life saving miracle... after 2 weeks I forgot and I ate 8 chocolates the next day I was so ill with vertigo and being sick I thought I was going to have to call an ambulance..... 3 days later still with some vertigo I discover I had been glutened poisoned ....I don’t know if I have celiac or gluten intolerant as I haven’t been to the doctor so any advice would be very much appreciated thank you 

leslee 

 

[cristiana]

Hi Leslee 

Welcome to the Forum!

It sounds as if you may well be onto something linking your symptoms to gluten.

In Britain (I'm a British member of this forum!) a staggering number of coeliacs are misdiagnosed with IBS every year, and there is a real push from the Coeliac UK charity to address this problem. 

When it comes to getting a diagnosis in the UK you will first need to make an appointment with your GP and explain your concerns. Prior to the appointment it will be worth your looking at the Getting Diagnosed section on the Coeliac UK website to see what lies ahead with the NHS.  Hopefully your GP will then offer you a full coeliac panel of blood tests.  If the results prove to be positive, under normal circumstances (not sure if this is currently being affected by Covid as there are long hospital waiting lists) you are offered an endoscopy to confirm the diagnosis and see what sort of damage gluten has done to your gut.  Sometimes even if people have really compelling symptoms but normal blood test results they will push for this endoscopy, because in a small number of coeliacs blood results come back normal even though there is damage to the gut.

Another thing to consider is that you may have Non-Coeliac Gluten Intolerance.  For people who suffer with this condition, gluten still makes them unwell but they don't have damage to the villi in their gut.

I hope some of this is of help. Do come back to us if you have any more questions or need any more advice.  I wish you all the best.

Cristiana

 

[Leslee12]

Thank you so much Christina it’s like being reborn honestly... I didn’t loose any weight or anything over the years but I will take on board what you say I live in Scotland and I am really blessed with a good doctor who I will contact them after the holiday 

happy Easter and thank you so much again

leslee 

[cristiana]

You are very welcome.  I wish I lived in Scotland - love it, Perthshire esp!  

[trents]

Leslee12, please realize that if you are eating gluten free now any testing you would have for celiac disease would be invalid. You would need to go back on eating gluten daily for 6-8 weeks.

[Leslee12]

6 hours ago, trents said:

Leslee12, please realize that if you are eating gluten free now any testing you would have for celiac disease would be invalid. You would need to go back on eating gluten daily for 6-8 weeks.

Oh I couldn’t I nearly killed myself last week I had been gluten free for 2 weeks and forgot I ate 8 Thornton’s chocolates and the next day the room was spinning I was sick everywhere thought I was going to call an ambulance seriously ill anyway that lasted 4 days tapering off looked up the net I had poisoned or glutened myself never again 

thank you so much for everything if you can recommend anything I would be very grateful

leslee 

[CMCM]

On 4/3/2021 at 4:22 PM, Leslee12 said:

Oh I couldn’t I nearly killed myself last week I had been gluten free for 2 weeks and forgot I ate 8 Thornton’s chocolates and the next day the room was spinning I was sick everywhere thought I was going to call an ambulance seriously ill anyway that lasted 4 days tapering off looked up the net I had poisoned or glutened myself never again 

thank you so much for everything if you can recommend anything I would be very grateful

leslee 

This happens to a lot of us.  We figure out that gluten might be the problem, we go gluten free, we get much better, and then the blood test panel can't be done properly.  Here's a way you might want to proceed:  Get a gene test to find out if you have the celiac gene and/or gluten sensitivity pattern genes.  That will at least tell you that you have a predisposition to gluten sensitivity or celiac or not.  If your gene test shows one or more of the genes, and if you get better on a gluten free diet, you more or less have your answer anyway:  you must totally eliminate gluten from your diet forever.  If you jump through all kinds of hoops to get a firm celiac diagnosis, the solution is STILL a gluten free diet.

Also complicating testing protocols is that even when eating gluten up to the day of the blood test, a large percent of people will show a false negative.  When a biopsy is done, even with 5 samples taken the villous atrophy can easily be missed.  So through all that, you can still end up with a negative diagnosis in which your doctor will conclude you can go on eating gluten.

 I ended up in your situation....I stopped eating gluten too early and have never managed to get a solidly positive blood test.  Because of this, I couldn't get a biopsy.  I did get a gene test and that knowledge was helpful:  with a celiac gene I could eventually have celiac disease if I don't have it now, and with that celiac gene AND a gene sensitivity pattern gene, I can safely conclude that I have gluten sensitivity.  Either way, you have to stop eating gluten.  Much of the damage done if you are gluten sensitive is the same as if you have celiac.  You can have gluten sensitivity reactions for years and even decades before it is triggered into celiac disease.  I don't know much beyond the fact that I feel bad if I eat gluten, I feel normal when I stay away from it.  So in the end, I don't care which it is.

Consider yourself lucky that the solution to your issues can very likely be solved by avoiding gluten in your diet rather than taking all sorts of medications to try and help symptoms.  It's preferable to heal yourself and prevent further damage!

[Leslee12]

On 4/6/2021 at 3:33 AM, CMCM said:

This happens to a lot of us.  We figure out that gluten might be the problem, we go gluten free, we get much better, and then the blood test panel can't be done properly.  Here's a way you might want to proceed:  Get a gene test to find out if you have the celiac gene and/or gluten sensitivity pattern genes.  That will at least tell you that you have a predisposition to gluten sensitivity or celiac or not.  If your gene test shows one or more of the genes, and if you get better on a gluten free diet, you more or less have your answer anyway:  you must totally eliminate gluten from your diet forever.  If you jump through all kinds of hoops to get a firm celiac diagnosis, the solution is STILL a gluten free diet.

Also complicating testing protocols is that even when eating gluten up to the day of the blood test, a large percent of people will show a false negative.  When a biopsy is done, even with 5 samples taken the villous atrophy can easily be missed.  So through all that, you can still end up with a negative diagnosis in which your doctor will conclude you can go on eating gluten.

 I ended up in your situation....I stopped eating gluten too early and have never managed to get a solidly positive blood test.  Because of this, I couldn't get a biopsy.  I did get a gene test and that knowledge was helpful:  with a celiac gene I could eventually have celiac disease if I don't have it now, and with that celiac gene AND a gene sensitivity pattern gene, I can safely conclude that I have gluten sensitivity.  Either way, you have to stop eating gluten.  Much of the damage done if you are gluten sensitive is the same as if you have celiac.  You can have gluten sensitivity reactions for years and even decades before it is triggered into celiac disease.  I don't know much beyond the fact that I feel bad if I eat gluten, I feel normal when I stay away from it.  So in the end, I don't care which it is.

Consider yourself lucky that the solution to your issues can very likely be solved by avoiding gluten in your diet rather than taking all sorts of medications to try and help symptoms.  It's preferable to heal yourself and prevent further damage!

Yes thank you so very much and at last I have a solotion as I now know what is wrong .. I am 62 and even although I thought I was eating healthy I wasn’t bran flakes every thing in my cupboard had gluten I seriously couldn’t believe it so now no gluten for me I also have a life saving app called LiberEat which is brilliant and free I am honestly reborn it is brilliant ... just a note my grandma had digestive and bowel problems all her life is this hereditary 

thabk you so very much again 

Lesleyrose 

 

 

[Leslee12]

On 4/6/2021 at 3:33 AM, CMCM said:

This happens to a lot of us.  We figure out that gluten might be the problem, we go gluten free, we get much better, and then the blood test panel can't be done properly.  Here's a way you might want to proceed:  Get a gene test to find out if you have the celiac gene and/or gluten sensitivity pattern genes.  That will at least tell you that you have a predisposition to gluten sensitivity or celiac or not.  If your gene test shows one or more of the genes, and if you get better on a gluten free diet, you more or less have your answer anyway:  you must totally eliminate gluten from your diet forever.  If you jump through all kinds of hoops to get a firm celiac diagnosis, the solution is STILL a gluten free diet.

Also complicating testing protocols is that even when eating gluten up to the day of the blood test, a large percent of people will show a false negative.  When a biopsy is done, even with 5 samples taken the villous atrophy can easily be missed.  So through all that, you can still end up with a negative diagnosis in which your doctor will conclude you can go on eating gluten.

 I ended up in your situation....I stopped eating gluten too early and have never managed to get a solidly positive blood test.  Because of this, I couldn't get a biopsy.  I did get a gene test and that knowledge was helpful:  with a celiac gene I could eventually have celiac disease if I don't have it now, and with that celiac gene AND a gene sensitivity pattern gene, I can safely conclude that I have gluten sensitivity.  Either way, you have to stop eating gluten.  Much of the damage done if you are gluten sensitive is the same as if you have celiac.  You can have gluten sensitivity reactions for years and even decades before it is triggered into celiac disease.  I don't know much beyond the fact that I feel bad if I eat gluten, I feel normal when I stay away from it.  So in the end, I don't care which it is.

Consider yourself lucky that the solution to your issues can very likely be solved by avoiding gluten in your diet rather than taking all sorts of medications to try and help symptoms.  It's preferable to heal yourself and prevent further damage!

Thank you so very much yes answer obviously is to stay away from gluten completely.. I am 3 weeks in and just sent a post to someone being new still trying to find my way around the site gone are the sore muscles sickness constant bloating gone feeling ill all the time gone pain gone bowel problem gone heaviness and depression brain fog slowly becoming normal so lots of pluses negative I am weary feel like am in shock feel very lethargic tired not sleeping properly weak couldn’t work etc just as well I live alone 

any advice would be so much appreciated 

leslee

[cristiana]

HI Leslee

It takes a while to recover - although some things appear to improve in days, other things take much longer.   It also takes time to figure out that there may be other foods that are slowing down recovery - such as dairy and oats.   Add to this the confusion that sometimes we may have another condition that is causing symptoms that we mistake for the effects of gluten.   It takes time as we heal to sort all of this out.

For example,  I had persistent left sided bloating after going gluten free which only went after I gave up dairy for a spell.  But I also went through months of dizziness, thinking it was gluten, that turned out to be related to a neck injury (although, rather confusingly, I do feel dizzy when I'm glutened, but it is more acute, and subsides when the gluten has passed through my system).

No two recovery stories are alike - you will see on this forum some have miraculously speedy recoveries, others have taken much time to heal.  I have friends diagnosed the same time as me and they have bounced back - I have taken a while to recover.  We are all different.

If you do have any lingering issues that don't seem to be improving with the diet don't struggle alone - speak to your doctor or consultant.  Some people on this forum have thyroid issues and these can make us tired, etc.  Also, don't be afraid of supplementing under your doctor's supervision.  A good B complex and magnesium should help, and iron if it is low (but it is very important to have your levels checked periodically as overload is dangerous - one can have too much of a good thing!)

Aside this forum and joining Coeliac UK, I found the book Coeliac For Dummies very helpful.  There is a lot of information in there that I believe will help you.

C.