Wheat Allergy

[MzMillz]

I am in desperate need of some help. I am in the UK. I’m currently trying to get an allergist. I need some clarification. Facebook groups are not getting me anywhere. I think after speaking to a woman who has a weed allergy for 35 years I have been minimally poisoning myself.  I always assumed that gluten-free meant it was safe for me to eat only to find out that that’s not the case.. I did not know that gluten-free products contain small amounts of gluten still and I found out the hard way by eating some gluten-free mozzarella sticks. I’m told to stay away from dextrose, spirit vinegar, maltodextrin , citric acid and if anything just states starch but not what type. I’m really struggling mentally and emotionally here. I just really need some clarification and some help. 

[trents]

Welcome to the forum, @MzMillz!

Some clarification from you first, please. Your post's subject line says "Wheat Allergy". Yet, your actual post speaks of avoiding gluten as if you may have celiac disease. Celiac disease is not an allergy. It is an autoimmune disorder. Have you been officially diagnosed with celiac disease?

[cristiana]

Hi @MzMillz and welcome to the forum.  I am a UK coeliac.   I hope I might be able to help as a UK coeliac who is conversant with the NHS system, and have a friend who whilst isn't a coeliac had to try to work out what was causing an allergy through the private health route in the UK.

But first, I agree with @trents  that it would be good to know if you have been diagnosed with coeliac disease?

[MzMillz]

No I don’t have coeliac disease , I have a wheat allergy with epi pens. I’m just stating how everything seems so confusing. I didn’t know that some gluten free product still contained gluten. When I went to the allergist, she said I was allergic to 

Rye ,barley , wheat, spelt , semolina & rusk. 
 

I feel like I’m learning everything all over again. And I just feel a bit lost and overwhelmed. I don’t know what I’m being told is that or not? I’m trying to get an allergist here in the UK.

 

Hi Christina , sorry I did a reply early to Trent and it didn’t go through , it explains it all. IM originally from Canada so things are a bit different here . Just really needing some gudiance 

[cristiana]

Thanks for the reply, I can see how confusing this all must be.

A wheat allergy is certainly a whole different ball game to coeliac disease.  

Did this allergy suddenly present itself?  Or is it something that has been building over the years?   It might be helpful to know if you have ever been tested for coeliac disease, too.

Sorry for three more questions, but it would b helpful to know a little more about how this has come about.

[MzMillz]

6 minutes ago, cristiana said:

Thanks for the reply, I can see how confusing this all must be.

A wheat allergy is certainly a whole different ball game to coeliac disease.  

Did this allergy suddenly present itself?  Or is it something that has been building over the years?   It might be helpful to know if you have ever been tested for coeliac disease, too.

Sorry for three more questions, but it would b helpful to know a little more about how this has come about.

So about 9 years ago it started I would eat something containing wheat my tongue would start to tingle and I would black out , come to with sweat pouring down my body. I chalked it up to an allergy , anytime I would have gluten this would happen, or even when I would eat something that would say may contain. I moved to the UK 3 years ago and I noticed I now couldn’t bake or cook with gluten ( I would for my kids ) my throat started to get tight when I was baking cupcakes with regular flour , so I removed it from my house . These last few months I’ve had a few reactions the worst one was some mozzarella sticks from Sainsbury’s I was violently sick , it said gluten free I assumed it was safe as I didn’t know I needed to be also eating things that say wheat free. I had some Gluten free granola days before this happened my tongue started to tingly , I used some Hawaiian tropic after sun on my face same thing happened , I was in panic mode because I thought I was going to go down. I went to this woman here Ruth Tophill she does allergy testing with this metal thing sorry I don’t know exactly what it’s called but it tests all your levels of everything and can tell you your allergies. I’ve not be tested by a GP for any of this it’s pretty much been a self diagnosis.  

[cristiana]

My friend who has an allergy has experienced huge problems trying to find out what she was allergic too, and then finally being able to find someone qualified and affordable who could test her.  She felt yeast was a problem, he confirmed it.  But as has been your experience, she's really had to go down this route without the support of a GP and it took a couple of years to sort out.    Her GP has listened to her finally, though, as she too now carries an epipen.

My feeling is that if you have an allergy to gluten, a lot of certified gluten-free substitutes (bread, pasta, cake etc) will be unsuitable for you as they can contain up to 20ppm of gluten.

I hope others will be able to chime in for now, because, forgive me,  I have to finish here tonight, I've not had supper yet and need to catch up with the family, but will come back tomorrow to see if I can help further then.

 

 

 

Edited August 15, 2024 by cristiana

[MzMillz]

10 minutes ago, cristiana said:

My friend who has an allergy has experienced huge problems trying to find out what she was allergic too, and then finally being able to find someone qualified and affordable who could test her.  She felt yeast was a problem, he confirmed it.  But as has been your experience, she's really had to go down this route without the support of a GP and it took a couple of years to sort out.    Her GP has listened to her finally, though, as she too now carries an epipen.

My feeling is that if you have an allergy to gluten, a lot of certified gluten-free substitutes (bread, pasta, cake etc) will be unsuitable for you as they can contain up to 20ppm of gluten.

I hope others will be able to chime in for now, because, forgive me,  I have to finish here tonight, I've not had supper yet and need to catch up with the family, but will come back tomorrow to see if I can help further then.

 

 

 

Thank you for even responding, I’m hoping to really get to the bottom of it . I’ve just been buying things now that say gluten free wheat free together. I haven’t tried to eat it yet as my anxiety is so high with it still. I’ve been living off of fresh foods but I leave tomorrow for my holiday so not sure what I’m going to do. But I’m already down 6 pounds so far because of the lack of things I’m eating. Just wanna get back from this holiday and start harassing my GP. I’ve posted in my local towns gluten free group asking if anyone has seen an allergist it’s only been approve with in the hour and I posted days ago lol so we’ll see. Enjoy your dinner and family time

[cristiana]

35 minutes ago, MzMillz said:

Thank you for even responding, I’m hoping to really get to the bottom of it . I’ve just been buying things now that say gluten free wheat free together. I haven’t tried to eat it yet as my anxiety is so high with it still. I’ve been living off of fresh foods but I leave tomorrow for my holiday so not sure what I’m going to do. But I’m already down 6 pounds so far because of the lack of things I’m eating. Just wanna get back from this holiday and start harassing my GP. I’ve posted in my local towns gluten free group asking if anyone has seen an allergist it’s only been approve with in the hour and I posted days ago lol so we’ll see. Enjoy your dinner and family time

Back again - hubby has gone upstairs to do something so I thought I'd just check your post.  It is tough what you are going through.

All I can say is try when on holiday keep eating whole foods that are naturally gluten free; make sure to wash any vegetables or fruit that might have been stored near gluten (or make sure catering staff are aware).  Make sure that anything you do eat is not prepared on a board which might have been used to prepare gluten.  I was once served a salad that had been prepared on a bread board - I could even see the crumbs! 

I hope you have a good holiday. 

Cristiana

Edited August 15, 2024 by cristiana

[trents]

cristiana, correction to something you posted earlier in this thread. Certified Gluten Free products contain less than 10ppm of gluten. Gluten Free products contain less than 20ppm of gluten, at least that is the standard here in the USA. But the CFGF is an international standard.

[cristiana]

10 hours ago, trents said:

cristiana, correction to something you posted earlier in this thread. Certified Gluten Free products contain less than 10ppm of gluten. Gluten Free products contain less than 20ppm of gluten, at least that is the standard here in the USA. But the CFGF is an international standard.

Hi @trents.  I think I should have also worded it 'less than'.   I didn't know this difference existed, thanks for the clarification.

 

[cristiana]

@MzMillz   Hello again.   

As it sounds that you are dealing with an allergy as opposed to Coeliac Disease (although there may be a chance that you have both) I think you might be best to contact the Allergy UK helpline for further advice and support and to find out what sort of help you can get in this country.  I have not used their services but they are recommended on the NHS website.

https://www.allergyuk.org/our-services/helpline/   

https://www.nhs.uk/conditions/food-allergy/

As I said in an earlier post, my friend found it quite a process getting tested and in the end decided to get tested privately.  But she is getting support from the NHS now.  I am not sure if it is the same in Canada, but in this country seeing a specialist privately can sometimes speed things up a bit.  They might be able to refer you on elsewhere for further support.

Do come back to us if we can help further.

Cristiana

Edited August 16, 2024 by cristiana

[MzMillz]

8 hours ago, cristiana said:

@MzMillz   Hello again.   

As it sounds that you are dealing with an allergy as opposed to Coeliac Disease (although there may be a chance that you have both) I think you might be best to contact the Allergy UK helpline for further advice and support and to find out what sort of help you can get in this country.  I have not used their services but they are recommended on the NHS website.

https://www.allergyuk.org/our-services/helpline/   

https://www.nhs.uk/conditions/food-allergy/

As I said in an earlier post, my friend found it quite a process getting tested and in the end decided to get tested privately.  But she is getting support from the NHS now.  I am not sure if it is the same in Canada, but in this country seeing a specialist privately can sometimes speed things up a bit.  They might be able to refer you on elsewhere for further support.

Do come back to us if we can help further.

Cristiana

Hi cristiana 

 

thank you so much ! When I get back to the UK I will definitely look into all of this. I’m fully prepared to go private at this point too . Thank you for all your help and I will definitely report back when I have some answers!