Not sure what this means now

[cristiana]

3 hours ago, Ellawells said:

Thank you so much for the information, I’m having a really hard time in thinking I am celiac, I’ve just looked at my original bloods taken in March and my endoymysial antibodies were normal but my serum endoymysium antibodies were positive, surely both would be positive if I was celiac. Oh and also I’ve had an enormous amount of paperwork and seems I am to be contacted for a covid test otherwise it can’t go ahead and even worse ( for me anyways) they are going through my nose for the endoscopy, not sure why 🤔 

Hi Ella

I'm afraid my knowledge of antibody types is very limited but I do recall my gastroenterologist told me one of my tests was strongly indicative of celiac, whereas the other (whatever it was!) was vague.  I can only think the NHS would only put you through this if there were sufficient grounds to give you an endoscopy.   I'm sorry it's so difficult what with Covid going on etc. and all the uncertainty of having a swab etc.   Hopefully all will go ahead soon so you can put the test behind you and at last know where you stand.  

On the nose endoscopy, I've just googled it as I didn't know such a thing existed and found a very helpful article.  I think I actually might request one myself if there is the option to have one, should I need another endoscopy one day (I've had three so far!) as it says they are "better tolerated".  I'm all for that!  

Cristiana 

https://www.leedsth.nhs.uk/a-z-of-services/endoscopy/about-your-procedure/transnasal-endoscopy/

[Ellawells]

Thanks again Christina for all your knowledge. I’ll let you know what it’s like, on the face of it, it does look like an easier procedure to have, I’m hoping it’s true 😊 I’m such a baby, I’ve had 2 c sections but this to me is an entirely more scary thing to have . 

[Onegiantcrunchie]

On 8/27/2021 at 7:59 PM, Ellawells said:

Thank you so much for the information, I’m having a really hard time in thinking I am celiac, I’ve just looked at my original bloods taken in March and my endoymysial antibodies were normal but my serum endoymysium antibodies were positive, surely both would be positive if I was celiac. Oh and also I’ve had an enormous amount of paperwork and seems I am to be contacted for a covid test otherwise it can’t go ahead and even worse ( for me anyways) they are going through my nose for the endoscopy, not sure why 🤔 

Hi Ella. In your first post you said you're historically anaemic - me too and I think that's one of the tell-tale signs of untreated coeliac. Because your gut is damaged you absorb less iron from food.

As far as endoscopy goes, I'm told it's relatively quick so it'll be over before you know it. If you've had a positive result then... well, when I went for my endoscopy, they told me that my positive bloods were "97% likely to be coeliac". I asked what the other 3% could indicate then, what other disease, and I was simply told "nothing sinister". To this day I don't know what a positive result could be if not coeliac. So, I'd say you probably do have it.

But please try not to fret too much. It's a bit of an adjustment but once you're used to it, it's just a matter of being a bit more careful with food. There are gluten-free substitutes for pretty much every food out there and many restaurants etc will try their best to cater to you.

Good luck anyhow

[AlwaysLearning]

Oh, I am sooooo jealous that you had a doctor that was smart enough to test you for celiac after seeing the anemia result! When I tested as anemic, my doctor just told me to eat more steak, which made no sense as I've never been a vegetarian. I had to waste another ten years and probably $10,000 on medical tests as I desperately tried to find a doctor to help me before I finally figured out gluten was to blame.

I can't imagine what it might be like to find out that you have something like celiac, that will have major ramifications on your life to stay gluten free, when you might not have even been aware that anything was wrong. But I can tell you that going gluten free can help you dodge a bunch of bullets when it comes to damage done to your body over the years. And after you do go gluten free, you are likely going to discover that it was causing tons of other symptoms that you've had all of your life and didn't know were abnormal. I feel soooooo much better now that I would never consider breaking my gluten free diet!

So congratulations on getting a diagnosis and finding the celiac forum, which can be a great source of information when getting started on your gluten free life!

 

[Ellawells]

Good evening 😊 thank you so much for everyone that has given me so much advice and time to reply to me..... just an update, I had my endoscopy today, it went down my throat not through my nose, not sure why but I was ok with that, I have to say after being so nervous it wasn’t anywhere near as bad as I thought it would be 😊 I feel fine just a bit bloated still. I have the initial information and everything looked fine but they said they wouldn’t be able to tell me anything, I just have to wait for the biopsy report. I’ll keep everyone posted and we’re wait and see. Huge hugs and thanks though to you all xx

[Yousaf]

Hello everyone in July I was diagnosed with celiac disease I had the symptoms of upset stomach I went on gluten free diet but my mother use to give me roti of gluten-free but use a little wheat in it she didn’t told me now I had the same issues that I had before with an addition I have itching that becomes swollen and red when I rub my skin also I have ant crawling feeling on my body I am very worried please help me out guys desperately waiting for positive response’s 

[trents]

40 minutes ago, Yousaf said:

Hello everyone in July I was diagnosed with celiac disease I had the symptoms of upset stomach I went on gluten free diet but my mother use to give me roti of gluten-free but use a little wheat in it she didn’t told me now I had the same issues that I had before with an addition I have itching that becomes swollen and red when I rub my skin also I have ant crawling feeling on my body I am very worried please help me out guys desperately waiting for positive response’s 

Yousasf, one of the classic signs of celiac disease is a skin condition called dermatitis herpetiformis, or DH for short.

[Yousaf]

11 hours ago, trents said:

Yousasf, one of the classic signs of celiac disease is a skin condition called dermatitis herpetiformis, or DH for short.

So now should i visit my allergy doctor for this would it get normal after taking medicines 

[trents]

5 hours ago, Yousaf said:

So now should i visit my allergy doctor for this would it get normal after taking medicines 

The most important thing for you to do about this is to begin eating totally gluten free. No medication will help much with the DH until you do that. You need to educate yourself concerning how and where gluten shows up in the food supply. It is found in many foods you would not suspect it to be. Like, soy sauce and canned tomato soup. It can be found in breakfast cereals that are not wheat/barley/rye based but have, "malt flavoring." It can be found in many small amounts in may foods that do not intentionally have gluten containing grains in them because of cross contamination during growing, transportation, storage and processing. Naturally gluten free foods can be cross contaminated in factories because it is being processed on the same equipment used to process things having wheat/barley/rye.

And very importantly, you need to help your mother and other family/friends learn about gluten so that you can eat safely on a regular basis and when participating in family gatherings. You and your mother need to become food label readers.

Eating out at restaurants is probably the biggest danger for most celiacs since you can't control what goes into the food or how it is cooked and handled as far as cross contamination goes.

As far as doctors go, a dermatologist would be the best one for DH. But you would have to explain that you think you may have DH because you have celiac disease. Even many dermatologists are not familiar with this skin condition. You might research DH on the internet and take a printout with you to the dermatologist.

And remember, celiac disease is not an allergy. It is an autoimmune disease. In this case, that means that eating gluten causes your body to attack itself. Gluten causes your body to attack the lining of your small intestine and your skin.

https://glutenfreern.com/gluten-free-primer/

[Ellawells]

Hi, just an update on my celiac journey...... I picked up my results today and I am celiac, bit of a shock considering I have no symptoms, I have large areas of complete flattening of villi and lots of other areas that are damaged but not flattened, doctor is calling me to discuss so I’ll keep you posted, 

thanks everyone for your time and information and looks like I’ll be a regular now 😊 x

[cristiana]

11 minutes ago, Ellawells said:

Hi, just an update on my celiac journey...... I picked up my results today and I am celiac, bit of a shock considering I have no symptoms, I have large areas of complete flattening of villi and lots of other areas that are damaged but not flattened, doctor is calling me to discuss so I’ll keep you posted, 

thanks everyone for your time and information and looks like I’ll be a regular now 😊 x

Hi Ella

Well... what can I say... thank you so much for keeping us posted, but I'm sorry that you have got coeliac disease.  That said,  I'm glad you have found out because it really is so much better to know.   You have found out before gluten has had a chance to have an impact on your health.  Will you be able to get your first degree relatives tested?  It's a really good idea. 

I'm posting a great thread at the bottom of this post so you can get a handle on what gluten free living will mean.   Don't worry if it takes a while to assimilate everything... just take one day at a time.

In the UK, you should get a referral to a nutritionist on the NHS, as well as annual reviews with a gastroenterologist to help keep you on the dietary straight and narrow (this should include an annual blood test to check for compliance and any other side issues, and a DEXA bone scan to check for osteoporosis).

Do think about joining Coeliac UK - they produce a printed food and drink guide as well as an app that will help you with your shopping. Now Natascha's Law has bee passed you should find labeling much more transparent.

It will be good to have a fellow Brit on board and we can share notes on the latest exciting development in the gluten-free aisles at Tescos!  (I'm waiting for McVities to start making gluten-free Penguins!  Let me know the moment you find a packet, won't you?!).

Stay in touch!

Cristiana

 

[trents]

Ella,

There are many "silent" celiacs out there who, like you have very minor or no GI symptoms. This is not that unusual and is a very big misconception, even within the medical community.

[Ellawells]

Ahh thanks Christiana, that’s a whole load of amazing information for me , I’ve downloaded the checker and had an hour of fun scanning my food cupboard. Doctor called and confirmed it, he’s done everything you said they would and put me on extra calcium and vitamin d, also he’s referred me back to the gastro department to be under their care from now on. He said my scan will be in a couple of weeks. I’m very impressed at the care considering covid is still very much around. 
I asked if my daughter could be tested and he said yes, she has serious gluten issues bless her, poor thing has just got over covid so not sure if she’ll be in a rush to get it done. 
I will definitely be on the lookout for those penguin bars, I love them 

thank you again for all your help from the very first post to now, it’s been a huge help xx

[cristiana]

43 minutes ago, Ellawells said:

 

thank you again for all your help from the very first post to now, it’s been a huge help xx

Wow... I see the first post was April!  WHERE DID THAT GO?!!  

Anyway, so glad to be of help - having been there right from the start I feel a bit like your coeliac fairy godmother!  Tee hee! xx

[Ellawells]

Ahh you definitely are, I’m sort of getting my head around it all now but very disappointed I can’t have my all time favourite crisps anymore 🙁 

I’ll move to the other forum now I’m positive, no doubt we will be meeting there x

 

[cristiana]

See you there!  

(And don't worry... almost every week it seems that a gluten free version of a product I've been missing appears in the gluten-free aisle!) 

Edited October 5, 2021 by cristiana