Help please

[felicity31r]

Hello I really need some help with being coeliac.

It happened after I gave birth to my son age 28, two years ago  since then my level has gone from over 100 to 30 something. But I can't get it budging from that in the past two years.

I don't eat gluten at all , I handle it at home but always washing hands, between meals  all seperate boards , plates, etc.

I'm so scared of internal damage I'm so fed up.

[cristiana]

Hello Felicity and welcome to the forum!

You are not alone.  I too have had huge trouble getting my numbers to go down.  It is so dispiriting when one feels one is doing one's level best.

I was diagnosed in the UK back in 2013 and my TTG test came back showing >100.   The cut-off in most UK labs for TTG tests is 100 so perhaps my numbers were a lot higher, I will never know.  

It took me about 9 years to get my numbers to normal, that is <15.  My best number has been 9 (last year) and this year my numbers had gone up to 15 in my annual blood test.    So annoying - but just prior to that last test I know for sure I was glutened by inadvertently eating some chocolate which had wheat in it (why DO they put flour in chocolate?!!)  so I'm hoping it was a blip.

I think perhaps some contributing factors in my slow recovery to normal figures have included a dodgy dishwasher that left a residue (I share a house with gluten-eating family); an iron tonic which contained gluten (I mixed up Floradix with Floravital - very similar packaging) and the biggie was, I think, eating out.  There are so many ways food can be cross contaminated, it's a minefield.   Oh - and perhaps one other thing: an old oven.  When our last one packed up we decided when using the new oven I'd have the bottom oven, the family would use the top oven.  

In all this time my gastroenterologist didn't seem to fret.  He felt I think that if my numbers were generally coming down or at least not going up that was a good sign.   (I do wonder if he thought I was cheating - but he never let on if he did!)

I can't put my finger on the study just now but I've seen mention on this forum that perhaps dairy can slow down recovery.  I hope someone else will chime in and if they confirm that's correct, you might wish to give it a miss for a while to see if that helps.  (I never gave up dairy.)

Cristiana

 

 

Edited November 28, 2022 by cristiana
correction typo

[Scott Adams]

Hopefully you avoid eating in restaurants, as they can be a common source of contamination. This article may be helpful:

 

[trents]

felicity31r,  what number are you referring to? There are a number of serum antibody tests that can be run to detect celiac disease. The most common one is the tTG-IGA. Can you be more specific about the tests run and can you supply the reference ranges used by the lab to differentiate between what is negative and what is positive? There is no standard reference range. Each lab uses their own custom range and without that it is difficult to evaluate your test scores.

Are you still consuming dairy and oats, even gluten free oats?

[cristiana]

48 minutes ago, Scott Adams said:

Hopefully you avoid eating in restaurants, as they can be a common source of contamination. This article may be helpful:

 

My friend is a restaurant inspector in the UK for Health and Safety.  She says she's seen enough in her job to decide that she'd never eat out in a restaurant in the UK if she were a coeliac. There are of course exceptions, but it pays to be very careful.

[RMJ]

It took me 6 years to get all my antibody levels into the normal range. My husband still eats gluten but we keep things well separated in the kitchen.

Have you tried the “Fasano Diet”?  It is a trial diet to eliminate any possible sources of cross-contamination. 

Fasano Diet

Do you eat oats?  Some with celiac react even to certified gluten free oats.

I started by reading labels and not eating anything with gluten-containing ingredients.  Antibody levels lower, but it wasn’t enough.  Then I made sure anything processed was labeled gluten free.  That wasn’t enough.  Now if I eat processed foods I make sure they are certified gluten free, or from companies with excellent reputations in the celiac community.

[Lorraine Russo]

5 hours ago, felicity31r said:

Hello I really need some help with being coeliac.

It happened after I gave birth to my son age 28, two years ago  since then my level has gone from over 100 to 30 something. But I can't get it budging from that in the past two years.

I don't eat gluten at all , I handle it at home but always washing hands, between meals  all seperate boards , plates, etc.

I'm so scared of internal damage I'm so fed up.

Hi. Just wondering, do you share a toaster with other people in your household that make toast with bread that contains gluten?? You must have a separate toaster that is strictly for gluten-free bread. Also, check your soaps, shampoo, conditioner, and other products that go on your body. Everything must be free of gluten. I honestly didn’t heal until my entire household was free of all gluten products so there was no cross contamination.

[felicity31r]

Hello everyone thank you so so much for your responses.

I was unsure on what exact test it was, an antibody test but the doctor had put in brackets that normal was 0-10. So I'm still three times over.

I don't have oats , but I find any processed gluten free food or any food such as chocolate or anything which doesn't state gluten as ingredient/may contain still upsets the stomach. I don't know whether I should just go full on for all natural with no risk of contamination.

I have two young children who constantly eat gluten, have sticky hands all over house, husband who eats gluten too. It's a battle of trying to make sure I don't get any crumb near me every day . It's so hard! I can't make them go gluten free so don't know next best option.we have seperate toasters, they have their food generally done in air fryer and mine in oven. I do eat out sometimes too but not much at all. 

Doctors haven't really helped just told me to read labels properly! Which of course I do, I spend my whole life reading labels lol.

Thanks so much for all your responses really means a lot 

[Lorraine Russo]

3 hours ago, felicity31r said:

Hello everyone thank you so so much for your responses.

I was unsure on what exact test it was, an antibody test but the doctor had put in brackets that normal was 0-10. So I'm still three times over.

I don't have oats , but I find any processed gluten free food or any food such as chocolate or anything which doesn't state gluten as ingredient/may contain still upsets the stomach. I don't know whether I should just go full on for all natural with no risk of contamination.

I have two young children who constantly eat gluten, have sticky hands all over house, husband who eats gluten too. It's a battle of trying to make sure I don't get any crumb near me every day . It's so hard! I can't make them go gluten free so don't know next best option.we have seperate toasters, they have their food generally done in air fryer and mine in oven. I do eat out sometimes too but not much at all. 

Doctors haven't really helped just told me to read labels properly! Which of course I do, I spend my whole life reading labels lol.

Thanks so much for all your responses really means a lot 

My household is completely gluten free but I babysit three times a week in my daughter-in-law’s house which is not gluten free. Any time I must handle or clean up gluten I wear nitrile gloves that you can purchase at your drugstore. You can rinse them and dry them with a tossable paper towel so you don’t touch crumbs when you reuse them. This might do the trick for you because when you are exposed to gluten you will be sick for a week and then it just becomes a trail of repeat exposures. I buy mine in CVS. They are blue.

[cristiana]

Hi Felicity

I've seen your spelling of "coeliac" - this would suggest to me that, like me, you may be British?  If so, have you joined Coeliac UK?   

I ask because I understand they have an app which you can use with your smartphone when you go shopping that tells you if what you are buying is on their safe list.   

I don't have a smart phone so have never used it, but when I was really trying to get my numbers down, one of the things I did do was follow their Gluten Free Food and Drink Guides to the letter and I think it helped.   If food or drink wasn't in the directory, I didn't eat it.  Although I think trying to eat as many whole foods as you can is also a really good idea, because at any stage in manufacturing there is scope for gluten sneaking in.

One thing to check too is that you are not eating products which "Might also contain gluten".  It is a bug bear of mine that sometimes manufacturers in this country put this very important information as a sort of afterthought.  I've missed it more than once on food labels. 

Re: chocolate.  Is there one brand in particular you are struggling with?  I love Cadbury's Dairy Milk chocolate bars, but can't eat them because they contain wheat.  However,  I can eat the Dairy Milk Classic Chunks which are individually wrapped, do not contain gluten and that are, for some reason, only out around Christmas.  (I always hope a Cadbury's senior executive is reading my posts and will do something about it!)

 

 

 

Edited November 30, 2022 by cristiana

[itarachiu]

9 hours ago, felicity31r said:

I have two young children who constantly eat gluten, have sticky hands all over house, husband who eats gluten too.

I live in a house with a familly that eats gluten too. 1 month ago I found out that breathing steam oil with wheat flour on it caused me a reaction. I was talking with my mother for a few minutes in the kitchen while she was cooking some fish wrapped in wheat flour, I got instant reaction and the thing is probably it did happened before many times but I didn't made the connection because it was much easier to blame some foods or some other things. This time I got lucky because I didn't eat nothing in the last few hours when the reaction happened so it was easy to identify.

Also another important change in my lifestyle, I bought new spoons, knifes, you name it, everything to cook and eat, now I wash everything by myself, nobody touches my stuff that is related to food, I cook my meals. It's therapy for me now to actually make food. Even before I was cooking but sometimes I was eating food made by my familly if didn't contained gluten.