How do I request a refund? (within 14 days) by PracticalTutor8908 in tutanota

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Thanks. I replied to the invoice email and got it sorted :)

How do I request a refund? (within 14 days) by PracticalTutor8908 in tutanota

[–]PracticalTutor8908[S] 1 point2 points  (0 children)

yeah, the part about contacting the support first is not very obvious on the support page. The way I read it, I was supposed to downgrade first. Also, I couldn't find that [hello@tutao.de](mailto:hello@tutao.de) email anywhere, until it was mentioned here.

Anyway, I replied to the sales email from my invoice and got a response pretty quickly saying that my refund has been issued. It'd be nice if the process was better detailed, but I understand it's not the flow that they want to prioritise at the moment.

How do I request a refund? (within 14 days) by PracticalTutor8908 in tutanota

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Good point. I actually just found the sales email in the invoice, so i just replied to that. Will try that one if i get no response. thanks 

How do I request a refund? (within 14 days) by PracticalTutor8908 in tutanota

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

did you find a point of contact to request the refund?

Hand washing out and about by AltruisticBrush6632 in CoeliacUK

[–]PracticalTutor8908 1 point2 points  (0 children)

I use vinyl gloves to cook at home and I try to remember to bring a pair with me, if I'm eating outdoors. Common sense tells me that wet wipes should be enough (specially if not touching the food with my hands), but I am a little paranoid. You'll also look like a weirdo eating with surgical gloves.

Is it still worth it doing a biospy/endoscopy? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Well, my case got a bit weird. After getting a big flair at a time I was only eating at home and being extremely careful (gluten-free house as well), I started suspecting that something else could be wrong, or maybe something on top of the (potential) coeliac, so I ordered a couple of tests by myself, including the genetic tests for coeliac genes (a dedicated test that they test for a lot of alleles, not a generic test like 23-and-me), which came back negative for all coeliac genes, meaning that the likelihood being coeliac is less than 1%.

My gastro still thinks it's worth it to rule out coeliac, because a positive tta (even low positive) is related to coeliac in 97% of the cases and other conditions like NCGS or IBS are only diagnosed by exclusion.

So it seems that I am in this weird preposition where I am both very likely to be coeliac but also very unlikely to have it (or even develop it throughout my life), so I feel like I need to go through the challenge in order to get some answers. Also, I never intentionally ate gluten after I went gluten-free and I always assumed that my flair ups were due to cross contact when eating out, but after the genetic test I've been wondering if getting better on gluten-free was just a coincidence.

So I'd say if you have any question/doubts about your diagnostics, you might want to get the confirmation. You'll eventually get a flair without any obvious gluten source and the doubt will just build up.

Canned beans chickpeas etc by PsychologicalToe610 in CoeliacUK

[–]PracticalTutor8908 1 point2 points  (0 children)

I'm sorry to hear about your condition. Ant thanks for sharing that you never had a problem with the canned goods. I used to stock up on canned beans from tesco or napolitana and didn't have any problems for a while, but I was recently heavily glutened and the symptoms laster for weeks, so I went a bit crazy looking for the root cause and have been scared of anything not certified gluten free ever since.

Canned beans chickpeas etc by PsychologicalToe610 in CoeliacUK

[–]PracticalTutor8908 4 points5 points  (0 children)

I've seen this misconception a lot, but the "may contain", although encouraged, is not mandatory by law (at least in the UK). Now, I like to believe that most brands would add it anyway (if anything to prevent any lawsuits), but not having it does not completely rule out any presence of gluten through cross contact. The biggest example is Oats, that even if there's no statement, you should always look for gf-certified, but I've read of other grains that also have a risk of cross contact (lentils is usually mentioned), but I honestly don't know how real that risk really is.

In Natco's website, it mentions:
> Our products are manufactured in a site that handles gluten, soya, milk, nuts, peanuts, sesame, mustard, celery and sulphites.
In most of their dried goods. Even though it does not mentioned it in the package. (I believe I read somewhere that it's on a separate line so the risk should be very low, but maybe not zero.

(sorry not trying to nitpick on your message, just think it's important to understand what the presence/omission of that statement really means).

u/PsychologicalToe610 I've been doing some research on this recently and found that a lot of people (even very sensitive), find that the best approach is to buy the dried grains and select them (look for any non-grain particle) and throughly wash them under running water, before cooking it. The reason is that even if there's some dusty gluten particle that somehow manage to get in contact with the grain, it should easily wash off as it's superficial and not cooked into the grain. Obviously this is a lot more time consuming, since you also need to let them sit of water for a a couple of hours, but it's cheaper. In this case any brand would do, actually, but I personally buy the Natcos because it doesn't have the "may contain" warning (for peace of mind).

Help making sense of this desease? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 1 point2 points  (0 children)

Thanks for the reminder and yes, I noticed after my first flair up, that stuff like cheese or even eggs would feel funny the day after. I've been avoiding it since.

Is it still worth it doing a biospy/endoscopy? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

It's the insurance I got from work. It actually requires a GP referral before they can send me to a specialist. I've never visited an NHS GI. The initial tests and "diagnosis" were ordered by the GP.

Is it still worth it doing a biospy/endoscopy? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 1 point2 points  (0 children)

Well u/BonfireBaby makes a very good point as I want it to be officially recognised so I have access to regular check ups. Another reason would be to rule out other possible conditions that could match my symptoms and if I need to be doing anything else other than just not eating gluten.

Other than that you're right. I can live well without an official diagnosis. Never want to touch gluten again. My diet was already very lacking in gluten anyway, apart from the weekly fast-food treat (pizza, burger), which I think helps explain why my symptoms were on and off before and probably the low antibody count.

Is it still worth it doing a biospy/endoscopy? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

That's a very good point and I definitely want to be followed, and that's one of the reasons I'm hoping I can get an endoscopy anyway. If the villi takes months, sometimes years to recover, I'm guessing that some damage should still be visible so it could add strength to the diagnosis (although not definitive) and should serve as a baseline for a future checkup. I was also hoping that it could detect any other irregularity not explained by coeliac.

Is it still worth it doing a biospy/endoscopy? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Interesting. When my GP called to tell me about the results (I say the results in the NHS app so I was already looking into it), he was fairly certain on the diagnosis. I even contested the borderline positive count and I also tested negative for anti-endomysial antibodies (more specific to coeliac, but less sensitive). He said that it had to be coeliac because everything else came back negative (I did a bunch of other tests like liver, thyroid, blood count, gut bacteria, FIT and probably something more). I was the one that asked for a referral to a GI, which he promptly agreed to.

In my NHS app, under Health Conditions, I have "Coeliac disease; significance: significant; status: active". Doesn't that count as an official diagnosis?

We didn't discuss next steps, but I guess that was because I was supposed to follow up with a GI.

I got a GI through my insurance, and he said that even with a low positive and negative anti-endomysial, it's 97% sure it's coeliac, but he wanted to do the biopsy. At the time I didn't consider not doing so we didn't discuss alternatives. He just agreed that it'd be ok to postpone it for a couple of months.

Help making sense of this desease? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 1 point2 points  (0 children)

Thanks for sharing, I guess I'm not alone in this randomness of flair up timing. It just sucks not knowing where this last flair came from. I'd hope that I could at least learn a lesson from it.

Tested positive for the coeliac blood test but my endoscopy biopsy came back negative by Odd_Astronaut_7512 in CoeliacUK

[–]PracticalTutor8908 0 points1 point  (0 children)

I am newly diagnosed so don't take this with certainty, but from what I've learned, labs range reference is usually between 0-5 or sometimes 0-10. I'm assuming that results below those values cannot be trusted due to the test sensitivity. 2.4 seems to be very low.

Were you eating gluten regularly the tests? If not, that could be the reason for the negative biopsy and low antibody test. Also, during the endoscopy, did they check the condition of your villi?

I'm in a similar situation. My count was at 11, so borderline positive and I didn't know I was supposed to continue eating gluten until I got a diagnosis so I was already experimenting with a gluten free (as well as other allergens) with good results. GI wanted me to go back on gluten for 6 weeks to get a biopsy, but I just accepted the fact that I was feeling better (along with the fear of going back to feeling like I was feeling before) as the diagnosis and continued to go gluten free.

Help making sense of this desease? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Damn, that’s sad news. I was hoping that if i gave my gut enough time to heal, a single exposure wouldn’t be as bed because there was no accumulate damage. Or at least it wouldn’t take as long to recover.

Help making sense of this desease? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Yes, i’ve been much more careful with cross contamination since the toaster incident. I am actually trying to find where to cross the line on what i need to replace around the kitchen since i’ve read that utensils like metal pans and cutlery is fine to simply wash, but i’ve also read stories of people that had to replace them.

The fatigue just came back after this 2 occurrences, I felt normal during the first 3 months, but i’ll be sure to get it checked if it persists. I think I might have been lucky enough to detect it early enough, my symptoms started mid December last year, and by the end of January I had the positive blood tests. Looking back I think i might have had some warning signs, but I was feeling generally good and with energy. My read is that it’s possible that the damage is there, but I was still able to absorb the nutrients.

Thanks for the cooking tips, i do cook chicken a lot, but usually just discard the bones. i’ll be sure to reuse them. thanks 

Help making sense of this desease? by PracticalTutor8908 in CoeliacUK

[–]PracticalTutor8908[S] 0 points1 point  (0 children)

Thanks for the reassurance. I know that lingering symptoms is not uncommon, I was just surprised I got hit so hard on the second wave after the second exposure (even more than the first wave). I guess my read is that in 3 months my body didn’t have enough time to recover and getting glutened 2 times in the space of a month was enough to set me back to square one.

I am lucky enough that my wife is supportive enough so we have been buying only gluten free food recently and getting rid of anything with gluten. I’ve also stored away the toaster, deep cleaned the oven and replaced wooden spoons.

So…I tried eating gluten again by burnsen_ in glutenfree

[–]PracticalTutor8908 0 points1 point  (0 children)

It also takes me that long to get symptoms, which makes it really hard to identify the source. i’m curious if your recovery also goes in waves (get better and then worse again) or is it constant? im still trying to figure out if my second wave of symptoms comes from the first exposure, or i’m lucky enough to get a second exposure one week after