So… I'm a coeliac

[OrangesAndMelons]

  On 6/28/2019 at 1:58 PM, Ranchers Wife said:

Yeah, sorry about the being Celiac thing. Crying in the grocery store in the first months after diagnosis is unfortunately a Real Thing for a lot of us.

I don't have anemia, but gluten makes my monthly cycle go weird. Gets crazy heavy and irregular.

Sorry it's been an issue to get the exact information that you want from your doctor... but glad to hear that you are in good hands at your clinic.

You have a lot of help here, anyway, for the non medical questions and diet information.

Also glad to hear that your partner is helping you out with all of this. He is of course welcome here too if he wants information or just commiseration.

Expand Quote  

Thankfully no crying as yet, just yelling angrily at a yoghurt ? It's annoying with the DM2 and MAOI restrictions too.

Baking is one of my partner's hobbies, and he spent ages working on various low GI things for me, but now he has a new project ?

The doctor's letter says to ask my GP to prescribe me some iron but I'm not going to faff about with that, I'm just going to buy it at the appropriate dose. Not sure why he's encouraging me to get the NHS to pay for it!

[OrangesAndMelons]

Was walking thru the fruit department in the supermarket yesterday and almost walked straight into a display full of naked croissants spreading their dandruff everywhere ? Do I have to start washing my fruit in case someone touched it with gluteny hands? ?

[Ennis-TX]

  On 6/28/2019 at 2:13 PM, OrangesAndMelons said:

Was walking thru the fruit department in the supermarket yesterday and almost walked straight into a display full of naked croissants spreading their dandruff everywhere ? Do I have to start washing my fruit in case someone touched it with gluteny hands? ?

Expand Quote  

Yes you should wash your fruit and veggies...dear god I got glutened by veggies quite often from one store...they have the open veggies right next to a open air bakery where they are literally tossing dough in loose flour for making tortillas. >.< I started buying the bagged stuff but I still wash it.

PS most fruit and veggies have a chemical/wax coating anyway you should be washing off before consuming.

 

[OrangesAndMelons]

Ugh, what a pain in the arse.

I've never really cared much about waxes, polishes, pesticides, bird crap, or the fact pickers don't tend to have access to toilet facilities with washbasins, at least not enough to wash the fruit! But if they might be contaminated with gluten I guess I'll have to. It's funny how there's all this extreme care taken about "manufactured in a facility at which the lunchroom sometimes sells biscuits" but then we're expected to eat food from a supermarket where there's wheat bloody everywhere ?

[OrangesAndMelons]

There's even a couple of random rye-stalks growing in my back garden FFS. And patches of feral wheat growing on the verges by the pavement on the way to the doctors. It's stalking me… (ahem ahem ahem)

[Ennis-TX]

  On 6/28/2019 at 9:36 PM, OrangesAndMelons said:

There's even a couple of random rye-stalks growing in my back garden FFS. And patches of feral wheat growing on the verges by the pavement on the way to the doctors. It's stalking me… (ahem ahem ahem)

Expand Quote  

LOL, well you only need to worry about the seeds on them that contain gluten. But no issues unless your drying them out and mulching them or some how grinding the seeds where the powder can be inhaled (trapped in mucus in nose/throat then ingested later) or somehow in your mouth. You might want to go ahead and pull up the stalks in your garden and toss them in the trash like weeds.

[OrangesAndMelons]

It only bothers me because it's like they're taunting me — like a small child poking a lion with a stick through the bars of its cage ?

[Ennis-TX]

  On 6/28/2019 at 10:30 PM, OrangesAndMelons said:

It only bothers me because it's like they're taunting me — like a small child poking a lion with a stick through the bars of its cage ?

Expand Quote  

I feel defensive about it and people walking around with beers lol, I also have a corn and dairy allergy. I constantly feel like I am being stalked by people with poison trying to kill me. Bad enough being autistic but throw in that constant fear, ruined so many aspects of my life I just work for myself making safe place.

[OrangesAndMelons]

  On 6/28/2019 at 10:35 PM, Ennis_TX said:

I feel defensive about it and people walking around with beers lol, I also have a corn and dairy allergy. I constantly feel like I am being stalked by people with poison trying to kill me. Bad enough being autistic but throw in that constant fear, ruined so many aspects of my life I just work for myself making safe place.

Expand Quote  

Yes, I guess that's one of the serious sides of anything like this; the psychological burden of constant vigilance.

[squirmingitch]

  On 6/28/2019 at 7:38 AM, OrangesAndMelons said:

I mean it's very handy, not having periods, but I kept complaining to them because I was worried there was something wrong. It's not usually a great sign ?

Expand Quote  

There could be something wrong. I went to 6 OB/GYN's in 4 years trying to get one of them to acknowledge what I was telling them. My periods were basically non existent. A mini pad for one day would only have one spot on it. Sheesh! They have you fill out paperwork that ASKS if there are any changes; when you say yes & write it out, you expect them to pay attention. I would also TELL them to their face & tell them I was very concerned about it. They never acknowledged me. It was as if they were embarrassed! 

Ends up, I was sitting on the sofa one Sunday night watching a movie & the blood started flowing like mad & it wasn't even that time of the month. I bled & bled & bled. Ended up in the ER getting 2 transfusions and was diagnosed with a uterine fibroid (benign) but had to have a hysterectomy. That darn thing weighed 28 ounces!

So what I'm saying is, don't let that slip through the cracks. Find out the reason for it because there is a reason for it.

[OrangesAndMelons]

  On 6/28/2019 at 10:45 PM, squirmingitch said:

There could be something wrong. I went to 6 OB/GYN's in 4 years trying to get one of them to acknowledge what I was telling them. My periods were basically non existent. A mini pad for one day would only have one spot on it. Sheesh! They have you fill out paperwork that ASKS if there are any changes; when you say yes & write it out, you expect them to pay attention. I would also TELL them to their face & tell them I was very concerned about it. They never acknowledged me. It was as if they were embarrassed! 

Ends up, I was sitting on the sofa one Sunday night watching a movie & the blood started flowing like mad & it wasn't even that time of the month. I bled & bled & bled. Ended up in the ER getting 2 transfusions and was diagnosed with a uterine fibroid (benign) but had to have a hysterectomy. That darn thing weighed 28 ounces!

So what I'm saying is, don't let that slip through the cracks. Find out the reason for it because there is a reason for it.

Expand Quote  

Believe me, I've tried… you're very right, though; I have to continue trying. My lamotrigine was the culprit initially, I'm sure of it. But I'm now on half the dose I was, and my periods are even lighter! I mean, that could be the lithium, but I've not found anything to suggest that's the case. I'm at the point where I might need a pantyliner for one day, just in case there's a small mark, and in total I get about 2½ days of "period", but no more than that. To put that in context, my periods used to be 2 days of moderate bleeding needing about 5 regular tampons each day, then three days of lighter bleeding managed with a few extra-light tampons and some liners.

I'll ask my GP again if it doesn't come back on the iron tablets. I really bloody hope I haven't got an 800g fibroid; that's utterly gruesome ? You poor thing

And yes yes yes to doctors asking stuff then not giving a f$#% about the answer. I spent years being told to do mood charts by psychiatrists. Finally started doing them, only for them to seem surprised and confused by the fact I'd done them and not to bother looking at them.

[OrangesAndMelons]

Aaaaand another letter saying I need to supplement vitamin D now, on top of the iron ? Why can't he wait until all the results are in and send all the recommendations at once??

[Ennis-TX]

  On 7/2/2019 at 5:03 PM, OrangesAndMelons said:

Aaaaand another letter saying I need to supplement vitamin D now, on top of the iron ? Why can't he wait until all the results are in and send all the recommendations at once??

Expand Quote  

Aaaand the online support community basically predicted them from seeing hundreds of others with celiac. Well at least the doctor is giving your the results ASAP. Many people have to pester their doctors and keep asking and basically interrogate their doctors for answers and test results.

[Beverage]

It's really better to add supplements one at a time, giving each a little time to adjust and if there are any side effects that aren't working for you. I know from experience, had to track down 1 little thing that was causing my BP to go up, and it took awhile to eliminate everything, wait a week, add back 1 by 1, waiting a week in between. Of course it ended up being the very last thing we added back.  I suggest you just make a one page log sheet for everything you are adding with date and supplement, then if you have anything else acting up, you can go back and look at it.  It's amazing how with everything going on, it all can blur together.  The log sheet really helps.

[OrangesAndMelons]

  On 7/2/2019 at 6:48 PM, Ennis_TX said:

Aaaand the online support community basically predicted them from seeing hundreds of others with celiac. Well at least the doctor is giving your the results ASAP. Many people have to pester their doctors and keep asking and basically interrogate their doctors for answers and test results.

Expand Quote  

Yup, they did ? 

I don't like to supplement at the level you need in order to treat deficiency unless there's evidence I need it, though, so I guess it's good I've been tested.

 

  On 7/2/2019 at 6:52 PM, Beverage said:

It's really better to add supplements one at a time, giving each a little time to adjust and if there are any side effects that aren't working for you. I know from experience, had to track down 1 little thing that was causing my BP to go up, and it took awhile to eliminate everything, wait a week, add back 1 by 1, waiting a week in between. Of course it ended up being the very last thing we added back.  I suggest you just make a one page log sheet for everything you are adding with date and supplement, then if you have anything else acting up, you can go back and look at it.  It's amazing how with everything going on, it all can blur together.  The log sheet really helps.

Expand Quote  

I'm only adding iron and soon vitamin D, at least at the moment, but yes that's a good idea.

So far I just have gut pain, nausea and black s$#& from the iron, so it could be worse, I guess… I'll wait till that's eased off before I start the vitamin D. I track pretty much every medication because of my bipolar disorder.

 

[Ennis-TX]

  On 7/2/2019 at 7:15 PM, OrangesAndMelons said:

Yup, they did ? 

I don't like to supplement at the level you need in order to treat deficiency unless there's evidence I need it, though, so I guess it's good I've been tested.

 

I'm only adding iron and soon vitamin D, at least at the moment, but yes that's a good idea.

So far I just have gut pain, nausea and black s$#& from the iron, so it could be worse, I guess… I'll wait till that's eased off before I start the vitamin D. I track pretty much every medication because of my bipolar disorder.

 

Expand Quote  

I recently found Topical Iron Patches you place on your skin for iron supplementation. Might be worth looking into, I think I did a post on them last week in the medications/food section. >.< I myself used high iron food like pea protein by growing naturals but was only able to get my iron up when I started taking Vitamin C also. It seems to boost your absorption of it.
https://www.celiac.com/forums/topic/125016-iron-and-vitamin-topical-patches/

 

[OrangesAndMelons]

  On 7/2/2019 at 7:21 PM, Ennis_TX said:

I recently found Topical Iron Patches you place on your skin for iron supplementation. Might be worth looking into, I think I did a post on them last week in the medications/food section. >.< I myself used high iron food like pea protein by growing naturals but was only able to get my iron up when I started taking Vitamin C also. It seems to boost your absorption of it.
https://www.celiac.com/forums/topic/125016-iron-and-vitamin-topical-patches/

 

Expand Quote  

I love the idea of those iron patches! It looks like I'd need 14 patches a day to get the dose I'm meant to have, though ? Maybe when I'm up to the right level it would be enough to sustain it. I hate that I have to take so many damn tablets. Am planning to get vitamin C at some point to help with the absorption, thanks for the reminder!