Just Diagnosed

[DaveCH 2]

Hi im male age 37 and was having maybe every 4 weeks trapped wind loud stomach noises and went for blood checks with GP. All was fine although wasn't checked for Celiacs but my iron ferritin was at 11 and my folate was low. GP put it down to all the marathon training i was doing but I wasn't convinced. Im in the UK so the GP is through the NHS but I went private to see a gastro doctor who performed an Endoscopy and Colonoscopy. A very small polyp was found which is benign and he was pretty sure I was suffering from Celiacs after performing the endoscopy. The biopsies came back and confirmed it was Celiacs. I have to now go for bloods as a second confirmation and to check my vitamin levels etc. I was expecting something really bad so I should be happy with this diagnosis. The only thing concerning me is the increase in Cancers with being untreated. My gastro said people usually have this for 10 - 15 years before diagnosis. Is the cancer thing something to be worried about or is that after a very long time of not being diagnosed later in life, I haven't had a chance to speak to my gastro about this.

Many Thanks

Dave

[Ennis_TX 817]

Welcome to the forums and the club you never really wanted to join. To address your cancer issues, I am under the understanding that your chances of getting cancer significantly decrease once you start the gluten free diet and stay on it. Funny fact many of us on this diet are forced to eat cleaner and healthier foods if we stick to the whole foods approach which is suggested for your first few months after diagnosis to boost healing. I do suggest reading the newbie 101 section, this is a bit more then a diet change, you have to clean out  the house pretty much and decon your kitchen. New cook ware mostly unless you have a self clean cycle on your oven and can heat it too over 500F and destroy the protein, IE cast iron can be saved by this method. New cutting boards, toasters, throw  out the colander, and any Tupperware or scratched pots and pans. Any condiment that has ad a knife e stuck in it needs to go for crumb CC and you will have to go through your spices etc. I can provide aa list of some gluten-free alternatives to foods, spices, etc and how and where to get them. Many things your just  changing brands. For now focus on whole foods with a just a few ingredients til you get the diet and label reading down. Many suggest removing dairy and oats for a few months.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/119661-gluten-free-food-alternative-list-2017/

[Essexman 0]

I am stunned to read this, DaveCH please listen to real professionals. 

Seeing a comment stating you need completely new cookware is beyond belief. You do not need to 'Decon' your kitchen. 

Just stick to being gluten free, no need to fear someone touching your plate with a 'contaminated' cutting board. 

Live your life, please- you only have one so enjoy it. The fear these quacks create is not healthy. 

[kareng 2,318]

10 minutes ago, Essexman said:

I am stunned to read this, DaveCH please listen to real professionals. 

Seeing a comment stating you need completely new cookware is beyond belief. You do not need to 'Decon' your kitchen. 

Just stick to being gluten free, no need to fear someone touching your plate with a 'contaminated' cutting board. 

Live your life, please- you only have one so enjoy it. The fear these quacks create is not healthy. 

I agree - some of this stuff is a bit overboard.  But a person diagnosed with Celiac might want to clean out the drawers (crumbs always fall in them) and colanders that were used for gluten pasta will probably always have some gluten goo in them - its very hard to clean out every little hole.  The basic rule is to get rid or avoid things that retain gluten.  They need to use a separate peanut butter,etc if people put knives with bread crumbs back in them.   toasters are full of crumbs - get a new one for gluten-free only (not expensive)

Edited November 1, 2017 by kareng

[Ennis_TX 817]

36 minutes ago, Essexman said:

I am stunned to read this, DaveCH please listen to real professionals. 

Seeing a comment stating you need completely new cookware is beyond belief. You do not need to 'Decon' your kitchen. 

Just stick to being gluten free, no need to fear someone touching your plate with a 'contaminated' cutting board. 

Live your life, please- you only have one so enjoy it. The fear these quacks create is not healthy. 

Cutting boards are actually one of the biggies if you had gluten foods on them. The scratches can retain gluten containing food particles, and not easily cleaned out, Scratched pots that were used for something like pasta are going to be a CC issue for while and scratched teflon...yeah that will. Solid piece utensils can be cleaned, stainless steel pots in many cases can if not scratched. But as mentioned some things do not clean out well at all like the pasta colander. I am hyper sensitive and my reactions well, literally scare me. So I go the extra mile. Many of us have found CC to be a ongoing issue with older pots, and pans hince why I brought this up. Many just get new ones and play it safe. The condiments and clean out is due to crumb transfers from a knife/spoon/fork being used on gluten bread then transferring crumbs to the jar. Spices, some blends and companies use gluten flours in them or are prone to CC. As mentioned by Kareng you have the crumbs in the drawers that need to be cleaned out (many just vacuum it out and get a new utensil organizer to hold the clean utensils) , the oven,  and the toaster meets the trashcan as a lost cause. Cleaning all your surfaces, handles, knobs etc really well. And I found freezer paper to make a good clean safe prep surface for food, also makes cleaning up super easy as you just dump the crumbs off or toss it. Foil line your bake-ware, and crockpot liners can also save with CC and cleanup, consider it a dual investment.  Again read the 101

In many ways it is a "Decon" in a way of speaking, not saying call the hazmat team.

[Victoria1234 98]

When I went gluten-free, we didn't get new cookware. I was super sensitive and luckily was fine. I reacted to small amounts of gluten in food. Even processed gluten-free food. But my husbands dishwashing routine was good enough to clean what we cooked on and ate with.  We did not get a new toaster as I hate toast anyway, lol. 

 

[Jmg 299]

6 hours ago, DaveCH said:

 Is the cancer thing something to be worried about or is that after a very long time of not being diagnosed later in life, I haven't had a chance to speak to my gastro about this.

Hi Dave and welcome

Clearly a question your consultant will be happy to answer but all the studies I've seen suggest that if you adhere to the diet your chances of serious complications quickly track back to the national average. So after a certain time gluten free you will be no more likely to get such complications than a non celiac.

It is important however to get a handle on the diet. The other study I saw which made an impression was the risks ran by celiacs who slipped up regularly, say once a month. There stats tracked the other way, although it's important to remember even then that cancer is still rare.

I'm also in the UK by the way.  I think you made a good decision going private. There's a Brit topic in the international room if you want to share notes on what or where to eat.

all the best,

matt