My son, 30, has been given a borderline coeliac diagnosis so far based on bloods and biopsies and has to wait until September for first post biopsy specialist appointment. He has been gluten free for about 4 weeks and sleeping better back pain sorted, bowel movements reduced to once a day etc etc. BUT this last week has relapsed again and can't identify why. Any ideas welcome. Diet is much more veg based to fill him up. He is off on a family trip to Canada in 5 weeks and needs to be as well as he can! - (as well as for work etc :-))
Thanks in advance
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sarahstevenson
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In the early days its quite easy for cross contamination to be a problem. Things improve at first, but your body demands more and more strict avoidance as it gets used to a non gluten way of life and sadly this gets more extreme. You become more sensitive.
You have to be really strict with everyone else in the household that they don't infringe on your dedicated GF workspace, don't dip their knife in your butter and jam, don't use your personal toaster, pans, rolling pin, chopping board etc etc. Its also very easy to pick up bits of food and pop them in your mouth without thinking.
Also many people develop a lactose intolerance which lasts a few months but is not for ever.
Very Many Thanks BBarb! mmmm lots to learn - luckily ??? he lives by himself at the moment but did come home last weekend - maybe we weren't as Gfree as we'd hoped! Also I thought I had read something about being mindful of lactose but wasn't sure why or if it was pertinent to him - your response so much more helpful than the NHS much appreciated!
Bbarb is very right in what she says. You have to read ALL food labels to ensure that sneaky gluten isn't getting into the diet. I spoke to someone recently who thought Kelloggs cereals were gluten-free. Things like that are an easy mistake for a GF beginner to make (btw, I believe they contain barley).
Do suggest that he stays away from anything that says 'may contain traces of gluten'.
That's sort of the easier bit!
You also have to be aware that he cannot eat at the majority of fish and chip shops any more (and be generally doubly more careful when eating out - almost to the point of giving serving staff the Spanish Inquisition...!).
That you need your own butter pot etc.
That he mustn't share the toaster with you any more, unless he's using a toaster bag - I suspect most GF folks go out and buy a new toaster (I know I did!)
He should also have his own dedicated GF colander, sieves and wooden spoons - the dietician told me this one.
If necessary, remember that a breadmaker could be a source of risk and is a bad idea to use for both GF and non-GF breads; the same goes for a pasta maker.
Finally, thoroughly cleaning out the relevant kitchen cupboards to reduce the contamination risk (from sources such as flour dust) is probably a good idea.
Unfortunately other food intolerances are quite common. Once he is certain that gluten is out of his diet, then these might become more obvious as a problem. That was certainly the case for me. A dairy intolerance one of many different possibilities - and figuring if this is so, is largely down to trial and error.
Best of luck, I hope he is able to get to the bottom of his problems.
Many thanks Regal Birdy will pass this on - I think we are getting better understanding but are concerned the NHS hospital wait seems to be ambiguous anything from 5 - 18 weeks they keep muddling his appointment. He was referred internally from Endocrinology to Gastro and this seems to have thrown their system - of there is one. Had we known we would have booked privately at the start worth using savings for! Will add toaster bags to his Canada list
Has your son not yet had a gastroscopy (camera down the throat)? If not, he'll need to be eating gluten every day for 6 weeks previous to the biopsy or he risks getting a false negative result. When you add this to his trip to Canada, where he'll have no problems with a gluten free diet as long as he sticks to meat and veg and doesn't eat any bread/cakes etc, he's going to find it tough.
Tell him beer is made from barley(!) but he can drink cider or wine and spirits, and try to get him to read the labels on pre-prepared meals (fish fingers, burgers .....chocolate). Good news is that MacDonald's burgers are OK but ask for one without the roll/bun. The Coeliac Society UK is very helpful and membership used to be free for the first year, so is the site The Coeliac, DH and gluten free message board.
GPs aren't very clued up on the coeliac problem, but they're getting better - and supermarkets stock a great range of foods in their Free From sections. M&S is brilliant.
Hi BBarb no it's OK he has been told to go gluten free by GP after his gatroscopy back at the beginning of April. Turns out Canadian family have cousins on other side who are coeliac diagnosed which should help when he's with family so only half the holiday to negotiate! He doesn't drink alcohol anyway as it makes him feel so ill - so ginger ale it is. Coeliac UK as you say have been great and we sha;; be joining :-). Thank you for checking
If he's shy of asking in cafes and resturants for gluten free, try here for a printed explanation card he can hand over to staff, celiactravel.com/cards
Ah ha another perfect fit piece of the puzzle - thank you denvajade - son was really intolerant of potatoes through his teens resulting in awful acne etc - we thought it was the deadly nightshade link but may be the starch thank you!!
Hi, I'm from Canada and there are lots of GF options here, so not to worry about that. You may want to check fir gluten cross reactors - non-gluten foods that your body treats like gluten. There's a list here - thepaleomom.com/2013/03/glu...
The first thing to do is to try and identify the problem by elimination. First avoid all wheat, rye, barley & oats and derivatives until you feel as you think you should. Then introduce items on the GF diet to see how you react. Four weeks of gluten free? the diet may contain up to 20ppm of gluten and four weeks is not long enough for the gut to heal....six months onwards depending upon damage according to CUK. my personal experience is go by ingredients not the GF logo
Hi Jacks thanks for concern - you made him smile, in a nice way , with 3 other diagnoses in process in the family and with me being the only one in temp rather than full time work I have been delegated as question poser We have others on recipe recommending etc. He has been doing his own ironing since age 12 and is free of apron strings unless brewing his own beer - gfree nettle of course tee hee
Hey what a lovely Mummy you are I'm gluten/wheat and Dairy intolerant and suffer with cronic Ibs so food is a nightmare and have become quite a expert in trying loads of ones to find the nicest lol! I find Waitrose bread is the only one I like that tastes like normal bread and I'm somewhat addicted to there Oreo style biscuits and millionaires shortbread slices. Tesco and Morrisons have quite a good range with Tesco doing amazing jam tarts/bake well tarts and lemon slices Morrisons chocolate bars are fab as is there rocky road slices and treacle tarts. But Sainsburys do really great rolls/muffins and do a great range at Christmas and Easter of gifts I find I shop in all of them and stock up while I'm there so not to be going round loads of shops each week! Are you in the UK? As. They do a fab free from show in London on July 4,5,6 (they do it each year) and it's huge with talks,tasters,things to buy which I find so helpful xx
Thanks Debs so much for this, Will let my London based niece know about the show as she too is diagnosed and trying to follow the diet from this year - mmmm jam tarts his favourite will pass on Enjoying choc brownies and banana tea loaf home made xx
I agree with all the above, but also sometimes what can happen in the early days of being gluten free is that for no reason you get symptoms - it seems to be just a recurrence like a step back, presumably because the gluten (or maybe antibodies) are not yet fully out of the system. So what this means is that it could have happened for no reason! but then its a good opportunity to check for cross contamination.
For travelling my tip is to take toaster bags and take them to breakfast - often hotels will have the bread but not the separate toaster!
by the way 30 or 75 he's still your child and this is your way of helping him - I would do the same, they often dont bother and especially when they're working dont have the time - you're a good mum, well done!
Hi Gill many thanks - toaster bags on his shopping list and we've given in (or up) with NHS so he's paying to see the specialist next week - decided Spetember too long to wait after 30 years waiting already bah humbug XX
Thank you ALL for posting - He decided it would be worth paying for a private Gastro appt (his own finance, in case anyone wondering tee hee ) and saw the consultant on Friday. Helpful openminded Doctor Gastro specialist, in Bath area in case anyone wants me to pm them the contact - surmises bloods show borderline coeliac, biopsies show truncated villi etc so narrows diagnosis to Bacteria or Crohns or Coeliac, then supported by bacteria free tests , and with son's experiences before and after gfree, family history and physio letters now clinically advised it is Coeliac he needs to manage. Consultant sending letters to GP for dietician advice and for bone density checks ( son has lordosis and kyphosis of the spine, which need ongoing treatment). THANKS for your help along the way
Glad to hear that he is making progress and getting sorted out.
Tell him he's welcome here any time, if he wants to join in with any of the conversations. The forum was set up for anyone, no matter how long they have been gluten-free.
Many thanks Regalbirdy, I have joined Coeliac UK with a household member ship to support 2 nieces both my side and husband's side of the family and also find my hypothyroid Hashimoto's is much reduced on the GFree diet to the extent I am on a third less medication . Think we're on the right track at last.
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off to hoover the toaster !?!?
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