10 days in and I'm doing okay. Things aren't as bad as they could have been digestive wise. In the first few days, I got constipated/bloated and my geographic tongue reappeared, but yesterday it all started to settle down, which is a little puzzling although not unwelcome.
My bigger problem is getting gluten into my diet. I don't want to have an endoscopy if I haven't been eating enough gluten to make the difference. That would be pretty pointless. I still think this "see how sick you can make yourself before you get diagnosed" is pretty neaderthal, but since I've decided to go ahead with this, I may as well do it properly.
We went away for a few days between Christmas and the New Year, and people offered me plenty of stuff with gluten in, but now I'm back home and it's much harder. I have pretty much banished all gluten products from the house. I've eaten all the mince pies, which were my main source of gluten and the Christmas cake that my mum made me is GF anyway.
I suppose I should go out and buy a loaf of bread, but old habits die really hard...
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poing
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You shouldn't change your diet at all before the endoscopy, otherwise the results aren't 'true'. Believe me, it is not worth going through an endoscopy if you are not going to get true results
I've been gluten free for 18 months already, so I have to eat gluten again for the endoscopy. I self-diagnosed an intolerance from an elimination diet, and cut most but probably not 100 percent of gluten out of my diet. Unfortunately, eliminating gluten plus a year's worth of iron supplements doesn't seem to have fixed me up completely, so here I am.
Has you doctor taken blood test to see why you are still low in iron? I have blood tests every three months to monitor my calcium, d3 and b12 levels. It not easy going gluten free......it's not a life choice.....it's a health one.....as if as u say u are not totally gluten free then the damage to your gut will show......hope all goes well for u
Initially I had trouble convincing the doctor that my iron levels were a problem... but when I took a liquid iron supplement, I suddently felt better in a most dramatic fashion. I did eventually get their attention when my ferritin finally hit 12. Still don't know where to go with that one as my ferrtin bears no relation to how I'm feeling, but is always bouncing around at the bottom of the range.
If you do have coeliac disease - or any kind of intolerance to gluten - cutting out 'most' gluten will not be enough to make you well. However hard it seems, you will need to remove gluten 100 per cent from your diet. Even then, you may not see an immediate improvement. It typically takes between three months and two years for the body to fully recover once gluten is no longer being consumed - although most people start to feel better rather more quickly than that.
With regard to your gluten challenge, if you are not consuming adequate amounts of gluten, your test results are likely to come back negative. During an endoscopy biopsy, a small piece is taken from the wall of the small intestine so that the villi (the tiny, finger-like projections that line the wall) can be examined. A typical indication of coeliac disease is damaged, or flattened villi, but these start to recover quickly when gluten is removed from the diet.
Most gasteroenterologists recommend gluten should be consumed daily for at least three months before a biopsy is carried out, at a suggested amount of four slices of bread per day. Many people who know they are sensitive to gluten are not prepared to suffer for a further three months, ingesting a substance that they know to be harmful to them. Others just want a 'definite' diagnosis and are committed to doing whatever it takes.
Whatever you choose to do, be aware that you may not get the result that you want. However, if you do decide to go ahead with the endoscopy, then you will need to ingest a lot of gluten to maximise your chances of getting an accurate result.
I hope it all goes well for you and wish you the best of luck.
I cut out gluten more and more, as I learned about the places where it might turn up. To begin with I was caught out by chips - thought it was a safe option when eating out and then discovered that most have a batter coating. The latest one was Baileys - it's made from whisky and whisky is made from grain of course. I learned about that from this forum. It doesn't feature in my diet much, but I did have a glass a few months ago.
Basically I was at the level where I had cut out all known gluten containing ingredients, but not all potential sources of cross contamination. My family still eat bread and breadcrumbs get absolutely flippin everywhere (grr) even though I now keep separate butter and chopping board for them. I also continued to eat oats, and stuff that could be cross contaminated from the fields or the factory.
I had a negative TTG test 18 months ago, so I didn't think I needed to be as strict I would need to be for full blown coeliac. Now I am wondering if I just caught the disease in the early stages. I have high AGA in my stool, which could be the beginning of the process. There is some research suggesting that the different antibodies show up at different stages of gut damage with TTG only showing up for the most serious degree of gut damage, but I don't think they really know how things progress.
I got glutened in mid-September while on a work trip. Having ordered a meal of steak and salad - the first proper food in two days - it came with a sauce that didn't look GF. It was eat gluten or starve at that point, so I scraped the sauce from the steak and ate it anyway. I didn't seem to get over that for quite a while, so I wondered if I had become more sensitive than before.
So basically I am now at the point where the only way to make things more GF would be to banish the few remaining wheat products from the house, so that even my family couldn't eat them, as well as anything with the potential for cross contamination. That seems like a big step to take, one that it's hard to take without proof that I need to do it, as it would affect everyone around me.
I had been GF for 18 months too, just did challenge, had scope 21st Dec, finding it really hard getting back into a GF and dairy free diet . .
Just go for it, eat as much as you can! I pigged out on cakes, biscuits, sandwiches, toast etc for 6 weeks prior to scope. Felt awful to begin with, think my body was in shock! Messed with your head a bit too as you will have spent months avoiding these foods and when you feel yuk it's hard to keep shovelling it in!
Hi Poing, Just wanted to wish you good luck with your challenge, which I can imagine is pretty difficult. I suffer from similar symptoms as you when I eat gluten (with the added fun of itchy rashes and slowed metabolism). The specialist told me I'd have to consume 2-4 slices of bread a day, similar to CoeliacVegan's advice, but I couldn't face putting myself through it.
Pre- going gluten free, I found a daily probiotic, cider apple vinegar with quarter teaspoon of bicarb of soda and vitamin C taken at regular intervals helped calm my digestion; for constipation senna pods can work wonders, especially alongside drinking lots of water.
Just a suggestion regards the cross contamination for when you go gluten free again. I got ill from eating Morrisons quinoa (found evidence of wheat in there after the event!) and separately, from using malt vinegar, so it can really affect you. I bought a portable halogen oven for £40 (a smaller one is even cheaper) and you can cook loads of things in there (even great gluten-free toast) without risking contamination if you restrict it to your use only. Genius bread makes excellent breadcrumbs when grated once slightly stale, so you could still enjoy them, once your gluten-diet is finished. Best wishes.
Sorry to hear you're struggling with eating gluten at the moment. As soon as I knew I might have a problem with gluten I really went off it and had to force myself to keep eating it until the biopsy was done. The gastro told me that one slice of bread a day should be enough and I topped that up with really nice gluten containing breakfast cereal, cadburys mini rolls and jaffa cakes. Good Luck.
I cut wheat out myself before blood test or biosopy and then had to start eatting it again much to my dread but i just starting eatting 2 wheatabix aday to get it into my body as quickly as i could and at least i only had to eat it once, I got a postive blood result even though i had only been eatting them for 2wks, then got a quick appointment for biopsy and straight after the biopsy was done never had any wheat. I only found out about 8wks ago and i don,t know if i,m just lucky but have found it really easy to cope. I must admit i look on the reduced bread part at tesco,s and i can get GF bread for less than 30p most times plus garlic nans and sometimes cakes but i,ve never been a big cake and biscuit eatter and all the above freeze well so keep your eyes open and good luck
Moan time again. I didn't want to start a new post just for that.
For the last few days I can't get to sleep, the outside of my throat feels odd, my neck and a few other muscles are sore and my temperature control has gone haywire (either too cold or too hot). Either I'm fighting a virus or this is a direct effect of the gluten. I feel really down. I haven't felt this low since before I went GF in May 2011. Thinking about it, I didn't have a cold or virus in the whole time I was GF.
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Best wishes.
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