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Go back on gluten for endoscopy and colonscopy?

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Posted 6/13/2013 8:01 AM (GMT 0)
Hi everyone,

The doctors originally thought that I had IBS so they put me on a low-FODMAP diet and told me to stress less. I found that the low-FODMAP diet was working, and I could slip up on the rules for everything except fructans (wheat and rye). I also found that if I tried some alternative grains (barley and oats, etc.) that I got really bad symptoms! I started to suspect gluten intolerance, so I have gone completely gluten-free and low-FODMAP for the last month. I found that I got withdrawal symptoms and cravings for wheat, and some of my symptoms got better and others got worse. I documented the changes in my symptoms throughout the month and took the list to the doctor. He read through it and said he would like to order an endoscopy and colonscopy. He didn't say anything about eating gluten again yet, though.

He said that I would have to wait 3-6 months to be tested since I can't afford to pay for it myself, so I'll have to wait longer in order for Medicare (the government's health branch) to pay for the procedures. I know that for the last month before the tests, I should eat gluten again. I'm concerned that if I've been off of gluten for several months before then, that the test results may come back falsely negative. Should I start going back on gluten in one week's time? I say in one week's time because for the next week I have final exams for semester one and I'm certainly not going back on gluten right now. But if I go back to eating it during the 6-week semester break, wouldn't that give my body time to adjust somewhat so that I'll still be able to get through semester 2 alright? It's likely that I'll be having the tests mid- to late-semester two of this year.

I just remember breaking the diet once after doing it for 2 weeks - I had a small dumpling (the person tricked me into thinking it was made with rice pastry, but after I'd eaten it and commented on the texture, she admitted it was wheat!). Anyway, it made me so sick for the next week that I just haven't eaten gluten since then. I don't want to eat it again! But getting a diagnosis is the only way the doctor will take me seriously!

So, should I start having gluten during the break? Should I just wait until one month before the tests?

Posted 6/13/2013 10:17 PM (GMT 0)
Yes, I'd start gluten as soon as your exams are done if you want the gold-standard biopsy diagnosis for Celiac.

Consider an alternative, however: EnteroLab.com can test you up to a year after going gluten-free and still may find evidence of gluten intolerance.

You can also get tested for the genes involved with Celiac Disease, which is not affected by your current diet (the genes don't change with your diet), but all this would tell you is if it is possible for you to have Celiac Disease and would not tell you if you in fact for sure do have Celiac.

And the least expensive option is just to continue the gluten-free diet for another 3 months, then re-challenge gluten (i.e., eat something with gluten in it) and see what happens. But I think you have some idea already that gluten may be a problem, so if it were me, I'd stay gluten-free and not look back...
Posted 6/14/2013 5:31 AM (GMT 0)
Hi Razzle,

Thanks for replying.

EnteroLab looks good, but I live in Australia and can't afford it.

The doctor also suspects some type of inflammatory bowel disease may be going on as well, so I'm going to have the procedures done in any case. Plus Medicare will completely cover the cost.

After my exams, I'll try some gluten for a week or so (I'll get those pastries I've been dreaming about)... if it gives me hell then I just won't continue eating it anymore. They can just look for IBD if that is the case.

Thanks again,
Jasmine
Posted 6/25/2013 1:58 PM (GMT 0)
Hi,

This question is always a tough one. Why start eating Gluten again when I know it makes me ill??

My doctor after confirming my Celiac Disease via a blood test told me to stop eating Gluten and then proceeded to book me a gastroscopy. So of course I turned up at the gastroscopy without eating Gluten for three months. It was only when the nurse asked if I was still eating Gluten that I realised my doctor gave me the wrong advice. The gastroscopy test came back negative as I had no anti-bodies fighting the Gluten because I had not eaten any Gluten for three months. This did not bother me, I knew I had Celiac Disease and know when I eat a Gluten Free Diet I'm good. Many Gluten eating mistakes since have confirmed that I do have Celiac Disease. cry

So in answer to your question......If eating Gluten makes you ill and you don't care that the test may come back negative. Don't eat Gluten. But do go for the gastroscopy whatever you decide as you never know and it's better to let the doctor have a look round.

 

Posted 6/26/2013 1:39 AM (GMT 0)
Thanks Coeliacblog. I tried eating gluten and ended up in the hospital with what the ER doctor thinks was acute celiac crisis. I haven't eaten gluten since then.

Yes, I'm still going to have the endoscopy and colonscopy in case I have an IBD. And if I manage to get in soon enough, it may even be able to show whether I'm celiac or not. But no more gluten for me!
Posted 7/25/2013 3:48 PM (GMT 0)
Perhaps the doctor can give you some guidance on whether or not you should start the gluten up again before the test? I had a similar situation....

I was finally diagnosed with Celiac about a month ago. My doctor was going to send me to a bigger city hospital because she couldn't figure me out but wanted to do blood work and an endoscopy before she did. Lo and behold, the blood work came back positive for Celiac. While I did have some Celiac symptoms, I did not have a lot of the obvious ones so she never really went "there" with it so she had not tested for that up until then. I know I should've asked but I also didn't suspect that I really could be Celiac!

Anyway, I had started to play around with gluten free prior to the blood work just to see if it would help my symptoms. It wasn't long enough, the doctor felt, to affect the blood work and apparently she was right since it did come back positive. She wants to still do the endoscopy. However, we couldn't get it scheduled until a day that would have me being gluten free the better part of 3 months between me starting it on my own and having to do it with the Celiac diagnosis.

I called and inquired about this. Wasn't sure if she wanted me to start gluten again prior to the endoscopy or if she even still wanted to do it. Turns out she still wants to do the endoscopy with me being gluten free and does not want me to start it back up at all.

I almost feel silly going in for it but I have made her aware that I've been gluten free. I suppose that it will at least give her a look around and the biopsies can show if there's any remaining damage...maybe?!?

Good luck to you!
Posted 7/25/2013 3:51 PM (GMT 0)
Just saw your later reply, Jasmine...hope things are moving along with your illness and you are making progress with a diagnosis. Again, good luck to you!
Posted 2/13/2014 4:59 PM (GMT 0)
Hey Jasmine,
I'm a Melbourne based silly-yak....very very new to this whole thing. Was wondering if you were from Melbourne too?
Posted 4/4/2014 2:30 AM (GMT 0)
Sup jasmine, I'm currently going through the same battle, and I've already had the colonoscopy and endoscopy done with little results. I would not touch gluten one bit! I made that mistake when I thought it could be milk and I'm still paying for it months later.

As for having to gluten yourself for it, listen to this. Doctor does my endoscopy, stomach looks irritated up top which he says cold be from my ppis, as no hpylori discovered. With his own two eyes the doctor sees my duodenum looks flat and not normal, takes out a sample saying to analyze suspicion for celiac or crohns. Biopsy comes back saying NO irregularities found.

My doctor is still very concerned about my duodenum even with his own biopsy report coming back completely normal. I'm currently eating on a comprehensive celiac panel since my symptoms have generally been the same (although for the months I've been gluten free my sleep and energy have been coming back! That's a minor victory...)
Posted 4/4/2014 10:49 AM (GMT 0)
Hi guys,

I didn't go on gluten before the endoscopy. The endoscopy and colonoscopy were both "normal" - remembering that I had been completely gluten free for 7 months beforehand (except for the one episode where I went to hospital 5 months before). So after I got the clear results, I tried gluten again. It was hell. I went off it again.

So over the summer I tried to stay away from gluten... But there was a lady who kept on feeding me food with traces of gluten whenever I went to her place (which was one to three times a week) and I kept on feeling sick! I now know what she was doing.... She said she was doing this because she thinks all my symptoms are related to anxiety and depression and that consuming gluten wouldn't make a bit of difference to my health.

Well, once I knew this I thought - hey! Now would be a good time to be tested for Celiac because I've been having traces of it for 3 months now. The doctor ordered a blood test for TTG, IgA antibodies, total IgA, IgB antibodies and ANA. It showed that I am IgA deficient, Celiac and slightly autoimmune (ANA 1:160).

Upon receiving these results, I immediately went completely gluten free for a few weeks. (By the way, I only take my own food to that lady's place now.) Upon retesting, my ANA levels are negative (normal), and my IgA levels and TTG levels are all good again! I am definitely staying gluten free :) Oh, and did I mention that I feel million times better now!!! Gone are the migraines, neuropathic pain, nausea, stomach cramps, alternating constipation and diarrhea... The following symptoms are lessened: joint aches, muscle pain, headaches, insomnia, anxiety, depression, deep exhaustion, irritability, ridiculously heavy constant period has now subsided...!! And more... Can't remember them all... Oh, yeah! My mental capacity and short-term memory have improved :)

Not having gluten is the best thing ever for someone with Celiac! It's worth all the extra preparation and money and cravings...

That lady still wants to feed me gluten because "you can't diagnose Celiac disease with a blood test... You need an endoscopy and sigmoidoscopy." Well, maybe so - but I would have to wait 6 months on a waiting list like I had to last time, AND eat large amounts of gluten that whole time to make sure any damage showed up in my intestines. Sorry, but eating gluten is DEBILITATING for me, and it's just far too painful. Not worth it. I'd rather bear her derision, scorn and disbelief than the horrible symptoms that happen when I eat gluten...

As far as my two doctors are concerned (I have a GP and a LLMD), I definitely have Celiac. I was positive for TTG while on a diet with very low gluten consumption (except for the one wheat wrap I had 2 days before the test, which had quite a bit of gluten) and 97% of people with a positive TTG are Celiac as shown by biopsy. So yeah, going by that, there's a 3% chance I'm not Celiac. But there is other evidence. I've had my ANA tested every year for the last few years, and it's always been positive. But after being gluten free, it's negative!! And Celiac is an autoimmune disorder. I've had anemia 7 times in the last 3 years... But not since being gluten free. But the biggest thing for me is that I get the symptoms of gluten intolerance when I eat gluten, and these symptoms subside when I don't eat gluten.

Post Edited (Jasmine Grace) : 4/4/2014 6:05:58 AM (GMT-6)

Posted 4/4/2014 12:13 PM (GMT 0)
Hellodarling, I'm in Western Australia :)

Ezgoindude, I think it's a good idea to be eating on the Celiac panel. Very interesting about your duodenum... I'd definitely keep an eye on that and maybe even get several more biopsies done from the area and get some other experts to analyse them... If that's possible...

Hi buffalove, Thanks for the well wishes :) how did your biopsies go?
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