To the Bees that lead a GF lifestyle..WWYD?

posted 2 years ago in Wellness
Post # 2
4136 posts
Honey bee
  • Wedding: August 2013

I did the same thing. I had a blood test to see if I had the gene for celiacs and had a scope. It’s important to know if you have true celiac or not because the disease increasea your risk of cancer later. You would need colon screening earlier in life. 

Post # 3
68 posts
Worker bee

From my experience, the first few days back on gluten are the worst. After a couple of weeks your body sort of gets used to the discomfort, so you might be able to keep it up until the appointments! It would be good to know once and for all whether you are ceiliac.

Post # 4
5533 posts
Bee Keeper
  • Wedding: December 2011

It is important to find out for sure. BIL had massive issues with gluten and stopped eating it, had the test and got negative for celiac (because he was self limiting) and so assumed it was just all the stress (which he had been at ridiculous stress levels so it wasn’t unreasonable) and started eating it again. And ended up in the hospital because instead of just celiac he had an allergy and had an anaphylaxis reaction from the repeat exposure. While it is miserable, there are reasons to get a full diagnosis one way or another.

Post # 5
10453 posts
Sugar Beekeeper
  • Wedding: January 2011

Since there are other issues that can be causing the problem, I think I would want to know.

If you’re feeling that horrible, double check and see if you need to actually go for the full 6 weeks.  The schedule might be able to be adjusted somewhat.

Post # 6
223 posts
Helper bee
  • Wedding: May 2014

I had the exact same situation as you; including the really bad gas at night. Eating anything with gluten just ruined my day and made me uncomfortable at night. The doctor told me the same. He first said to stay gluten free for a couple of months and then try something with gluten. If my symptoms are worst than before, most likely I have a problem with gluten. I should go in for the blood work too though. The foods that get me the worse after just one bite or drink is bread and beer. It’s hard to be gluten free over a day, so like you I’m weening off it little by little. 

  • This reply was modified 2 years, 1 month ago by  newbeelove.
Post # 7
382 posts
Helper bee
  • Wedding: November 2015

OmbreBee:  Here’s the thing about the blood test and endoscopies/biopsy tests they don’t tell you – they are still not even remotely close to being ACCURATE or RELIABLE 100% of the time (or even 70% of the time!) I’ve been through every test possible (I stopped short of a colonoscopy because I was 23 and I had enough pain inflicted on me from a doctor for ths last 5 years). 

So in my opinion- stop the pain. You know you feel better without gluten so choose to live that way 100% of the time (95% doesn’t count because it takes your body 2-4 weeks to rid your body of gluten after ingestion). 

I highly suggest reading the book “Wheat Belly” – it is chalked full of so much information my doctor couldn’t even explain to me! The book even goes through a detox program from gluten!

Since going GF I find GF Expos are extremely informational to go to and hear leading doctors in this field speak about new research and current testing. I even took my mom last year and she has been extemely supportive and understands celiac/gluten intolerance way better now.  

Please let me know if you have any questions! Good luck!!

Post # 8
1130 posts
Bumble bee
  • Wedding: May 2014

OmbreBee:  You poor thing, whether it’s celiacs or a gluten intolerance, it really does suck.

I’m surprised you’ve been told 6 weeks. I was in a similar position myself and was told I’d need to eat gluten for two weeks if I wanted to have a colonoscopy to investigate. I didn’t, in the end, simply because I was fairly intensely certain it was just an intolerance. I was also told I’d need to eat the equivalent of about two slices of bread a day.

Did you get any specifics about how much you’d need to eat? If you’re in that much discomfort, it may be worth contacting your doctor again and checking the specific details (such as whether you can decrease the total time period or amount you are eating). I also agree with PPs that starting up again is the worst part – you’ll build up more resistance again as you keep going, but you have to figure out what is best/right for you.

I’m not sure where in the world you are, but here in New Zealand, a particular advantage of having the tests and getting an official diagnosis is that you are then eligible for certain gluten free products (including cake mixes!!) on prescription, which is a big budget helper. 

Good luck!!

Post # 9
279 posts
Helper bee

You could get the blood test for the coeliac gene – if you don’t have the gene, you cannot be coeliac.  If you do have the gene, you may become coeliac.  If you have the coeliac gene, it’s best to stick out the 6 weeks and have the gastroscopy where they take tissue samples of your small intestine.  This is the gold standard of coeliac testing.  

With coeliac disease, your immune system attacks the lining of your small intestine, damaging it and potentially resulting in malabsorption (as well as making you feel awful).  Coeliac disease also increases the risk of GI cancer.  Coeliacs need to be strictly GF for life as as little as 1/100th of a piece of bread can cause damage and damage can take up to 6 months to heal.  People who are gluten intolerant do no damage to their intestines and only need to be GF for comfort.

So after that long-winded reply, I think it’s important that you find out for sure if you have coeliac disease or not.

Post # 10
1 posts
  • Wedding: December 1969

I have coeliac disease, and I also work in pathology-so part of my job is assisting with the diagnosis of coeliac in others. Your question actually prompted me to come out of lurking actually!*

I found out after an endoscopy confirmed a positive blood test at the end of 2012. For years I had struggled with anaemia, vitamin D defciency, chronic reflux that couldn’t be controlled with medicaton and constipation with occasional diarrhoea. I never suspected it was caused by gluten. Honestly, I was pretty upset when I found out, especially because it had taken 5 years to get a solid diagnosis. More upsetting was the bone scan I had 2 weeks later that showed my bone density wasn’t very good at all-I had osteopenia, which is a loss of bone density and a precusor to osteoporosis. When your small bowel lining has been damaged to such an extent, it can no longer absorb many essential nutrients, including vitamin D and calcium.

So why did I tell you my story? 

If I had figured out it was gluten on my own, and cut it out without getting a diagnosis, I would never have had a bone scan. I would never have started on a monitoring program, or vitamin D/Calcium. I’m fortunate enough to have found out at a young age, when I still have time to lay bone down. My next scan is in Jan 2015, and while I hope so badly that my bones are of normal density, if they are not, at least I can take actions to reduce the risk of osteoporosis. 

Secondly, my close family can now found out if they have coeliac disease. This is encouraged among first relatives of a person with coeliac. My sister has come back negative, but seems to have some sort of gluten sensitvity and is now experimenting with a FODMAP diet. My dad is negative. My brother and mum are taking their sweet time, but thats another story.

Thirdly, coeliac disease puts you at an increased chance of other diseases. Cancer is often mentioned, however other autoimmune diseases are also more likely in people with coeliac. Lupus, thyroid diseases, diabetes type 1 and others are just some examples I can think of right now. Now that doctors know that I have coeliac, they are much faster with tests and things to make sure I haven’t developed another autoimmune disorder.

Gluten free has a lot of hype, mythology and most of all, misunderstanding surrounding it. Coeliac disease is very similar to gluten intolerance (both make you feel awful and pretty much the same “cure”), but only coeliac disease can have serious side effects.  While you intend to eat GF forever, regardless of any diagnosis, a diagnosis will allow you to have any further tests which may be required. I would suggest Googling the local coeliac organisation in your area for the best info regarding the disease, and help you form an informed decision that’s best for you. 

Good luck with it all, and I wish you all the best, whatever you choose to do!


*apologies for my essay


Post # 11
264 posts
Helper bee
  • Wedding: September 2015

OmbreBee:  you doctor should have other ways to test for this besides the blood test, which tests if gluten has gotten into your bloodstream BC of damage to your intestines, so essentially that’s what you’ll be doing for the next six weeks. There are gene tests as well as an endoscope test. Maybe consult another doctor? Eating Gluten when you are celiac can lead to some pretty bad issues, even cancer. I wouldn’t eat it just because the Dr. is being what sounds like lazy. Get a second opinion and ask for a scope referal. But you definitely do want the diagnosis. Here in Canada, if you are properly diagnosed, you can claim part of your grocery bill on your taxes since it is classified as a disease that needs special accommodations.

Post # 12
1116 posts
Bumble bee

OmbreBee:  I didn’t have the tests. I am only wheat intolerant so wouldn’t have come back positive anyway but lets face it… you eat gluten you feel crap, you don’t eat gluten you feel better.. Test done why bother making yourself ill to find out the same thing

Post # 13
23 posts


I am a dietitian, I see patients with CD often- you are spot on.

It is important to know if it is coeliac disease or not. Best current practice for this is via a biopsy. Coeliac can cause all sorts of issues and be linked with many other diseases as pointed out by botanix and more (ie; can be linked to fertility issues/ miscarriages due to nutrient deficiencies) CD is a totally different situation than wheat or gluten intolerance. So I would very much reccomend following your doctors advice with this one – even though the short term effect is pretty sucky.  Good luck! 

Post # 15
55 posts
Worker bee
  • Wedding: September 2011

FutureMrs.Huemiller:  Doing a endoscopy if she has been on a gluten-free diet is also useless, same as bloodwork if one has been gluten-free. Those tests are only useful if one is on a gluten-containing diet. The genetic test only tells you your risk of developing celiac. It does not tell you if you have it. You can be in the highest risk percentile and not have celiac. Her doctor is not being lazy, they gave her appropriate reccomendations. 

OmbreBee: I agree with talking with your GI again about this. Hopefully you can come up with a plan together to get you feeling better. I agree with the above posters about the benefits of actually finding out if you have it rather than just treating it. 

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