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Some Doctors Are Enlightened

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I saw another doctor today, I'd been waiting for an appointment for ages, ever since I saw her listed as someone with a particular interest in celiac (she's a GP so I didn't need a referral).

I told her about my insulin resistance/PCOS because it was the diagnosis that really got me noticing my issues with gluten. When I mentioned gluten she said that given my last name (very irish), she'd assume that I was celiac until proven otherwise! I wasn't expecting to focus on the insulin resistance because that's diagnosed and I have a specialist, it was more that ever since I got that diagnosis last year I've been trying to tweak my diet because I was told that eating lower carb was the best way for someone with insulin resistance to lose weight. One of the ways I tried was cutting out all grains and only eating meat, vegies, fruit, nuts and a little bit of dairy - and it made me feel wonderful. But I got busy and slipped up and that's when I started getting the crazy bad stomach aches each time I ate wheat which made me research further and I put myself on a gluten challenge to get properly tested. And the last 3 months of it have been horrible - headaches, bloating, heartburn, etc etc. Blood tests done by my GP at 5 weeks were negative, but I kept on it until I had my appointment today.

Anyway, she read my results and asked where the total IgA test was. Hadn't been done (as I'd suspected). So she said they weren't valid and she's getting them re-done AND the gene test. I was pretty happy about that. She doesn't think I have celiac, but said it didn't mean I wasn't gluten sensitive. But either way, given that I already have insulin resistance which is a sign that my body isn't coping with the way I eat, she wants me to give up all grains altogether, and dairy too. She feels that if everyone ate a paleo-style diet then most chronic medical problems would be eliminated, but no one really wants to hear that. She said the treatment I'm getting for the insulin resistance is fine for treating the symptoms, but it doesn't treat the cause. But she understands why it's what my specialist advises because no one wants to hear that they have to give up the staples of our western diet.

I feel kind of stunned. I'm not used to doctors making the cause and effect of food on how we feel so explicitly! I went in there hoping she'd tell me I had to be gluten free because I needed a diagnosis to keep me on the straight and narrow, but not really expecting to hear it unless I tested officially celiac. I do believe that what she's suggested is the best for my health, and for everyone really (for my life style and my sanity, maybe not so much!) but never expected to hear it from a regular GP!

Did anyone else do this? I've been psyching myself up to go gluten free regardless what she said, but this, for life, is much bigger than a 3 week experiment over the summer. I think I need to do it in stages.... maybe go gluten free first but rather than switching to processed replacements for bread, cereal etc, just use more natural options, like brown rice and quinoa. I think I can ditch most dairy (sob - bye bye icecream!), but maybe keep a bit of hard cheese and yoghurt until I get used to it? Would appreciate anyone's thoughts. I need to lose weight, so I'm not as worried about cutting so many starchy carbs as I'd imagine some of you would be.

Meanwhile, I have to wait for the blood tests to come back first though, because if they are positive I will have the biopsy for an official diagnosis. These last few weeks... it's scary to think I'll soon be gluten free and will have to be careful. I've pushed for this and I know it's for the best, but at 12 weeks into my gluten challenge I just feel regular crummy - like I have my whole life - and not as awful as when I first stopped being gluten free. I guess it'll be like that next time - being glutened will hurt much more after I've been gluten-free for awhile. I have a 4 week trip to the US planned for the end of September, that's going to be tough. For those who didn't have obvious symptoms, did you have a final gluten fling or just start gluten-free straight away?

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Great to hear you found a good GP - was it Dr Hardy or did you find someone else who knows their stuff?

In answer to your questions - While it is probably ideal to just cut out everything at once, I think do the best that you can about the other grains/dairy without driving yourself crazy to start with. Keeping away from a lot of the gluten-free replacement products is a good idea, and cutting down on the rest over time is understandable. What you are looking at is a very big diet adjustment, so doing it in stages is fine if that helps to stop you being overwhelmed. Maybe don't expect to feel 100% until you have cut out everything though.

Don't forget that gluten damage can be cumulative, so that fact that you don't feel totally horrible yet doesn't have to mean anything in the scheme of things. Some people have obvious and dramatic reactions, but not everyone. Sometimes the reactions can be very subtle, and it takes time to spot them (mouth ulcers/foot cramps/erratic mood for me). Also, from what I have read here, you would be very surprised to get positive blood work after only 5 weeks back on gluten.

Make sure you keep a food and symptom diary, as it can really help to work out what is wrong. You've already worked with a restricted diet, so work out what made it hard to stick to and work around it. Was it eating out, eating at work, needing to cook all the time? There are a lot of people here on different restricted diets, so I'm sure if you post asking for guidance or what they eat you will get some good information.

I found it helpful to have a last gluten weekend, I made a list of everything I would really miss, and had quite a lot of it. I felt so evil afterwards it helped to ride out the first few weeks gluten-free. Even if it doesn't make you feel sick, I think it helps to have a last go at some of it.

Also, if the blood work does come back positive this time, I don't think I would recommend the centre for digestive disease that I mentioned in the older post. The gastro I saw there doesn't believe in non-celiac gluten sensitivity, he thinks the fact that I react to gluten is down to anxiety. The fact that we worked out I was glutened by finding increased anitbodies and I didn't even suspect it, and my B12 and iron levels crash after gluten exposure doesn't change his opinion. I was coming around from sedation during this conversation, so I didn't get a change to argue my case well!

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Great to hear you found a good GP - was it Dr Hardy or did you find someone else who knows their stuff?

Hi! It was another doctor actually - a Dr Hungerford. I already had the appointment with her when I asked you and now that I've met with her I think I'm happy. It's so nice having someone who actually wants to investigate things. But I will definatley keep Dr Hardy's details.

What you are looking at is a very big diet adjustment, so doing it in stages is fine if that helps to stop you being overwhelmed. Maybe don't expect to feel 100% until you have cut out everything though.

I need to get my mind back to how much better it will make me feel. I know that logically but all of a sudden the craziest things are so attractive. I mean, I forked out a heap of money at the doctors and then went straight to McDonalds for dinner. In my defense, I had a class to go to that night. But I don't usually eat McDonalds!

Don't forget that gluten damage can be cumulative, so that fact that you don't feel totally horrible yet doesn't have to mean anything in the scheme of things. Some people have obvious and dramatic reactions, but not everyone. Sometimes the reactions can be very subtle, and it takes time to spot them (mouth ulcers/foot cramps/erratic mood for me). Also, from what I have read here, you would be very surprised to get positive blood work after only 5 weeks back on gluten.

I went to have the blood tests today. I'm really curious what my results will be, especially the gene test. It's been 14 weeks now of major gluten consumption, it'll be intersting to see if they've changed (I got 2 for both before, with >20 positive. What were your foot cramps like? When I wake my feet really hurt, they ache to walk on. It's one of the things I first noticed because on the paleo diet in Jan I was bounding out of bed, and as soon as I went back onto gluten they hurt again.

Make sure you keep a food and symptom diary, as it can really help to work out what is wrong. You've already worked with a restricted diet, so work out what made it hard to stick to and work around it. Was it eating out, eating at work, needing to cook all the time? There are a lot of people here on different restricted diets, so I'm sure if you post asking for guidance or what they eat you will get some good information.

That's good advice, I will start keeping a diary. Much more interesting writing down how I felt etc, than how many points or calories things have! As for how it was last time, well, for starters I need to learn to cook and I need to plan ahead so I have good, varied food choices. A diagnosis would be nice because I won't feel like I'm justifying yet another diet but that's my problem being self-conscious, no one else really cares all that much what I eat. If I can say, "I'm sorry but I can't eat that but don't worry, I've brought this instead" then I won't be persuaded to cheat by people just concerned that I'm really hungry and who don't understand why something I've loved in the past will never be eaten again.

I found it helpful to have a last gluten weekend, I made a list of everything I would really miss, and had quite a lot of it. I felt so evil afterwards it helped to ride out the first few weeks gluten-free. Even if it doesn't make you feel sick, I think it helps to have a last go at some of it.

Hee, I kind of did that while I was at my mum's place over easter. Jeans quite tight on the way home! I'd cry if I thought about never eating her Yorkshire pudding again so instead I'll remember that she made way too much for two people when I told her it might be my last time and then let me have all I wanted :-) I think I've eaten most things I love during the challenge, but I'm sure there are others so I'll have a think. I still have a few weeks at least :-) A couple of years ago I had a false positive on a blood test that indicated a blood clot in my lung and I had to rush to hospital for further tests. I felt fine so it was really hard to come to grips with the thought that I might drop dead any moment. I just couldn't think of anything that I wanted to do if I only had a short amount of time left, the idea was just too absurd. I feel a bit like that now with never eating gluteny things again.

Also, if the blood work does come back positive this time, I don't think I would recommend the centre for digestive disease that I mentioned in the older post. The gastro I saw there doesn't believe in non-celiac gluten sensitivity, he thinks the fact that I react to gluten is down to anxiety. The fact that we worked out I was glutened by finding increased anitbodies and I didn't even suspect it, and my B12 and iron levels crash after gluten exposure doesn't change his opinion. I was coming around from sedation during this conversation, so I didn't get a change to argue my case well!

Oh, I'm sorry about your experiences there :-( It really makes you wonder what reading they do to keep up with their field? I mean, there are plenty of peer-reviewed publications that talk about non-celiac gluten sensitivity out there! Anxiety can be debilitating, but it doesn't cause the kinds of reactions you have. It's quite the trick if you can make your B12 and iron levels plummet with the power of your mind!

Thanks for the reply! It's cool knowing you're local.

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