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Scarletgrrrl

Wait For Test Results Is Doing My Head In!

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Hi

I had my endoscopy on the 11th july and my follow up appointment is not until the 8th August. It is doing my head in having to wait! I called up the secretary to see if I could be on the wait list if an earlier appointment comes up but the gastro. is filling in for another doctor and is fully booked.

I first thought I may have celiac after my doctor suggested it back in march. The blood test came back negative but I hadn't been eating it on a regular basis. On easter saturday I ate a hot cross bun, some banana bread and then had some pasta at a friend's place. That sent me over the edge and I was really sick with stomach issues. (I'd had similar stomach issues the previous year which were so bad I had to go up to the hospital emergency). I stopped eating gluten then went to the doctor the following friday.

When the doctor suggested celiac I did some research and I really think this has been my problem all these years. I got to the point where eating was so painful I was happy to cut out gluten to make it more bearable. I cut it out for 8 weeks and started to feel a lot better. Before I stopped the gluten, amongst my symptoms were hearing loss, back pain and numbness, tingling in my toes, mouth ulcers, arthritis like pains in my ankle and wrist, jaw pain, sore tongue on occasion. The list goes on… After the 8 weeks gluten free, I reintroduced gluten to prepare for my endoscopy. Luckily my doctor didn't dismiss my negative blood results and sent me to see a gastroenterologist. A locum was filling in for the gastro. and he said 'it is probably IBS'. I know it is definitely gluten! The day I started back on the gluten diet I was sick and remained sick for the whole 7 weeks. The locum suggested reintroducing it for 2 weeks prior to the endoscopy. A friend who has celiac ate gluten for 6 weeks prior to her endoscopy and the uni of chicago celiac centre suggests 6-8 weeks so I thought 7 was a good amount of time.

The main way it affected me was ear, nose and throat. I had a permanently blocked nose full of green snot. I had to take these drops to unblock it at night so I didn't wake up with a really dry mouth. I got an ear infection when I went on holidays and had to stop the challenge for a week. I also got a lung infection and it was really painful and I had trouble breathing. In 2011 I had 2 bouts of pneumonia. I now believe these were related to gluten. There was one day I had a little more gluten than the other days: a piece of bread, a small piece of cake and some pasta. The next day I couldn't move and had to lie in bed all day. My joints were painful particularly in my neck and upper back. My stomach was sore and I threw up.

I wrote a gluten bucket list and went through it eating tthings I would potentially miss like a really good italian pizza, ricotta cannoli, etc. Towards the end and the way I was feeling, I will not miss these foods!

My partner doesn't really get it and wonders whether gluten is really the issue. Since I have been gluten free I have felt like I have been glutened a few times. I am not sure if there has been cross-contamination in my food or from a shared kitchen. I think one time it was from a contaminated wooden spoon. I have my own toaster now, bought a 'gluten-free' wooden spoon. I would love for the whole house to be gluten free but I don't know if that is going to happen.

 

I kind of feel as if I am putting my life on pause waiting for the results. I have a lot of healing to do. I have been sleeping most nights 11-12 hours which is a lot considering I have 2 young boys to look after. I suspect the 3 year old has issues with gluten too. Once I get my results we can look into whether he has an intolerance too.

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Waiting is hard. It can totally drive you batty. I'm waiting on some (unrelated to celiac) tests right now, and I must admit that thoughts of the test pop into my head every hour - and you just can't stop it can you? Hang in there.

 

I agree that you should get your kids tested too. celiac disease runs in families, and from what I have seen in my family and in those of my friends, so does NCGS. Because non-celiac gluten sensitivity has the same symptoms as celiac disease, minus the villi atrophy which causes negative blood tests, you might consider that for a diagnosis for yourself if the celiac disease tests are not definitive.... many aren't. If you go gluten-free, consider making the kids gluten-free too. They could have NCGS, even if they are fine, gluten isn't healthful for anyone... just tastes good.

 

Best wishes.

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I am now gluten free. I would love my son to be gluten free too (in fact the whole family as I agree gluten isn't good for anyone IMO) My son gets eczema which seems to flare up more after he has eaten gluten. Occasionally he has complained of tummy pains which haven't been related to gastro. He has really stinky farts and poos. The doctor wanted to wait until I got my diagnosis before we start testing him. He goes to childcare 3 days a week so I would need to get them on board with his diet. So tricky as gluten is in so many things.

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