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Scarletgrrrl

Member Since 01 May 2013
Offline Last Active May 01 2014 02:50 AM
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Topics I've Started

4 Yr Old Son

12 September 2013 - 03:11 AM

After recently being diagnosed with gluten intolerance (marsh 1 lesions), I got my 4 yr old son blood-tested. I am not sure which tests they did (they didn't do the full panel with me) but the nurse told me over the phone his gliadin is elevated and his iron levels are low. I have to wait a week until my appointment, but I thought I would post to see what people's thoughts are.

S


Marsh 1

08 September 2013 - 04:50 PM

I got my results from my endoscopy a month ago now and I am still trying to work things out. I have duodenitis (inflamed duodenum) with increased intraepithelial lymphocytes. My villous crypt ratio is 2:1. (I have read the normal ratio is 4-5:1).

From my research this is called mild enteropathy celiac disease (one article even calls it a wolf in sheep's clothing). They also call it potential celiac disase or someone likely to develop it down the track. I have been virtually gluten free for about 5 years prior to the gluten challenge just having the odd thing occasionally. I struggled with the gluten challenge as my body has become so sensitive to gluten now. I am not sure if I didn't consume enough for the challenge or the disease is yet to develop.
Since the endoscopy and going gluten free, I have been diagnosed with iron deficiency anaemia. I accidentally had some gluten 3 weeks ago and since then I have had rhinitis (my nose is permanently blocked with green snot!). This was a symptom that I had during my gluten challenge. I have also started to develop an itchy rash on my knee.

S


Help With Results

09 August 2013 - 10:40 PM

Hi

I finally had my follow up appt with the gastro. on thursday. The results were that I had mild duodenitis consistent with gluten intolerance. I have an increase in intraepithelial lymphocytes and the villous/crypt ratio was 2:1. They unfortunately only did 3 biopsies.

They said it was gluten intolerance and not celiac disease but I just don't know how vigilant I need to be. I have read that normal villous/crypt ratios are between 3:1 and 5:1 so this falls below the normal range.

What are your thoughts?

S


Wait For Test Results Is Doing My Head In!

24 July 2013 - 03:48 AM

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.


Endoscopy And Colonoscopy Tomorrow

09 July 2013 - 09:57 PM

Hi

I have my endoscopy and colonoscopy tomorrow. I strongly suspect I have celiac disease but I have had 2 blood tests. I hadn't been consuming gluten 12 weeks prior to either test. They didn't do the full celiac blood panel. I took the list into the doctor last time (my usual doctor was away) and he just looked at me and had no idea.

I went off gluten in march for 8 weeks and started to feel good by the end of it only to have to reintroduce it for this procedure tomorrow. I have been on gluten for most of the last 7 weeks. I had to stop for just over a week as I was on holiday in New Zealand. I still had to go to a doctor there: I had an ear infection and a  bad lung infection (all courtesy of gluten). I needed antibiotics. Every since I reintroduced gluten I have had respiratory problems with a nose constantly full of green snot. I haven't even been having much gluten every day. I am just so sensitive now. On saturday with the tests coming up, I had a bit more (a piece of bread, small piece of cake and some pasta), the next day I couldn't move. I had to lie in bed all day in pain.

I have to wait 4 weeks for my follow up visit. Will the gastro. give me any indication of what he sees on the day or will I just have to wait?

I really miss food. This day of liquids isn't easy. I am enjoying my broth though. :)

Scarletgrrrl