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Confused About Results

dalek100

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dalek100 Apprentice
dalek100
Posted

Hi, 

I am deeply sorry for being a nuisance and posting back on this forum. I posted a while back as previously I was under investigation for Celiac Disease. I had an anti-ttg anti-body test that came back positive at 23 H and following this a range of investigations have been carried out. I am still feeling at a loss with everything as I have had the following things done:

1. I had an endoscopy done but it was very quick and they did some biopsies and the report said it was 'inconclusive.'
2. I had a colonoscopy prior to this but this didn't find much apart from my colon being very blocked. 

However, some further tests were carried out recently and wondered if anyone had advice about this:

1. I have suffered from Pernicious Anameia for a long time but I have also now got folate deficiency anemia 
2. I have Vitamin D deficiency and the levels are getting lower
3. My consultant decided to do a calprotectin test and the result for this came back at 106 H. 

My consultant suggested that I tried the gluten free diet and I did for a short time from around June to August time. However, I started to react badly to Xanthan Gum in the foods and so switched back to normal gluten based foods in September on wards. I have continued to suffer and be in a lot of agony and now I am finding it difficult generally. 

My consultant requested me to have a pillcam endoscopy, which I had completed today. I have got to hand this in tomorrow.  

I am very worried because I am now only around 7 stone in weight and I am continuing to lose weight despite my intake being the same. I am also feeling weaker and weaker in myself. I was wondering whether it is possible for this still to be Celiac Disease even though the original endoscopy didn't find anything? I also wondered if I went back on the gluten food at the beginning of September, whether this would be enough time for it to show with the capsule endoscopy? 

I am dearly sorry for bothering you all on here. I haven't been well and still feel dreadful and it is getting harder and harder to do my job as well, which is what worries me the most as I have to support my family. I wondered whether Celiac Disease can cause elevated calprotectin and today when I had the pill camera and tested me, she said immediately that there was still a lot of food showing even though I had fasted way before the suggested time? 

I am thinking of trying to get another consultant as I am getting no where and now doubting myself but wasn't sure if the calprotectin result is an indicator and the folate that has suddenly come back low as well. What also worries me is having gone from gluten free to back on gluten and whether it hasn't been long enough. 

Thank you for everyone on this forum that has helped and I am sorry it has taken me this long to post but I am in a bit of a state and do not feel anything like I used to. 

Dalek. 

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Jmg Mentor
Jmg
Posted

Hello again and as ever, please don't apologise. It's nice to hear from you again, although I'm sorry things have been rough for you in the meantime. 

To this question:

1 hour ago, dalek100 said:

I was wondering whether it is possible for this still to be Celiac Disease even though the original endoscopy didn't find anything?

Yes. We have members here who had multiple negative or inconclusive tests and more than one endoscopy. It could be celiac, which may be one reason your consultant has asked for the pill cam, there could be signs beyond the reach of the endoscope.

 

1 hour ago, dalek100 said:

I also wondered if I went back on the gluten food at the beginning of September, whether this would be enough time for it to show with the capsule endoscopy? 

Yes, at least I think so, as 2 weeks can be the length of time for an endoscopy gluten challenge. 

1 hour ago, dalek100 said:

. I wondered whether Celiac Disease can cause elevated calprotectin

Open Original Shared Linkaccording to this paper, but there's also articles online thatOpen Original Shared Link

Quote

Fecal calprotectin is not specific for IBD but rather indicates immune cell infiltration into the gut lumen. Calprotectin levels can therefore be elevated in a variety of inflammatory conditions including celiac disease...

I should note that some of the claims made by those companies may not stand up, handle with care...

 

1 hour ago, dalek100 said:

What also worries me is having gone from gluten free to back on gluten and whether it hasn't been long enough. 

To be honest I'd say that you didn't give the diet long enough to establish whether it could help. One suggestion, if you go back on it, try to avoid all processed foods, including those with xantham gum for the first weeks and ideally months. Your stomach is very delicate during this time and even the gluten free processed foods can be hard for it. 

All the best as always

Matt

Victoria1234 Experienced
Victoria1234
Posted

Please post as often as you want, with as many questions as you like!

just an FYI, I rarely have xanthan gum. Probably a couple times a year for birthday cakes, that is all. There is no need to have it often if you are eating a whole food gluten-free diet. And I've been gluten-free almost 10 years now.

I do so hope you are able to go gluten-free again very soon so you can feel better.

GFinDC Veteran
GFinDC
Posted

Hi dalek100,

I had low vitamin D for years.  It is hard for our bodies to absorb nutrients when our guts are not working right.  Plus vitamin D is not present in most foods.  It is found in oily fish like sardines, mackeral, tuna and salmon.  Also you can make it on your skin if you get out in the sun at the right time of day in summer and for long enough.  Sun exposure is helpful but some parts of the world don't have enough sun for it to work well.  And the angle of the sun has to be right also, so depending on the lattitude it can be a problem.  You can find more info at the vitamin D council web site.   Open Original Shared Link

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