New diagnosis?

[Sabrine]

I was being tested for a skin issue and a coeliac diagnosis of a “weak positive (level nine)” has come back. It was what they call an incidental finding. I’m not really sure what that means and I’ve always thought I had a cast iron stomach but suffered from constipation and bloating because of my osteoporosis medication. I’ve had osteoporosis for many years and it is connected to my wheelchair use and multiple sclerosis so not the coeliac. I have just weighed myself and realise that in the last month I have lost nearly stone in weight. The dermatology nurse who spoke to me said it was nothing to worry about and if I didn’t have gastric symptoms I should just ignore it but given the weight loss I assuming that I shouldn’t ignore it. Could someone advise me about what I should do now. I’m assuming going straight onto a gluten-free diet is important. I’m in the UK so should I ask for further investigation? Or is level nine and “weak positive” a definite diagnosis of coeliac? 

[Scott Adams]

A positive test is still positive, and I personally don't believe in such a thing as a "weak positive," as this designation is relatively new, and began around 10 years ago.

If you'd like to share your actual blood test results here feel free to do so, but be sure to include the reference range for positive.

The next step is normally an endoscopy for celiac disease, and to do that you would need to keep eating gluten daily until that test is completed, but if you are unable to get that done soon you could also go gluten-free during the weeks or months leading up to, and then eat a log of gluten daily for at least 2 weeks before that test. Be sure to consult with your doctor before you go gluten-free.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

PS - Many people with celiac disease don't have obvious symptoms, so what the nurse told you is incorrect--if you have celiac disease you need to treat it with a gluten-free diet whether or not you have any symptoms.

[Sabrine]

Thank you. I’m not sure if asking for an endoscopy is pointless or not. I will start reading up on gluten-free foods as the diagnosis has come as a complete surprise to me but I certainly don’t want to lose any more weight as I’m down to 7 stone six and I am 5 foot five. What advantages are there in getting an endoscopy result? I’ve only spoken to a nurse on the phone so the only information I have is the weak positive comment and the level nine.  I don’t think she intends to pursue it so I would have to ask for the endoscopy.

[Scott Adams]

Some people on our forum need a formal diagnosis on a piece of paper in order to comply with a 100% gluten-free diet, but some don't. If you feel like you can go gluten-free without it then a formal diagnosis may not be necessary. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Sabrine]

Thank you. I will read it in detail. And there is one piece of advice I would really like. Given that this fairly drastic weight loss has happened in the space of the last six weeks I would really appreciate it if someone could tell me what are the most fattening gluten-free things that I can binge on because I would feel a lot better if I could put some weight back on.I don’t eat meat. And I have definitely noticed that my appetite has been much smaller recently.  I have so many health conditions. I have multiple sclerosis, osteoporosis, a faulty hip replacement, an arrhythmia, an aneurysm, blepharitis, dermatitis and my personal favourite is acrocyanosis which no one has ever heard of including me! (Purple fingers). That was what I was being tested for when the coeliac diagnosis was picked up. I know coeliac is not going to kill me if I do the right things but at the moment I’m really feeling as if it’s the last straw!

 

 

 

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[trents]

Sabrine, what test was used to diagnose you as have celiac disease? 

Have you had any vitamin and mineral deficiency testing done. If you don't eat meat it concerns me that that you may be missing some key nutrients. Some nutrients are just hard to get from non animal sources at least in sufficient amounts. Perhaps the best example is vitamin B12. Do you consume eggs and dairy?

[cristiana]

Hi Sabrine

I'm a UK Coeliac so thought I'd chime in.

(and welcome to the Forum, by the way!)

I would definitely encourage you to go for a proper diagnosis.  In Britain, the medical community takes a diagnosis of Coeliac Disease very seriously, as there can be quite a few complications related to this autoimmune disease if a gluten free diet is not followed correctly.  Even if one does follow the diet 100 percent from diagnosis, there can be complications resulting from years of going undiagnosed, such as osteopenia/osteoporosis.   But the good news is because the medical profession takes it seriously, you should get a lot of extra support from the NHS with proper diagnosis, such as:

• Support from a nutritionist
• Annual coeliac blood tests to check for dietary compliance, and for any new conditions which may arise.
• An annual review with a gastroenterologist
• DEXA scans, although I suspect you are already having those.
• In some areas, NHS prescriptions for Gluten Free staples such as flour and bread
• Vaccinations for flu and pneumococcal infections (because 30 per cent of coeliacs have  reduced splenic function).

In order to get the diagnosis, you will need to remain on gluten until the endoscopy.  As @Scott Adams says, however, if you have a long wait until the endoscopy you may decide to stop eating gluten, or cut back, but must get back onto it several weeks preceding the endoscopy.  The problem is if you come off it altogether your gut may heal so no damage will be shown on endoscopy.  

I would recommend you look at the Coeliac UK Website for extra information on the UK diagnosis protocols.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

I hope some of this is of assistance.

Cristiana

 

[cristiana]

PS

Sorry @Sabrine, I missed your last point about fattening food.

I was in this place at diagnosis, I've never lost weight so fast but I can tell you that now it has come back on, and more!  😂

These foods are full of good fats, and are naturally gluten free.

• Avocados.
• Cheese.
• Dark chocolate.
• Whole eggs.
• Fatty fish.
• Nuts.
• Chia seeds.
• Extra virgin olive oil.

 Also, if you can tolerate dairy, go for full fat anything.

However, as I said, if you opt for an endoscopy please don't give up gluten altogether before the test:  normally, it is advised to keep eating 2 slices of glutinous (i.e. normal) bread or the equivalent DAILY until the test.  I took the view that this was the 'last chance saloon' to eat what I might miss most after going gluten free, so ate the equivalent in Weetabix and McVities Penguins!

Cristiana

 

[Sabrine]

Thank you. I was fine yesterday but I’m feeling a bit overwhelmed now. Mainly because this isn’t fair! I’ve had MS for 25 years so have to use a wheelchair because of my balance. I’ve had a faulty hip replacement that needs a revision. I have terrible osteoporosis, and in the last five years I’ve been diagnosed with an arrhythmia, which seems fairly harmless, an aneurysm, which thank goodness isn’t growing in my aorta, and in the last few weeks I’ve been told I’ve got blepharitis, which isn’t serious at all, just annoying, acrocyanosis which means my hands turn purple and nobody can find out what’s wrong, dermatitis, and now  this.  I’m not in my dosage yet and my main enjoyment in life is going out for coffee and dinner and lunch with friends. Still, I’m trying to stay positive and if a gluten-free diet sorts the constipation I’ve had for two years that really will be nice. I do eat fish and lots of vegetables and pulses so the diet won’t be a huge change for me but right now I just want to know how serious the damage is that I’ve already done. 

[Sabrine]

I love your  “last chance saloon” comment.  That’s exactly how I’m feeling and I have far too much nice food in the kitchen to throw away just yet.

[cristiana]

HI Sabrine

I am so sorry, you are having to cope with such a lot.  This news must be overwhelming.  

However, one thing to bear in mind is something I learned when I was first diagnosed. I spent a lot of time reading people's experiences of Coeliac Disease and found that sometimes all sort of strange and seemingly unrelated symptoms can improve on a gluten-free diet, so perhaps when you adopt a gluten-free diet you might find that, say, the dermatitis improves.   

With regards to coffee, dinner and lunch, I've been diagnosed  for 11 years now and I can say that I am finding  recently caterers are becoming much better at catering for coeliacs.   I hardly ever used to eat out but do now. 

LIke me you like a good coffee!  The good news is, most cafes and tea rooms get in cakes made in separate gluten-free facilities these days.   

When it comes to eating main meals, I would advise you order meals which have a very small margin for error - for example, baked potatoes and cheese don't contain gluten.  I would order that dish over gluten-free pasta anytime, which can so easily be muddled up with an identical-looking dish made with gluten on the way to the customer. I've been handed the wrong pasta in the past, whilst my friend was left to eat my gluten-free meal! 

Also, if you order anything with bread always double check they've given you the right stuff.  Six years ago and only last month I was given meals with normal bread.  The poor chef had gone to great lengths to prepare gluten-free food, only for the stressed overworked waiting staff to plonk the wrong bread on the plate before they served the food!

Best to ring a restaurant beforehand and ask to speak to the chef and perhaps pre-order.  I find it is often easier to ask a chef what they would recommend for a Coeliac, it seems to register in their minds better!   Also, beware of chips which are often fried in the same frier that they use to cook battered fish.

Honestly, it will soon become second-nature.  And I think before too long you will find some delicious alternatives in the gluten-free aisle.

Cristiana 

 

 

 

 

 

 

Edited July 18, 2024 by cristiana