First diagnosis @ 83 - I need advice whether to be or not to be Gluten Free for life.

[SirMakem]

Aged 83 I had an itchy back and had a blood sample taken as a matter of course because they thought it was moles which I have a lot of due to foreign travel in hot countries for many years. Blood result returned was at 128 level (forget the actual name) and apparently the norm is 7!

I am A symptomatic but was advised to go Gluten Free which I have done for the moment. My itchy back came and went and has not returned.

My wife is a brilliant cook/baker and apart from the odd meal out all out food and bread is prepared at home. We have been married some 15 years and I love home made bread, eating it every day. I do wonder if bread, cakes etc have brought this problem forward to notice, having maybe layed dormant. Or, could it have been triggered by Covid which I had shortly before the diagnosis. It does seem strange, I go some 68 years eating 'normal' (2 wives), then marry again and eat what has not been the norm for all my working life that I am suddenly 128!

I now have to decide, should I struggle, and it is a struggle, to go completely gluten-free for life? I am fit and well apart from COPD after smoking 50 years. We travel widely, have visited 22 countries some numerous times, been round the world and want to continue when our shackles are removed.

We never use package tours, fending for oursleves wherever we end up. It could be in a 'jungle' in Jamaica or the back of beyond in China, to New Zealand. I cannot imagine travelling as we do and trying to be gluten-free.

I am considering persisting gluten-free for 6 months and then deciding whether to continue.

I would appreciate some information bearing in mind my so far healthy A symptomatic life, about symptoms I could expect from people who are of a similar age and late diagnosis. I am sorely tempted to ignore gluten-free, I mean how much longer can I expect to live? Something else will get me lol.

[trents]

Welcome to the forum, SirMakem!

Can you get more specific information about what blood test returned a value of 128? My guess would be that is the tTG-IGA score as that is the most common test run when checking for celiac disease. You never come out and say it but may we assume you were diagnosed with celiac disease? The "itchy back" may be due to dermatitis herpetiformis (abbreviated "DH") which is a classic indicator of celiac disease since DH has no other known cause. My guess would be the itchy back was what triggered the blood antibody tests for celiac disease since you say you have no other symptoms. Were any of your other blood values out of whack such as the tests for iron stores that would indicate anemia?

Celiac disease can manifest itself at any stage of life. One has to have the genetic potential for it but to be actively expressed there also has to be a stress trigger such as a viral infection. And you do mention you had COVID.

Reckon with the fact that if you eat gluten free for a significant amount of time and then return gluten to your diet your itchy back may come back with a vengeance and you may develop other symptoms. Once you go off of gluten for a significant amount of time it is common to lose all tolerance to it.

Other than that, I have no strong recommendations for you given your lack of symptoms in addition to the back itch and your stated lifestyle preferences and interests. Your situation is rather unique. I have in his late 80's who was diagnosed with celiac disease about 10 years ago but chose to continue eating gluten because he is very social and realized that to get serious about eating gluten free he would have to give up many of the activities that were central to his happiness. He is now very close to death but who's to say he wouldn't have been anyway.

[SirMakem]

12 hours ago, trents said:

Welcome to the forum, SirMakem!

Can you get more specific information about what blood test returned a value of 128? My guess would be that is the tTG-IGA score as that is the most common test run when checking for celiac disease. You never come out and say it but may we assume you were diagnosed with celiac disease? The "itchy back" may be due to dermatitis herpetiformis (abbreviated "DH") which is a classic indicator of celiac disease since DH has no other known cause. My guess would be the itchy back was what triggered the blood antibody tests for celiac disease since you say you have no other symptoms. Were any of your other blood values out of whack such as the tests for iron stores that would indicate anemia?

Celiac disease can manifest itself at any stage of life. One has to have the genetic potential for it but to be actively expressed there also has to be a stress trigger such as a viral infection. And you do mention you had COVID.

Reckon with the fact that if you eat gluten free for a significant amount of time and then return gluten to your diet your itchy back may come back with a vengeance and you may develop other symptoms. Once you go off of gluten for a significant amount of time it is common to lose all tolerance to it.

Other than that, I have no strong recommendations for you given your lack of symptoms in addition to the back itch and your stated lifestyle preferences and interests. Your situation is rather unique. I have in his late 80's who was diagnosed with celiac disease about 10 years ago but chose to continue eating gluten because he is very social and realized that to get serious about eating gluten free he would have to give up many of the activities that were central to his happiness. He is now very close to death but who's to say he wouldn't have been anyway.

Thank you @trent for your input,

My blood test was triggered by the itchy back and the result was:

IGA ENDOMYSIAL ANTIBODIES;IGA TTG Report, Abnormal, Need to speak to doctor.

Tissue transglutaminase IgA level (XaJg2) > 128 u/mL [0 - 6.9]

All other blood values were normal.

Your comment:

"Reckon with the fact that if you eat gluten free for a significant amount of time and then return gluten to your diet your itchy back may come back with a vengeance and you may develop other symptoms. Once you go off of gluten for a significant amount of time it is common to lose all tolerance to it."

Worries me as it would appear that I would be making things worse if after 6 months gluten-free I was to return to food with gluten.

Your comment:

"I have in his late 80's who was diagnosed with celiac disease about 10 years ago but chose to continue eating gluten because he is very social and realized that to get serious about eating gluten free he would have to give up many of the activities that were central to his happiness. He is now very close to death but who's to say he wouldn't have been anyway."

Tends to back up what I am thinking. If I reached 93 and had to curtail my life style I feel sure I would be happy that I had made the right choice today. But what caused him to be close to death? Is the cause related to Celiac or just a general deterioration due to normal ageing?

I suppose what I am really asking is, given my current relative good heath other than Celiac, what could I expect to happen and over what period if I ignore the advice and carry on as before, now?

I am fully aware of the possible consequences of not going gluten-free but I have no idea how I would know that the consequences were making themselves apparent. After all, over what might be more than lets say at least 30 years I have gone from 7 to 128 and was unaware.

 

[trents]

You ask: "But what caused him to be close to death? Is the cause related to Celiac or just a general deterioration due to normal ageing?" Congestive heart failure mainly it seems. He is in his late 80's now. He was one of ten children. Seven of his brothers and sisters are or did live into their late 80s and mid 90's. Of the two that didn't, one died in mid life of breast cancer and the other of unnatural causes. The uncle in question here, would he still be relatively healthy had he gone gluten free? Who can know. I can tell you he started losing weight and developed profound weakness and significant memory loss about three years ago.

You ask: "I suppose what I am really asking is, given my current relative good heath other than Celiac, what could I expect to happen and over what period if I ignore the advice and carry on as before, now?" I don't think anyone can give a definitive answer to that question.

You ask: "After all, over what might be more than lets say at least 30 years I have gone from 7 to 128 and was unaware." Apparently, you are what we call a "silent celiac," i.e, asymptomatic at this point. I would guess your COVID infection triggered the active Celiac disease. Silent celiacs tend to develop more dramatic symptoms over time as the damage to the small bowel villi increases and nutritional absorption decreases. Anemia, osteoperosis, fatty liver hepatitis and neurological issues are some of the problems that can follow down the line over time.

Edited February 5, 2022 by trents

[trents]

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

[SirMakem]

18 minutes ago, trents said:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

Having read your url I have realised I do have a small area on my left arm inner aspect, close to the elbow joint, which is redder than the surrounding skin. There is a similar smaller area near the wrist on the inner aspect of my right arm.

Neither area is itchy or has any raised area/parts, they just appear a different colour. I wonder if my stopping eaten gluten has held the areas in check and they might have become DH had I not.

As for my back, that itchiness disappeared when I stopped using some new vests I bought last year. I put it down to the special lightweight thermal viscose material as they were not the cotton I normally wore. I only stopped for a month or so then returned to and still now use them without any ill effect.

I suppose asking for skin check is a bit OTT at the moment.

What a quandary!

[SirMakem]

6 minutes ago, SirMakem said:

Having read your url I have realised I do have a small area on my left arm inner aspect, close to the elbow joint, which is redder than the surrounding skin. There is a similar smaller area near the wrist on the inner aspect of my right arm.

Neither area is itchy or has any raised area/parts, they just appear a different colour. I wonder if my stopping eaten gluten has held the areas in check and they might have become DH had I not.

As for my back, that itchiness disappeared when I stopped using some new vests I bought last year. I put it down to the special lightweight thermal viscose material as they were not the cotton I normally wore. I only stopped for a month or so then returned to and still now use them without any ill effect.

I suppose asking for skin check is a bit OTT at the moment.

What a quandary!

I don't see any way to edit my previous post so will add a further thought here.

Many years ago I did suffer from raised tiny water filled itchy blisters on my fingers. It was very embarrassing because part of my job was to teach officers how to take fingerprints. That cleared up and I don't think ever returned. However, I did get and have noticed liquid filled blisters on the soles and edges of my feet. They can be painful  but are best ignored as they are absorbed and disappear. I must say since I stopped eating gluten I have forgotten about them.

[trents]

I would be more worried about what may be happening in your gut than on the outside. Are you in the UK? Did your doctor talk to you about an endoscopy with biopsy to check for damage to the small bowel villi? In the UK, when tTG_IGA values are 10x normal or greater the convention is to assume you have celiac disease and they will generally forego the endoscopy/biopsy which has been the gold standard for celiac diagnosis.

Edited February 5, 2022 by trents

[trents]

You have 15 minutes I believe to edit a post. The edit tool is in the three dots at the upper right corner of the post window.

[Scott Adams]

Welcome to the forum! Your skin condition is likely dermatitis herpetaformis, which, in some celiacs, can get debilitating due to the rash and severe itchiness. As @trents mentioned, it’s very important to find out the  condition of your gut/villi as well, so you should consider an endoscopy to determine this, but you’d need to eat gluten, two slices of wheat bread daily, for at least two weeks before.

[SirMakem]

2 minutes ago, Scott Adams said:

Welcome to the forum! Your skin condition is likely dermatitis herpetaformis, which, in some celiacs, can get debilitating due to the rash and severe itchiness. As @trents mentioned, it’s very important to find out the  condition of your gut/villi as well, so you should consider an endoscopy to determine this, but you’d need to eat gluten, two slices of wheat bread daily, for at least two weeks before.

I have had an endoscopy which confirmed the blood result as Celiac disease. Have done research pointed out by @trents, I agree the skin does present like mild DH and would probably be worse if I continued eating gluten.

It is beginning to look like I must be resigned to a gluten free life. That being so I need to research recipes which my wife can prepare for every day use and how to find gluten-free food prior to travel to each country. I am in the UK and it does seem that gluten-free stocks in shops is increasing. However the prices are very high due to smaller demand and this may improve.

We currently use this web site as the only one I can find with a wide range of recipes. I am lucky that my wife enjoys experimenting with food and would live in the kitchen! So far she has successfully made better bread than that we can purchase. Pastry is her current challenge.

Many thanks to all for your support and advice. My conclusion: Go gluten free for life and get used to it even if the stuff you eat never tastes like that you ate in the past. You will get used to it! Hopefully in my case 🙂

 

 

[Russ H]

On 2/5/2022 at 5:11 PM, SirMakem said:

I have had an endoscopy which confirmed the blood result as Celiac disease. Have done research pointed out by @trents, I agree the skin does present like mild DH and would probably be worse if I continued eating gluten.

It is beginning to look like I must be resigned to a gluten free life. That being so I need to research recipes which my wife can prepare for every day use and how to find gluten-free food prior to travel to each country. I am in the UK and it does seem that gluten-free stocks in shops is increasing. However the prices are very high due to smaller demand and this may improve.

We currently use this web site as the only one I can find with a wide range of recipes. I am lucky that my wife enjoys experimenting with food and would live in the kitchen! So far she has successfully made better bread than that we can purchase. Pastry is her current challenge.

Many thanks to all for your support and advice. My conclusion: Go gluten free for life and get used to it even if the stuff you eat never tastes like that you ate in the past. You will get used to it! Hopefully in my case 🙂

 

 

You get used to it. The main difficulty is eating out. I haven't found a gluten-free bread as nice as real wheat bread but there are some excellent gluten-free pastas. It has severely curtailed my beer consumption, which is probably for the best. Good luck!

[Russ H]

Btw, I found some good bread and pastry recipes here:

https://glutenfreeonashoestring.com/

[SirMakem]

11 minutes ago, Russ314 said:

You get used to it. The main difficulty is eating out. I haven't found a gluten-free bread as nice as real wheat bread but there are some excellent gluten-free pastas. It has severely curtailed my beer consumption, which is probably for the best. Good luck!

I'm lucky with bread but your take on pasta would be useful. I used to always have spaghetti bolognase once in every country I visited if it was available. I compare it with the true made in the Italian country side by a family wife. I had the worlds worst in the UK the other nite in a supposedly Italian restaurant

[Russ H]

2 minutes ago, SirMakem said:

I'm lucky with bread but your take on pasta would be useful. I used to always have spaghetti bolognase once in every country I visited if it was available. I compare it with the true made in the Italian country side by a family wife. I had the worlds worst in the UK the other nite in a supposedly Italian restaurant

Ha, I know what you mean. The trick is finding a genuine Italian restaurant, staffed by Italians. If they struggle with English, all the better. I have been nomadic for the past year and eating out a lot, so I have learnt to be polite but persistent when asking about food preparation. Only takes a single contaminated meal to boost antibodies.

[SirMakem]

6 hours ago, Russ314 said:

Btw, I found some good bread and pastry recipes here:

https://glutenfreeonashoestring.com/

Thank you.

I have been using this one:

 

[Scott Adams]

Barilla is an Italian pasta maker that also makes outstanding gluten-free pastas that are widely available. As for gluten-free beers:

 

[SirMakem]

5 hours ago, Scott Adams said:

Barilla is an Italian pasta maker that also makes outstanding gluten-free pastas that are widely available. As for gluten-free beers:

 

Thank you. Tesco is cheapest around here. But mention the words 'gluten free' and expect double price probably.

I'm not a beer drinker but I have been looking for something to add to milk for a hot drink. I uses to add malt and have changed to chocolate but it is very sweet

I usually drink lime and lemonade when out as i am the driver.

[Russ H]

On 2/7/2022 at 11:34 PM, SirMakem said:

Thank you. Tesco is cheapest around here. But mention the words 'gluten free' and expect double price probably.

I'm not a beer drinker but I have been looking for something to add to milk for a hot drink. I uses to add malt and have changed to chocolate but it is very sweet

I usually drink lime and lemonade when out as i am the driver.

The Barilla pasta is good. I like Sainsbury's own brand brown rice pasta. It is in the pasta section rather than the free-from aisle but is gluten-free. Have to be careful cooking as it rapidly turns from undercooked to overcooked.

[Rogol72]

On 2/5/2022 at 5:11 PM, SirMakem said:

I have had an endoscopy which confirmed the blood result as Celiac disease. Have done research pointed out by @trents, I agree the skin does present like mild DH and would probably be worse if I continued eating gluten.

It is beginning to look like I must be resigned to a gluten free life. That being so I need to research recipes which my wife can prepare for every day use and how to find gluten-free food prior to travel to each country. I am in the UK and it does seem that gluten-free stocks in shops is increasing. However the prices are very high due to smaller demand and this may improve.

We currently use this web site as the only one I can find with a wide range of recipes. I am lucky that my wife enjoys experimenting with food and would live in the kitchen! So far she has successfully made better bread than that we can purchase. Pastry is her current challenge.

Many thanks to all for your support and advice. My conclusion: Go gluten free for life and get used to it even if the stuff you eat never tastes like that you ate in the past. You will get used to it! Hopefully in my case 🙂

 

 

I empathise with you. I've had DH since 2010. You do get used to it.

Here's a recipe site ... https://glutenfreecuppatea.co.uk/

I was in the UK recently on a day trip. Had some gluten free sandwiches at an event provided by the restaurant. I was the only Coeliac there. They were delicious ... made with Warburtons gluten-free Loaf ... https://www.warburtonsglutenfree.com/

This company is Italian and makes certified gluten-free pasta.

https://www.pastarummo.it/en/list/products/gluten-free/

Coeliacs can get 20% back on the cost of foods made to be gluten free, like breads, pastas etc. Coeliac UK should be able to provide details if there is a similar scheme there.

[SirMakem]

44 minutes ago, Rogol72 said:

I empathise with you. I've had DH since 2010. You do get used to it.

Here's a recipe site ... https://glutenfreecuppatea.co.uk/

I was in the UK recently on a day trip. Had some gluten free sandwiches at an event provided by the restaurant. I was the only Coeliac there. They were delicious ... made with Warburtons gluten-free Loaf ... https://www.warburtonsglutenfree.com/

This company is Italian and makes certified gluten-free pasta.

https://www.pastarummo.it/en/list/products/gluten-free/

Coeliacs can get 20% back on the cost of foods made to be gluten free, like breads, pastas etc. Coeliac UK should be able to provide details if there is a similar scheme there.

I had a barium meal xray last weekend got chatting the the radiologist. He mentioned that some 10 years ago in the UK you could get a prescription for gluten free food from a GP. He mentioned this web site:

https://www.glutafin.co.uk/just-diagnosed/your-prescription/your-prescription-england/

I did some digging and found that if I lived in the NE of the UK (relatively poor area they say), I could get s prescription. I live in the East of UK (relatively rich they say), we cannot get a prescription.

Apparently he got a hamper of gluten free food, including cakes, from the above company at the time. But not so today. In the NE they probably just get bread and flour.

 

I do think it would be helpful if our food was subsidised to some extent as the cost is relatively high.

Extract from Coeliac UK:

With NHS budget cuts we are seeing some areas in England restricting or cutting gluten free prescribing, but around 60% of Clinical Commissioning Groups (CCGs) continue to recommend that GPs prescribe gluten free bread and flour mixes. We are campaigning for gluten free prescribing to remain an NHS support for people diagnosed with coeliac disease.

Our Groups has totally cut it out unless there is some special reason a doctor thinks it should be available.

Check this map out:

https://www.coeliac.org.uk/information-and-support/coeliac-disease/once-diagnosed/prescriptions/prescription-policies/

 

[Russ H]

I am in northern England and apparently the GPs prescribe gluten free flour. I want to see if they will prescribe gluten free beer instead.

[Scott Adams]

Maybe only in Bavaria, where beer is classified as "Lebensmittel," so basically "food stuff."  😃

[Russ H]

And they would be correct. I had my first decent beer for many months at the weekend. Local brewery makes a gluten-free ale that actually tastes like ale - Allendale Hop On. Nectar of the Gods.

[SirMakem]

56 minutes ago, Russ314 said:

And they would be correct. I had my first decent beer for many months at the weekend. Local brewery makes a gluten-free ale that actually tastes like ale - Allendale Hop On. Nectar of the Gods.

Name of pub please. I am going up north later for a wedding.