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Gazza

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Gazza Newbie
Gazza
Posted

Hi folks, I am really grateful that I have found this section on the forum.

Initially I was diagnosed with ME/CFS last year. I have been bed bound and now partially housebound. I have a myriad of symptoms, too many to post here expcet to say that having read that there are many similarities to Gluten Intolerance I decided that I would try out the diet to see if there was any kind of change before going to my GP and requesting bloods and endo.

I am trying out the gluten-free diet and I have found that I am experiencing some crazy times. Let me explain that. I started the diet about two to three weeks ago, and I found that after one week I was feeling amazingly well. No longer was I experiencing gut burning, I felt more positive and I began to think a lot clearer than I have been able to for ages. Even muscular and joint pains were abating along with the migranous headaches. I even had an appetitie. I am a chef by trade so experimenting with some of the recipes I ave found was no problem for me other than the actual cooking process is so exhausting.

I know I am severly malnuorished because of not being able to eat properly for so long. relying mainly on faddy foods and usually the easiest options. So that would explain to some extent the feeling of exhaustion after minimal activity.

At the moment I am not feeling as well as I was, is it normal to feel a dip after the intial start of the diet ?

There are other factors that may also be contributing to the change in wellness, mainly stress brought on by marital problems that are unconnected to Celiac issues.

After reading many of the post through out the forum it does seem that I will need to go for tests, however I am rather reluctant to as the thought of the endo is making me feel that maybe I wont bother and just carry on with the diet. What would you suggest, test or not to test?

By the by I ahve discovered that Morrisons also do a small range of gluten-free products.

Well there we are folks, the old brain is begining to sieze up now so I will sign off.

Take care.

Gazza

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darlindeb25 Collaborator
darlindeb25
Posted

Welcome Gazza, there is a wealth of information on the internet, lots of very informative forums. Healing is a slow process and yes, you will have setbacks. Our bodies have to eliminate a lot of poisons to get well.

Hope you feel better soon.

nikki-uk Enthusiast
nikki-uk
Posted
Hi folks, I am really grateful that I have found this section on the forum.

Initially I was diagnosed with ME/CFS last year. I have been bed bound and now partially housebound. I have a myriad of symptoms, too many to post here expcet to say that having read that there are many similarities to Gluten Intolerance I decided that I would try out the diet to see if there was any kind of change before going to my GP and requesting bloods and endo.

I am trying out the gluten-free diet and I have found that I am experiencing some crazy times. Let me explain that. I started the diet about two to three weeks ago, and I found that after one week I was feeling amazingly well. No longer was I experiencing gut burning, I felt more positive and I began to think a lot clearer than I have been able to for ages. Even muscular and joint pains were abating along with the migranous headaches. I even had an appetitie. I am a chef by trade so experimenting with some of the recipes I ave found was no problem for me other than the actual cooking process is so exhausting.

I know I am severly malnuorished because of not being able to eat properly for so long. relying mainly on faddy foods and usually the easiest options. So that would explain to some extent the feeling of exhaustion after minimal activity.

At the moment I am not feeling as well as I was, is it normal to feel a dip after the intial start of the diet ?

There are other factors that may also be contributing to the change in wellness, mainly stress brought on by marital problems that are unconnected to Celiac issues.

After reading many of the post through out the forum it does seem that I will need to go for tests, however I am rather reluctant to as the thought of the endo is making me feel that maybe I wont bother and just carry on with the diet. What would you suggest, test or not to test?

By the by I ahve discovered that Morrisons also do a small range of gluten-free products.

Well there we are folks, the old brain is begining to sieze up now so I will sign off.

Take care.

Gazza

Welcome Gazza!! :)

Glad you found your way here!!

I gather you are in England as you mention the supermarket Morrison's??? (I am in London).

I'm sorry you've been so unwell :(

You have my full sympathies as my husband was also housebound and somedays bedridden before his diagnosis of coeliac disease - he was very ill.

You are probably aware that alot of the symptoms of ME are the same as celiac disease.

You mention in your post that you are going to approach your GP for bloods (coeliac screen)/gastro referral.

I should point out that you MUST be eating gluten for the blood tests to be accurate.

If you do in fact have celiac disease you only produce antibodies to gluten whilst you are eating it.

The same applies for having an endoscopy with biopsies. As soon as you go gluten-free your bowel starts to heal and you could end up with a 'false negative'.

Ok, that being said, many, many people on this board have not got a 'formal' diagnosis of celiac disease.

They just know that they feel better being gluten-free!!

Also, sometimes, the blood tests can give you a'false negative' - even if you are on a high gluten diet (my husband had negative bloods but biopsies proved celiac disease)

The down side to not having a 'formal' diagnosis of celiac disease in England is that you are not entitled to prescription foods (which are quite dear as you've probably discovered!) or any follow up care (e.g scans for Osteoporosis - tests for vitamin deficiencies etc..)

The choice is yours.... but if you decide to ask for blood tests you need to get yourself back on a high gluten diet asap.

I should also mention that it can also take quite a while for some to feel any improvement going gluten-free.

Everyone heals at a different rate - but for my husband it was a good 6 months of being strictly gluten-free before he felt any improvement - others feel better within weeks.

Good luck in whatever you decide and I hope you feel better soon :)

Gazza Newbie
Gazza
Posted
  • Author

Thank you for your replies, and many thanks Nikki for what you have written.

The thought of going back on the gluten fills me with dread but it does seem that to get a proper diagnosis is the way to go as I would have a better idea what is going on with me also incase of any further complications that may arise as I get older. I also read somewhere that cleiac disease is also genetic, so for my daughters sake I should get tested I think.

I actually live Wales not England. Hence the North Wales bit. In fact I live about as far North Wales as one could get being that I live about a 100yards form the sea.

ANyway once again many thanks for both your replies and I hope things will continue to improve.

Take care.

Gary

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