embarking on the gf diet

[MyTheory]

I was wondering how long it might take before I see any improvement in my symptoms. I was diagnosed as coeliac yesterday and have started my gf diet immediately! Not hoping for miracles but interested in other peoples experiences and how long it was before they saw improvements in symptoms. Thank you!

[nomorebeer]

It probably isn't the same for all people with Coeliac Disease, but I was told I was told I had IBS for almost twenty years before I self-diagnosed and asked the my GP to be tested for Coeliac Disease, the blood test was a very high positive, and it was later confirmed after a biopsy.

At the time, I was skeletal and weighed just 8st 5lb but within three months of going on a strict GF diet, my weight shot up to 12st 7lb, I'm now settled at around 11st 4lb which is about right for my height and frame.

In answer to your question, I actually felt so much better within a week of starting the GF diet.

Good luck, and I hope you start seeing an improvement in your symptoms soon.

[benmaise in reply to nomorebeer]

Hi your story is very similar to mine. I must gave suffered for. At least 20 or more years. I asked a few times if I could have Coeliac. Doctor wouldn't have it. I took a pill called Colofac for 18yrs. I saw the specialists at hospital. They gave me Colonoscopy. They took blood tests. I was 8st. They didn't bother to test me forCoeliac. I asked a couple of times for a t

est. I insisted and they done it. Finally diagnosed when I was 60. I'm 78 now. It took a while to be fairly normal. After about3 months things improved. Good Luck. Won't be long for you I hope.

[liver-bird]

I felt much better within a few days of giving up gluten. However I accidentally glutened myself periodically after this until i learned of all the foodstuffs that contain gluten. This served to remind me how ill gluten made me feel and strengthened my resolve to eliminate it. Good luck with the process

[Regalbirdy]

Hi MyTheory,

There’s not a simple answer to that question, because it depends on what damage has been done to your body systems as a whole.

The good news: you should find that within a few days, you’ll find that many of the gastric symptoms that you’d learned to live with go away.

The next stage is to work out which vitamin deficiencies you might have which are not yet treated; and also the state of your overall bone health.

Unfortunately (in my experience), due to the lack of post diagnosis Coeliac support in the uk, this might require many visits to your doctor armed with the specific questions you want answered. Knowing what to ask for is half the battle!

Some of the main things to get checked straight away include: Folates, Iron, B12 and Vitamin D.

Once these are sorted out, I recommend also being aware that other deficiencies could be a possibility - such as magnesium (I’ve specifically mentioned magnesium because it is needed for every muscle and organ in the body). You might also have a few other smaller mineral deficiencies going on too, although a quality multivitamin will probably resolve most of these.

Also, be on the lookout for additional food intolerances - for example dairy, which is common in newly diagnosed Coeliacs. These may take time for you to figure out, because they will be individual to you.

You are also entitled to a DEXA bone scan to check for osteopenia/osteoporosis. Get one booked in as soon as you can.

Btw, do not underestimate the psychological aspects that your diagnosis may have on you in the coming weeks too. This is also quite normal.

Learn how to advocate for yourself when eating out with family and friends. Expect these conversations to be a little awkward and even embarrassing at times. If someone doesn’t understand how to accommodate your new diet, don’t accept food from them - whether this is in somebody’s house, or in a restaurant. Unfortunately you may have to learn this one from lived experience. It is okay to keep food in your handbag/man bag for such times and for emergencies.

If you have work colleagues, don’t be surprised if they forget that you’re now a Coeliac and wave cakes etc under your nose (eg. because it’s somebody’s birthday). This can be upsetting too, because you’re probably going to want one and to not be left out of this social activity - and they’ll likely not understand the impact it might have on you!

Do get MH counselling support if necessary. Do not give into temptation to eat gluten - EVER!! Your long term health is much more important.

Do also remember to have a separate toaster, new colander and GF wooden spoons etc. in your kitchen. If you live with anyone, then you’ll also need to have separate jams and pots of spreads - and train the people you live with the importance of not double dipping into yours. Read packet ingredients religiously when out shopping, so that you can find the hidden sources of gluten.

As someone else has said, expect to put on weight, and don’t worry about it. Be kind to yourself. One day this will sort itself out. I was warned this would happen by a dietitian (it did - I put on 2 stone!) and like the other person, I’ve also now found a new good weight for me.

Perhaps a useful analogy for Coeliac Disease might be thinking of it as like Covid. Most people recover from having Covid in a few days. That’s not us. Think of having Coeliac Disease as like having Long Covid - it takes a while understand what’s happening, and some changes will be permanent.

If you work, then do consider asking for medium term accommodations from your boss or the organisation’s Occupational Therapy department. I had accommodations made; but in hindsight, made the mistake of not asking for enough changes or over a long enough time frame.

I personally found that getting all my symptoms under control (including the mental health aspects), took over a year.

Being a Coeliac does become normal and even routine. I think most Coeliacs will tell you that they live a very good life.

Finally - good luck!

[CATRYNA49]

It will take a while; weeks or months. You may find that you will go through a detox period, as well as withdrawal symptoms that may last for a while, but will eventually come to an end. After that you will see an improvement. Don't give up, your body is doing what it needs to do, as miserable as it may seem. You will get through it, if you persevere. You will be better off in the long run by doing so.

[nellie237]

Hi MyTheory,

Welcome to the forum. Regalbirdy has given excellent advice.

The British Society of Gastroenterologists recommend the following annual blood tests:-

full blood count,

ferritin,

serum folate,

vitamin B12,

calcium,

alkaline phosphatase

associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),

and serum glucose),146 147

liver disease (aspartate aminotransferase/alanine aminotransferase)40 and

dietary adherence (anti-TG2 or EMA/DGP), although the sensitivity and specificity of the latter cannot substitute for structured dietary interview.

bsg.org.uk/clinical-resourc...

You should also request testing Vit D.

[cranberryt]

Unfortunately I have both celiac and colitis, so my symptoms did not improve with GF diet. However, I can tell you that I had an endoscopy for other reasons three months after starting GF and there was no evidence of celiac at that point. My symptoms are kept in check with budesonide which I take for the colitis.

[MyTheory]

Thanks so much for all this information. It feels daunting but I’m determined to deal with it properly. I had no idea I should also have blood tests and bone scans. I feel that the hospital have more or less left me to get on with it - now I think I should go back to them and ask more questions. Many thanks all!

[Regalbirdy in reply to MyTheory]

Sadly, I’m not surprised that they’ve left you in the wilderness. It was the same for me too.

The reason for blasting through all the info above is to help you feel better faster (I had to figure so much out for myself - and wouldn’t wish the same experience on anyone… 😕).

Btw, Try to watch your Calcium intake too. You may need to consider supplementing it in the future to keep it at healthy levels.

Ps. NICE Guidelines NG20 might help you as well - especially if you get an intractable doctor! 😉

Take care. x

[1Cass]

Thank you for sending the above info Nellie. Very useful knowledge. I haven’t had a check up for CD for probably 30 years and I’m now going to find a specialist. My fibro comes and goes and unfortunately at times quality of life is diminished as with most of us. It’s making others aware of these debilitating issues which would be great xx

[Kernowkris]

lots of good technical advice above which I can’t add to. For me on the psychological side you WILL crave French bread, real pasta and anything with gluten in. Don’t do it!!

The substitute items are not brilliant but they are improving.

[CATRYNA49]

I suffered from Celiac and it's accompanying skin disorder (Dermatitis Herpetiformis or DH) for over 40 years before being properly diagnosed (2011). I also suffered with IBS for that length of time also. When I went GF, I underwent detoxing and withdrawal for almost a month, which was a living hell. Then things slowly began to improve. It was not until 2017, when I decided to go completely grain free, soy free, and low iodine intake that I saw the greatest improvement.

[nellie237 in reply to CATRYNA49]

Hi Catryna,

I can understand being grain/soy free, but as a hypothyroid coeliac I'm curious about the low iodine (ie iodine is an indispensable part of levothyroxine). Areas of the world where there is little iodine intake have high rates of hypothyroidism because the thyroid hormones need it to be able to work....and being coeliac we are at greater risk for hypothyroid & vice versa ???

[CATRYNA49 in reply to nellie237]

You are quite right. Those of us who suffer from Hashimotos along with Celiac and its associated skin disorder, Dermatitis Herpetiformis or DH, we have to walk a fine line. We have to have enough iodine for our thyroid, but too much and it exacerbates our DH. Too much iodine and our skin will react as though we have been glutened. It is a very difficult situation.