when it's almost healed what to do next? feeling confused and crazy :-/

[fullstop]

Hi. I'm new here. Just discovered this group, i feel at much ease going through posts and seeing people in same boat as me. Here's my story, hope you can understand it, just trying to get it out there hoping some one can relate to it and help me.

I was diagnosed with coeliac disease in April 2013, I am 29 years old. I also suffer from hypothyroidism since birth and have been anaemic and low in vit d and folic acid. doc did a blood test which showed ttg level at 17.9. She said it was high, So she advised me to go gluten free. I struggled alot to begin with, I tried alot of different gluten free foods on prescription and supermarket, nothing would taste edible, i kept retching in disgust, the wheat alternative foods weren't good enough to swallow down . I gave up for few months and ate normal bread and biscuits then I got talking to someone in the doctors waiting room who was also diagnosed with coeliac and she turned her life around by sticking to the new diet, she who gave me reassurance to go gluten free. So this year I stuck to gf diet, I had more of the natural foods like potatoes and rice and brown rice pasta and organic fruits and vegetables for 6 months, doc gave me ferinject through iv line which boost up my iron levels and i take vitabiotics vit d tablets along with levothyroxine 100mcg daily. I had my annual review in April this year, my blood test showed ttg level at 1.2, it had dropped which means I have kept it under control. I saw two docs at the time, both with contradictory views. One I went to just to get my results as my usual doc was on holiday, he said my gut has healed,results show its negative so I'm okay now I'm allowed to eat gluten . I stayed gf though to be on safe side. Second doc i saw a few weeks later, she said being coeliac is a lifeterm sentence I will have to eat gf diet for life or else my gut villi will damage again. She was pleased that going gf made a huge difference to my results after a year . But i told her unfortunately i don't feel much better within myself since going gf, i was supposed to put on weight by now but I'm still under 6 stone. I feel tired all the time, I have stomach cramps and bloating. Brain fog sometimes memory loss i forget what i did yesterday, I get bone and muscle aches pains and legs and feet hurt at end of day,i have excess hair aswell as i have hair fall on my head and dandruff and dry skin aswell. I was trying to concieve for past 6 years, but haven't been lucky, main cause was being very under weight. Hubby says we should wait til my gut has healed fully and i reach atleast 7 stone. Doc said it will take time to feel 100% better, could take months or years, just gotta be patient and carry on staying gf. Omg I did my weekly shop yesterday, I brought a range of gf food from sainsburys this time just to try, but I'm struggling as usual, I have to eat something to get through the day. main thing i miss my my toast Warburton bread and Belmont bourbon and custard creams with my cup of tea, I have tried baking at home but i can't achieve a better taste. Arrgh, So many thing's going on. I'm the only one suffering in the whole family. i have lost my confidence. I read on here I should have had an endoscopy done but doc said there was no need as blood test was enough to show i clearly am coeliac . I Also wasn't referred for a Dexa scan plus i need them to check for any other intolerances. I booked an appointment which is in a month's time, I'm doing some homework research on this and I will push the doctor to do some further tests and help clarify what I must do . I just feel confused and depressed..... I thought by sharing on here someone will help me

[Regalbirdy]

Hi fullstop,

Nice to hear from you. You may be confused, but you're not crazy.

17.9 is a fairly modest result for a tTG test IMO (albeit still a positive one). They stopped counting mine at 128 - and they don't know how far beyond that I actually was! My understanding is that a normal/negative result is 10 and under.

Adjusting to being gluten-free is quite a rollercoaster of emotions at first; and I also admit to finding it quite tough in the beginning. Having depression is often a symptom of coeliac disease, so don't be afraid to ask yor GP for counselling if you think you need it. It certainly helped me last year.

Having CD is isolating because you're not eating a 'normal' diet anymore. There is often a sense of loss for the foods one has had to give up (e.g: no Maltesers, Quorn, Warburtons or donuts etc. ever again). That's a bit of a mind bender and the cravings can be horrible, but it gets easier tho - promise! It's quite embarrassing in restaurants having to give the waiting staff the third degree about what's GF. Friends and family also have to adapt, so there is the education factor in that quarter as well. And that's before you begin to look at labels on packets! That can be so confusing at first. I put on a stone in the first six months or so, trying out all the different GF foods to find out which ones I liked. I found it was a necessary part of the process of going GF. Some didn't suit my stomach and others as you have said, were pretty gross!

In my experience my GP was very good at diagnosing coeliac disease. After that it gets more interesting; I've pretty much had to fight and/or push for much of my follow-up care in one way or another.

However, remember that Coeliac disease is for life, but it doesn't have to be a life sentence. It just takes a bit of getting your head around.

The doctor who told you you could go back to eating gluten should have checked his notes and seen that you had been diagnosed a Coeliac. One hopes if he had done, his advice would've been very different. In order to stand any chance of regaining better health you must stay gluten-free - permanently and totally. No falling off the wagon - ever! Trust me, its not worth it - it's much better to feel well.

Feeling well though may take a little more time. 18 months on from my diagnosis I am still sorting out a number of vitamin and mineral imbalances caused by having CD. However I do feel a lot better than I did. Hang in there for now!

It really does sound like you need to go back to your GP and get more blood tests done. Getting your B12 checked would be my first thought. Mine was low in the beginning and I now have injections to keep it at a healthy level. Don't let them fob you off with the taking of supplements for it. Unfortunately I had to learn that one the hard way.... (B12 supplements didn't work too well due to poor gut absorption).

If you haven't had your vitamin D checked in the last six months I would get this retested. My understanding is that (in my area at least) under 30 is deficient; and 75+ is the desirable level to be at. If the GP is struggling to achieve this for you, ask them for an Endochronology referral.

I would strongly recommend that you start asking for the exact results for your blood tests. I can't stress this too much. I no longer accept the phrase 'it's normal' - I now ask for the details, so I can understand what's going on. Learn to make your own judgements on what levels are right for you and negotiate - big time! In my experience the GP involved has been right only a little more than 50% of the time. You have to become an expert on you. In the process of doing this you will also become a detective and probably an expert on vitamins and minerals.

Do get a GP referral for a DEXA scan done as soon as possible. You already know you're having issues with your vitamin D, so you need to know what state your bones are in and whether you should be taking calcium supplements.

It may also be worth asking to have your cortisol levels checked. Because you have thyroid problems, vitamin imbalances and coeliac disease; it's possible your adrenal glands could be struggling. If you decide to go down this route, remember this blood work has to be taken before 9am.

Others I'm sure will give you more advice then I can regarding your thyroid needs.

There is much more I could say but this post is now too long already...!

Look after yourself.

[RoseRed in reply to Regalbirdy]

Hi, butting in here but I was told after an endoscopy that the biopsies were in the "normal range". I'm seeing a different consultant in a couple of weeks as the DH and CD symtoms have worsened considerably. When I have asked for actual numbers gps and the first consultant just fobbed me off. I think I need to get more pushy.

[Regalbirdy in reply to RoseRed]

Butt away...!

I was getting fobbed off as well.

When I realised that being fobbed off just made me frustrated, powerless and brought me no improvement in my health, I started to wise up. It is with some sadness that I've accepted the need to be pushier; but at the end of the day, if that's what I have to do feel better, then so be it.

I startled my GP slightly yesterday - by telling her I was in charge of my health and would make the final decisions! However I did also go on to tell her that I was grateful for her help and advice.

Good luck with your consultant.

[Pink_Bear]

Some of the symptoms you describe sound as if they could possibly related to your hypothyroidism rather than Coeliac i.e. brain fog and muscle aches etc. Could I suggest you get your latest thyroid blood test results and post them on the Thyroid UK site of Health Unlocked and ask for advice? There are a lot of very knowledgeable contributors there and I feel sure you will get some good advice.

[weee]

Hello Fullstop. Sorry you have to be here but welcome anyway. It's a lot to get your head around and there is so much information to take in. But you will. I have been diagnosed for almost 12 years now and its a bit like second nature to me. Saying that I still get anxious and frustrated when eating out, some people look at you as if you're such a pain to be asking for gluten free food. I always stress that if I eat gluten I will be really really ill. If I have any doubts at all I don't eat there, I have been made ill too many times to take risks.

I am also still struggling with the weight gain..I slowly went from a size 8-10 to a 14.. But I'm dealing with that though the new wardrobe was expensive..

Gluten free food is improving all the time, I remember when I was first diagnosed the bread was foul, it has improved a lot. I also just discovered that a shop near my work get gluten free beer in ..\0/ so I can have a coupel of bottles of beers with the girls on a Friday, or make a lovely beef and beer casserole..

All the best

Ellen

[Hidden]

Hi there full stop, firstly I'm sorry that you're struggling like this and I also think that you need to get your GP to refer you to a Gastro as they are experts on CD. There is a link with hyperthyroidism and CD there is also a link to RA here's a link about RA which affects our joints:

nhs.uk/conditions/rheumatoi...

Now lets look at your situation and your husband is being supportive by saying lets wait before starting a family so he obviously cares and is sensitive to your needs. You have also been told that you need a gf diet so these are all positive things and you now need to get your self well and feeling happy.

In my opinion you could benefit from eating foods that are rich in folic acid like broccoli lentils and chickpeas to name a few and the same goes for vitamin D. At this time of year just being out side in the sunshine is a good way of getting enough vit D but you can also eat foods that are high in it and fish oil is a good source. So I would trying eating main meals cooked from scratch using seasonal vegetables and again speak to your GP about supplements, many members of GFG have vit D injections. In my opinion one of the main advantages of having CD is it gives us the opportunity for a healthy diet based on fresh foods and look how many non coeliac are having issues because of poor diet.

I think that you've done the right thing making this post and by being honest about your emotions and feelings, dealing with negative emotions is a hard one. And my advice is to take life one day and one step at a time and any questions you have about your issues then you're in good company so you just ask away and if you want to let off steam you're also in good company.

And good luck to you,

Jerry

[fullstop]

Hi, just an update. I had an appointment with doc last Friday. I told her my symptoms haven't improved. My weight has dropped further I'm now 5 stone. She said my ttg IgA level is now 1.2 which means my gut is healing definitely but confused over why i haven't put on weight and i get diarrhoea and cramping and nausea after anything i eat. She said i could be reacting to milk products so asked me to switch to goats milk for a while and she asked me to give a sample to test lactose intolerance. Also she will refer me for a Dexa scan. She says i don't fall in the criteria to test cortisol level coz its tested on people who are overweight and with high bp, my bp is 90/73. She said i probably got ibs. Also if I'm reacting to anything i eat then i should go on a gluten challenge for 4 weeks and see how i feel. I haven't ate gluten yet cos im worried i will feel worse. Still a waiting game, once my results come back for lactose then i can decide on filtering out milk products from diet aswell, i feel really depressed sometimes, i have to plan every meal beforehand and although i stuck to gf diet strictly I'm feeling millions times worser.