Mother of all flare ups

[JoeyP]

Please can anyone help me

So under the supervision of my doctor I trialled a Gluten Free Diet for the last 6 weeks. This was in an attempt to quell some of my autoimmune symptoms.

I have Hashimotos thyroid disease and have been treated with Levothyroxine 100mg for the last 20 years. I have suffered IBS for many years too with ongoing digestive issues.

Check up yesterday with doctor for blood results showed my thyroid levels starting to go hyper instead of hypo according to my GP. Could this be the GF effect ?

However my autoimmune symptoms including joint pains, brain fog, depression, diarrhoea, insomnia and fatigue have significantly improved gradually over the last 6 weeks so I can confirm that going GF has had a positive impact on my life.

Energy levels improved ,I am sleeping better, brain fog and low mood has lifted and my stools are formed and regular. The joint pains in my feet, ankles,knees and elbows continue to plague me regardless.

A rheumatologist referral for these symptoms in January ended with him deciding that I had tennis elbow and post menopausal Arthralgia and should increase my exercise and consider physio!

So back to the drawing board with more blood tests and consultation with my conventional doctor. As autoimmune diseases are linked , my GP suspects Inflammatory Bowel Disease or Coeliac because of my symptoms.

So I have to include Gluten back into my diet for another 6 weeks for the antibody blood test . I am also going to provide a stool sample for a Calprotectin test . This will be 6 weeks of unleashed hell if last night was anything to go by !

For the last 6 weeks my symptoms had started to settle down but in order to re introduce Gluten I had to take a leap of faith . The consequences were horrendous after ingesting 2 slices of wholemeal bread with my supper last night.

I went to bed at my usual time at 10 O’clock . After tossing and turning with grumbling stomach pains, sweats, random joint pains, tingling sensations, itching scalp, runny nose and sinus type headache I finally got some shut eye after looking at my watch for the last time at 2.27am !

Woke up at 6 O’clock this morning feeling fearful ,anxious and generally rubbish from sleep deprivation.

Wish that I could fast forward the next 6 weeks 😢

[Penel]

Sorry to hear that you having problems with your health.

It is most unfortunate that you doctor did not have you tested for Coeliac disease before suggesting you try a gluten free diet. There is not a great deal of knowledge about Coeliac disease amongst most doctors, so it’s often a good idea to have a look at the Coeliac UK website to check for advice.

coeliac.org.uk/coeliac-dise...

Good luck with getting through the gluten challenge, perhaps use the time to eat any old favourites before you cut them out again. Bear in mind that you may test negative for Coeliac disease but have non-Coeliac gluten sensitivity, so if cutting out gluten improves your symptoms, it’s obviously a good idea.

One of my main symptoms of problems with gluten was joint pain, which mostly disappeared once I went gluten free. I’m post menopausal and have found that Pilates has been most helpful in improving flexibility, strengthening my muscles and relieving joint pain. I had to look up Arthralgia, it explains my sleep problems! I wonder if a course of HRT would be useful for you?

If you find that your IBS type symptoms don’t improve, after going gf, have a look at the FODMAPs diet.

[JoeyP in reply to Penel]

Thanks so much for your support. Yes I have seen the website and found it very informative. I do Pilates , yoga and lots of walking but find the joints hurt for days after. Then tummy troubles on top of that makes me feel really awful and depressed. Hope I can last the 6 week trial and get some answers. Interestingly my thyroid was responding better. Have discussed HRT with G P but decided against it. Will check out FODMAPS thanks x

[Cooper27]

I really wish doctors understood coeliac disease better... You're not the first person that a doctor has recommended to go gluten free, to see if it helps, then told to just bring gluten back in, and they'll then test you.

For one, if you're coeliac, reintroducing gluten will cause awful side effects, and not many people manage to keep eating it for 6 weeks.

For two, the coeliac blood test costs the GP less than a tenner, so it's not like they're saving much money!

My personal theory is that if you do have coeliac disease or a strong gluten intolerance, then your gut lining will have been in poor shape. By cutting gluten out, your gut will start to heal a bit, and your body will process your thyroid medication a bit better. You're not hypothyroid if that the case, you're over-medicated, and would benefit from a slight reduction in medication.

[JoeyP in reply to Cooper27]

Thanks for your reply. Yes I was starting to feel a lot better and my thyroid was responding to GF . Hope I can last the 6 weeks and get some answers and feel better again x

[WobblyCaroline]

This all sounds spot on. Thyroid will start to function better when you take out foods that are messing with your hormones through damage to your gut. Reintroduction sounds spot on as well. Sorry that you have to do the 6 weeks. I would be seriously poorly... I'm talking hospital poorly if I had to do that. See how far you can get with it. Try take something to get your bowel moving well unless it is already doing that. You are essentially taking a poison for the next 6 weeks.

[JoeyP in reply to WobblyCaroline]

Thanks for your support. Mine is not so bad that I have to be hospitalised. Just really fed up feeling this way for so long seemingly getting nowhere. Yours sounds awful. So sorry to hear that .Hopefully if I can manage the next 6 weeks I shall get some answers and start to feel well again x

[Suzden]

This is not on! I was told by my doc to eat gluten for at least just so I can. We tested as Coeliac ! When I suffered so bad from eating it in Turkey on holiday I was rushed to hospital and kept in the observation room all day! And told never eat it again by doctors there! Still my UK doc said eat it so I did one day and vomited blood and passed blood when I went to the loo so bleeding internally ! I also swelled up bad , pains everywhere and in bed one week ! Well he can stuff it! Never again ! I am also on a Thyroxine same dose as you . Prob here no one has time for you and big gaps on hospital visits . So I see a Turkish doctor private now when I do a cheap summer holiday, he also has a practice in USA every winter , and in a private hospital in Turkey every summer , and one afternoon there and all tests are done and diagnosis sorted for not much money at all , but worth every penny! I suffered such ill health for for many years having ops , being misdiagnosed! and my internal organs are not good , but now I have a life No thanks to Here , so don’t eat it!! Your body is telling you not to! Why make yourself so ill? A GP is not a specialist he is guessing what to do ! He should monitor your thyroid when your better not eating gluten not tell you to eat again and make you so ill totally illogical ! You do what you want honey , I did ! It’s your body so don’t suffer ! Your in control not him

[JoeyP in reply to Suzden]

Oh that’s awful. So sorry to hear that. Mine is not so bad that I have to be hospitalised. Sounds like you have a good plan going there. Well done and thanks for your support x

[BabsyWabsy]

Hi JoeyP, just a quick thought. If you are over 60, they will not test for calprotectin because current guidelines say that by that age, you will naturally have some inflammation anyway. Your GP may not be aware of this. Mine wasn't.

[JoeyP in reply to BabsyWabsy]

Thanks I am 53 so a little way to go yet. Thanks for your support though x

[BabsyWabsy in reply to JoeyP]

Oops, sorry! That should be OK then.

[Franjanu]

sorry to hear this, have you taken a GI mapping test? I've been Gf for 15 years and wouldn't go back, here are loads of recipes I follow if you need any coconutandwhat.com

[jmjhoh]

Sending you strength to get through the next 6 weeks. Good wishes to you.

[Suit]

It sure sounds like you're doing an awful journey. How's it going?

I'm gonna give you another thing to think about when you're done with six weeks of nightmare: a lot of medications contain gluten that does not need to be labeled. Sometimes they are tested and found to contain gluten even though the manufacturer claims it to be GF.

I found you a page written by someone who has been walking in your shoes.

thyroidpharmacist.com/artic...

If your medication contain gluten, it might be the reason for why you don't feel 100% great after six weeks.

[JoeyP in reply to Suit]

Thanks what a nightmare! So many hidden dangers !

[jox1]

for me wholemeal bread is the most extreme form of gluten! and produces exactly the same response. try other forms to see if you get less response eg white bread or white pastry but take it very slow with very small amounts to start with

[JoeyP in reply to jox1]

Yes I am still avoiding wholemeal bread but strangely white bread has a lesser effect on me . I am having small amounts as you suggest . Thanks for your advice x