Gone GF but symptoms flared up

[Winger65]

Hi. I’ve had a positive blood test and endoscopy last Friday, so still waiting for definite results but my GP said looking at my bloods, and the fact I have a low bone profile it’s fairly conclusive. I’m type 1 diabetic ( 43 years ) epileptic and have an under active thyroid. My symptoms were never typical - just bone, muscle and severe nerve pain. I’ve gone gluten free now and had an awful flare up in my neck, shoulders, fingers and forearms. Even reading is painful. I’ve read that there’s a clinic in Sheffield that recognises the neurological issues as well as gut ones. Does anyone else suffer like me? My GP is sceptical but my diabetes consultant, who’s an endocrinologist said it was connected to coeliac disease. Would going GF like I have cause such a rapid de-tox to cause these symptoms? I’d been eating lots of gluten before the endoscopy. I’ve been told if you’ve been a ‘silent coeliac’ for so long it can cause fibromyalgia? Is that the case? So many questions but I have to wait at least a month for results in my area 😟

[Penel]

Hi Winger

Gluten withdrawal symptoms can vary from person to person. Unfortunately feeling rubbish is fairly common and I would guess that your flare up could be related. It should pass off, but it if it gets worse it’s probably a good idea to check with your gp.

Sheffield hospital do have the neurological specialists. Have a look for Professor Marios Hadjivassiliou, Consultant Neurologist, Royal Hallamshire Hospital, Sheffield.

Not sure about Coeliac disease causing fibromyalgia, but the symptoms can overlap. Going gluten free does seem to help some fibromyalgia sufferers.

Hope you get some answers from your specialist.

[Winger65 in reply to Penel]

Thanks for replying - that’s really good to know. Feeling rough and a bit disgruntled because I assumed I’d feel better sooner, not worse. In bed now! X

[jox1]

b12 absorption from the gut seesm to be a common problem in celiac disease. lack of active b12 will cause various neurological problems one of which could be the muscle issues you talk about. you could try talking first to your gp about testing for active b12. it's a developing area but standard gp tests haven't in the past been available to test for this and just report the total serum b12 - which doesn't say how much is bioavailable. do some googling on this before you see gp and go armed with the printouts - the nhs website itself says exactly what I've said above but stops short of mentioning specific tests. depending where you are in the UK viapath at st thomas' do tests for mma and holotc- both of which are gold standard for diagnosing b12 malabsorption - Google that as well. otherwise as has been said other locations in UK are available as well. Good luck with the testing.

[Winger65 in reply to jox1]

Thank you so much. Being diabetic I’m aware of b12 deficiency but have always been told it’s ‘fine.’ I take a supplement of b complex and I’m due another blood test soon. Thanks for the advice.

[Marz in reply to Winger65]

There will be B12 in your B Complex which will skew results for any tests for B12. You are legally entitled to have copies of all your test results with ranges to help you monitor your progress and check what has been missed 😊 Being told it is fine means it is in range - but where you are in the range is the key to wellness ... check out Sally Pacholok - Could it be B12 ? - The book and the film. Levels are good over 500.

Is your thyroid well treated ?

[WobblyCaroline]

Hi Winger65. sorry to hear that your symptoms have flaired up. The primary reason for a flare in your symptoms I believe (and am happy to be corrected) is that whilst you are eating gluten your gut is inflammed, particularly in the areas where the damage to the villi is done. The villi are blunted but the whole lining inflames and swells in an attempt to mend. This in turn causes swelling around the tight junctions which are located at the bottom of each villi. They are the spaces that are sized to allow the correct sized particles to be absorbed through your gut wall. When you remove gluten from your diet the swelling starts to reduce and the tight junctions reveal that they are not so tight any more... this is what most people would call leaky gut. So when you eat food 1) your villi cannot hold on to and move the food as they should because they are blunted and 2) particles of poorly digested food start to seep through the gut wall and in to your blood stream, making your symptoms much worse. This, I promise is temporary and encourage you to stick with the GF diet diligently. It is only through complete elimination that these symptoms will go. It will take time to feel better but go easy with yourself, as you would say if you had a broken leg. Your body is healing and needs time to do so. Eat whole foods - veggies, fruit, meat, fish. I also suggest not eating anything that is blended, which makes the whole seeping issue easier (I can't eat soup for this reason!). Take a good probiotic, a good electrolyte and multivitamin. We're here to support you.

[Winger65]

Thank you, that’s good to hear. It’s frustrating as I thought I’d feel better quite quickly but my joints are burning and my extremities are very painful. I’d say I feel a bit ‘flu like. Hopefully it’ll go quickly but I’ve no medics to ask for at least a month, so advice here is really helpful.

[Ell17 in reply to Winger65]

Taking extra Vit B1 (Thiamine)100-600 mg a day can help greatly with neuropathy (nerve pain). Taking CoQ10 (or ubiquinone which is bioavailable form) in conjunction with the B1 is even better. And with diabetes (and autoimmunity in general) your CoQ10 levels are going to be low. So, it would be good to supplement because it's also important for heart health. Also, taking natural Vit E (mixed tocopherols) 400-800 IUs daily is excellent for the blood flow in the tiny blood vessels in your eyes (vision being a great concern with Type1 especially.)

*Note: Vit E is excellent overall for keeping blood thinned and moving freely.*

Gluten can definitely cause neurological symptoms. I have several autoimmune diseases, Celiac being one, but even with them optimally treated I still suffer bouts of Chronic Fatigue and Fibromyalgia. Once your immune system calms down (3 months, barring another exposure to gluten) your Fibro like pain may subside. (It may also serve as a personal indicator for accidental exposures in the future.) But, it could be that you also have Fibromyalgia on top of everything else....As autoimmune issues go, it seems you can't have just one

**But, something to bear in mind is that an undertreated thyroid can cause symptoms exactly like Fibromyalgia. And auto immune thyroid disease (particularly Hashimoto's) commonly affects people with Type 1 (autoimmune) diabetes. **

As for the Fibro pain, here are a few things you could try:

*Extra long heating pad (I never turn mine off...couldn't function without it)

*Freezable gel massage roller (Amazon)

*Soft, fabric like freezable gel packs

*Ibuprofen (sparingly/as needed)

*Stretches (from Physical Therapist...very helpful)

*Essential oil mister or burning incense for overall relaxation

*Wild Lettuce tincture (effective for pain) -- (Amazon)

*Rx muscle relaxant like Flexeril (or the generic Cyclobenzaprine) is effective and affordable. It is prescribed frequently for the muscle pain/spasticity of Fibromyalgia.

Hope some of the suggestions help you out and that you're feeling much better soon.😊

[CATRYNA49]

Yes, your symptoms are very much like mine when I went GF, 8 years ago. It's detoxing which is basically withdrawal and can be quite painful on the level of a bad case of the Flu. Mine went on for several weeks with also cravings for wheat. All total it lasted a month and was about as miserable as when I went through alcohol withdrawal decades ago as an alcoholic. More than likely you also have Hashimotos, which definitely would have to be addressed through meds or diet. On the subject of B complex, most B vitamin supplements are artificial which will cause havoc. Make sure your B12 and especially your folate (not folic acid) is along the lines of Methylcobalamin and methyltetrahydrofolate. If youR pain is Fibro, I found that a combination of Bovine Colostrum, Wobenzyme and MSM eventually helped my Fibro to go away. I have been Fibro free since 2002. I still suffer from Hashis, Celiac and DH and pain from Cipro poisoning. Also, make sure there is no Polysorbate 80 in anything you drink or eat. A recent ingestion of that god awful stuff set me back on my ass for a week. I also had IBS for most of my life and was able to cure it a year ago by eating 8 to 10 cannabis leaves each day. I still eat 5 or 6 leaves each day, just.....because....you know,...... healthy eating helps a lot.

[Winger65]

Thanks both. It’s helpful to know I can beat it and it’s not met with ‘I’ve not heard of that symptom?’ X

[bookish]

Can I recommend 'The Gluten Plan' by Micki Rose and her website, particularly purehealthclinic.co.uk/the-.... Lots of helpful information. Best wishes

[FionaGFG Administrator]

Hi it sounds like you're having a hard time. It won't last forever! When I went GF many moons ago after diagnosis I had killer headaches, fatigue, sleep issues and low energy. Classic carb withdrawel. If I'd have none that I'd have had a final garlic bread and pizza and gradually excluded GF foods over a week or two. However, I'd also add about 3 months ago I was racked with burning knee, back, shoulder, neck pains. Paid privately to see a Rheumy who mentioned Psoriatic arthritis and EDS (Ehlers Danos Syndrome). GP did a panel of tests and all came back 'normal'. Apart from inflammartory markers they cant do at GPs only at hospital. I still have no idea over what caused it and why I felt so awful. Maybe it was flu or a virus? Maybe an inflammatory response to breaking my elbow and having metal pins put in over the winter (still having Physio now!). Who knows. I am cutting back on all processed GF foods and sugars and that is definitely helping. Plus I'm taking my thyroxine (for Hashimotos thyroid) more regularly. I'd recommend you be kind to yourself and try and eat simply and naturally GF at first as it makes life easier. If eating out get the manager of a venue to oversee food and try and stick to places initially that have CUK accreditation - as they should (but always!) be better than random venues without the coeliac training. Keep hydrated and do chase bloods. They should only take a week. If you didnt get calcium, iron, Vit D, B12, thryoid, magnessium and potassium on them do ask for a repeat. Often being at the lower end but 'normal' in these can have a big impact. Esp ref Vitamin D which is really a key one for the whole endochrine system. I was 15 severely deficient at dx and no one told me til I was hobbling around like a 90 yr old, getting cramps and aching all over. Good luck and keep asking Qs the group is a font of collective coeliac knowledge and experience!

[Marz in reply to FionaGFG]

Hi - I couldn't help noticing you mentioning you are now taking your Levo more regularly How much are you taking ? Am happy to look at any thyroid results to see if any tweaking may help ... Very important to give the body a steady and regular flow of important hormones.

You are so right about VitD which is good at 100 plus - B12 at 500 plus and Ferritin and Folate mid-range ... How much D3 are you taking ?

vitamindcouncil.org

grassrootshealth.net

Magnesium - could that be missing ? Needs to be taken when supplementing VitD - also VitK2-MK7 is needed.

[jox1]

.....and to add one more thing - when I've been suffering in the stomach from being glutened I've found that l-glutamate (available as a powder) almost immediately takes away that feeling of being punched in the stomach that I get from gluten

[knitwitty]

Hi I have only just seen your post, Professor David Sanders has written a fantastic book about Gluten and all its effects on the body.

He is a Professor of Gastroenterology at The Royal Hallamshire Hospital Sheffield. At the time of writing the book ( published in p'back 2016) he ran the UK's leading clinic for gluten related problems, he is also internationally recognised as a leading light in gluten related problems and coeliac disease.

As someone else has mentioned Sheffield I thought you might be in the area, it might be worth asking for a referral to see him if he still runs that clinic.

good luck!

[Winger65 in reply to knitwitty]

Thanks I might! I’m in Sheffield so not far. I’m feeling a bit better now so we shall see what happens. Keep being incredibly tired like never before, but suspect I’m going cold turkey 😊

[knitwitty]

Hi again, just wanted to add that if you do get a positive diagnosis for coeliac disease it may take a while before you start to feel back on form again, especially if you have had it for a while.

My son was diagnosed as coeliac following almost 3 years of being ill and fobbed off by both GP's and specialists, sadly we don't live anywhere near Sheffield.

He had just left home to start University following gut problems for about 18 months, he became so ill he had to defer uni for year and it was only when he returned the following year and became more unwell again that another GP joined the dots and suggested that coeliac might be a reason for all his problems, he had supposedly been tested for coeliac at least twice previously but that's another story!

He is now well on the road to recovery but it has taken a long time, and he has been completely gluten free for about 2 and a half years, we expected him to start feeling well immediately he stopped eating gluten but it can take a while for your gut to recover.

He takes B Complex vitamins, a B12 spray which avoids the gut and improves absorption also a Vitamin D spray with K2 as he was borderline for osteopenia, he takes magnesium too.

I thought for ages that he would never feel better but he's just spent a year abroad ( something I though the'd never do) at a foreign university and he is getting his mojo back, I just wanted to reassure you that it can take time to feel properly better, you have probably been undiagnosed for a long time and you will have to be kind to yourself as you are recovering.

[m0ezp]

Hope your symptoms sort out soon!

Be aware that there is some controversy around the definition of “gluten-free”. For example, many get gluten reactions from gluten-free beer. It’s a long and complicated story as to why but I would avoid anything that starts off from wheat, barley, rye even if it’s been treated to come below the 20ppm gluten limit which might include your bread, cereal etc. I never touch grain based spirits or malt vinegar either despite what they say.

Good luck 🍀