Advice please :)

[hazeljane]

Hey everyone,

I have have a thyroid condition called Hashimotos...I'm sure you all know of it..I'm new to everything and learning daily. I posted on the thyroid uk forum yesterday seeking help and guidance from its members, and one lovely girl recommended I join here that the symptoms I'm experiencing could be gluten related. I have however, had celiac screening and it came back negative is that possible???

Here's a list of my symptoms:

Extreme fatigue

Constant Dizziness - not vertigo though, more "woozy" or off balance.

Tingling and numbness in my left hand and leg, sometimes in the right too.

Really feeling "out of it"

Peeing lots

Neck pain, sore tongue (oddly)

Headaches

Tummy pain - top left just under left breast

Weakness - legs feel like they're going to go from under me

Oh and anxiety/jittery a lot of that

All info / input is greatly appreciated....also what route do I take to go "gluten free"???? This is the unknown for me,..I'm slightly (a lot) scared silly,

Cheers guys and thanks

Just a p.s my thyroid, which was TOTALLY off the scale, is now very much within range eventually.

[Regalbirdy]

Hi,

Yes I believe it is very possible. Besides Coeliac Disease there is a condition called non-coeliac gluten intolerance (NCGI).

It has only been recognised by the medical profession relatively recently, so not all GPs are clued up about it (although shame on them if they're not!).

Gluten can cause all sorts of other issues besides the more recognised gastrointestinal problems. One of these is neurological issues like you have described. It is also linked to an increased risk of thyroid problems.

I am a diagnosed coeliac. As well as a gluten-free diet, I have to have treatment for low B12 and vitamin D levels. Gluten messed up my system to such an extent that I think it was a large contributing factor towards my anxiety and depression issues as well - in my case I couldn't take on board the vitamins and minerals I needed to stay healthy; (as well as having brain fog caused by eating gluten but thankfully this is a rare issue now).

There are a number of books available on gluten intolerance, one of the ones I think you might find interesting can be found on Amazon (other suppliers are available..) and is called Dangerous grains. It's written by James Braly and Ron Hoggan. Definitely worth a read IMO!

I recommend you go back to your GP and discuss and NCGI with them.

Going gluten-free is hard in the beginning but you soon get used to it. Coeliac UK now accept people as members who have been diagnosed as NCGI and is a useful resource even as a non-member.

Good luck!

[hazeljane in reply to Regalbirdy]

Thanks so much for your reply it's much appreciated I'm at a low point in my life at the moment and decided to try get to grips with things myself....I tested positive for parietal (sp) cells a whole back but was told my b12 was ok and within range but I've pushed for b12 injections (thanks to advice of another member) and they begin tomorrow.... I can only imagine how hard it is. To make ""the switch" to gluten free but I think I might just take a chance...no harm in trying it out and seeing if it works right???? I'd try anything at this rate....

I'll be sure too look at the book you suggested, thank you.

Many many thanks

H x

[tmoxon]

Hi Hazeljane

Your post really rang a bell with me, I have been diagnosed with CD and been GF for 2 and half years. I took a list of symptoms to my GP today after thinking long and hard about going to see him as I had got to the point where I was sick of feeling ill. Many of the symptoms are the same as yours, the only ones I don't have is the sore tongue and the tummy pain. It was a GP I hadn't seen before and I went to him as someone told me he had worked in a thyroid clinic and though he might understand auto immune disorders better than other GP's.

I have had blood tests for various things such as thyroid and diabetes but all negative, I have heard others say that the tests are the most reliable but he wasn't interested in giving me any further tests or retesting. He is sending me back to the immunologist and said we may never know why I get the symptoms and after my appointment with the specialist it might be better to go on anti depressants. I don't know whether he was saying its all in my mind. I don't know whether the immunologist is the right place to go back to as when I mentioned the headaches to one of the doctors there he told me to go back to my GP?

I have the fatigue feeling you get and sometimes is worse than others, I am not sleeping a lot, the feeling I have as though I have been drugged. Sometimes when trying to explain things its all a effort. I am conscious of my legs when I am walking as though I have to think about what I am doing. Sorry this doesn't help you very much but just wanted to say that I can sympathise.

With regards to your screening for CD, some people don't make the antibodies required for a positive test and therefore have to have another test, more information can be found here coeliac.org.uk/coeliac-dise.... Scroll down to IGA deficiency. I am assuming you haven't had an endoscopy yet to have a look to see what has happened to your villi.

Also there seems to be more in the press about Non Coeliac Gluten sensitivity, if you do a search on this you will find a lot of information about it. From what I understand it is where you have the symptoms but test negative.

Hope someone has some answers for you and that you feel better soon

[hazeljane in reply to tmoxon]

Hey there,

I can GENUINELY say I know how you feel...have you had your b12 checked???? If you google b12 deficiency or pernacious anemia (sp ) the symptoms seem to fit mine...and by the sounds of it, yours too. I too am VERY conscious of my legs when i walk its like they don't belong to me or something...its hard to explain.

I'll be sure to follow your links thank you and ill keep you up to date. I'm thinking going gluten free may be the way to go...just wondering how long does it take to notice any difference???...thanks

H xxx

[tmoxon in reply to hazeljane]

Hi Hazeljane thank you for your advice. I think it might be a good idea to go GF however before you do I would look into asking your GP whether it could be possible that you don't make the IGA antibodies and enquire whether they tested you for this. If you don't make these antibodies then your test would always be normal. I have had my vit b12 checked and its come back as normal. The other symptom I have which you haven't mentioned is my hair falls out a lot. It appears that you have thyroid problems but think you could have CD, I have CD and thought I had thyroid issues. Someone on here mentioned that the test they give you for checking the thyroid wasn't very reliable, I mentioned this to the GP and he said it was good enough. I don't want to put you off going GF but I cant say that I have noticed much difference in my health, I also have DH which I still have even though I am strict with the diet. I have just read Regalbirdy's post and I tried to explain to the GP that I have read that a lot of people find that their test results are considered normal yet aren't for them, it fell on deaf ears I am afraid. Please let us know how you get on x

[Regalbirdy]

Hi,

A lack of B12 does also account for many of the symptoms you describe, it may not be a gluten issue. I still strongly recommend you should be talking to your GP!

However this may also be of help to you:

I have a friend who was told for many, many months by his GP that his B12 levels were fine.

He kept going back again and again to the doctors because he felt so unwell and has other family members who have pernicious anaemia. Each time he was told the same thing, he didn't have a problem - his B12 levels were normal.

Guess what? Turns out he does have pernicious anaemia - he was right.

Unfortunately he is one of the small number of people whose body doesn't function within the recognised 'normal' B12 ranges! (I can't remember the exact figure but I think it may be around 5 to 10% of the population who also don't fit into the 'normal' criteria).

His advice was extremely valuable to me when I was trying to get my B12 issues sorted out. He encouraged me to keep pushing my GP like you have done.

My range was about two points below normal, so I was told to try supplements. As a newly diagnosed Coeliac, I couldn't absorb enough B12 through my gut even when I took a massive supplement. It wasn't until I went back for about the third time and I begged; that the GP relented and gave me the injections.

Since then things have been a lot easier. Last time around I found my injection ran out at 9 1/2 weeks. Fortunately my injection is scheduled for 10 weeks apart, so I didn't have long to manage in what I call zombie mode.

[tmoxon in reply to Regalbirdy]

Hi regalbirdy I am wondering whether you could advise what is considered normal for B12 results please as I am going to try to find out what mine were the last time I had them taken thanks

[Fisher123]

Hi hazeljane, sorry to hear u feel so poorly. I am diagnosed coeliac and am very well through the gf diet, however my cousin is a lot like yourself . She lent me a book she found most enlightening by Datis Kharrazian, called why do I still have thyroid symptoms? It is pretty hard going but worth the effort. Good luck and I hope u feel better soon And get your life back, much love Ali

[freelancer]

Sore tongue always comes up on the lists of B12 deficiency symptoms. I've got pernicious anaemia and haven't had it myself, but it's a recognised symptom!

[Regalbirdy]

Hi tmoxon,

Sorry I can't remember the range my GP used because it was nearly a year ago (I was told at the time). I just remember my doctor initially telling me I was too close to 'normal' for them to be overly concerned about it.

I also think the range varies and that there maybe a couple of different ways of measuring it used in the uk. Your GP will know though - ask them again when you next go. Don't pay too much attention if you get a look of surprise from them. In my experience they're not used to people asking such specific questions. Also in my experience, such information is absolutely vital in making informed choices and later querying any decisions that you feel need to be reviewed.

My B12 issues were first highlighted in blood test results around last October but the doctors were more focused on getting my coeliac diagnosis confirmed, so nothing was done about it. To be fair on them, at that time it was the correct thing to do - to seek out the underlying cause. I do remember asking my GP about it again in December but got a 'don't worry too much about it response.'

I didn't receive injections until I went back again January this year and had the earlier decisions reviewed.

Grr...! I personally now think that no newly diagnosed coeliac should be told to take B12 supplements for at least the first two years following diagnosis (in my opinion they should automatically be offered injections if B12 anaemia is suspected).

In my case I was diagnosed with total villius atrophy so the B12 injections have made such a difference - within hours of having the first and second ones, I was bouncing around like Zebedee out of the magic roundabout! It was such a strange feeling after feeling so knackered for so long. Last time around it only took 45 minutes for it to kick in. It was that instant. It was like somebody had changed the batteries in my brain!

Good luck!

[tmoxon in reply to Regalbirdy]

Hi Regalbirdy, thank you very much for your help. I have contacted my specialist and they have just rung back, the range on the test they have used is apparently 180 - 1130 and my results were 393. So not sure whether this would indicate that I am well within range or whether I could be one of the people similar to your friend as I don't know what his results were saying. I really cant see the GP who I saw yesterday being interested in testing any further, he has simply passed me back to the immunologist and suggested antidepressants, cant say I was impressed at all. Thanks again for your help

[Regalbirdy]

Hi tmoxon,

Those ranges sound familiar. I think my result was 178.

As for my friend, his lower tolerance level (the level at which B12 anaemia occurs) is well above 180.

Speaking more generally now, if a persons individual range lets say falls between 500 - 1300 (for example), then a reading like yours would mean they were very B12 anaemic. However on the 'normal' scale, they would almost certainly look healthy!

I think eventually my friend had to insist on being seen by a specialist consultant in pernicious anaemia.

My very best wishes - I hope you can get sorted out.

[freelancer]

Hi If it's any use there's a Pernicious Anaemia Society section on HealthUnlocked - they should be able to answer any specific questions about B12.

[RusticRita]

Hi Hazel Jane,

I have Hashimoto's and NCGS (Non Coeliac Gluten Sensitivity). I still suffered many hypothyroid symptoms despite thyroxine meds normalising my blood levels of TSH. These included aches, low energy, brain fog plus many that you mentioned. It was only after going completely wheat and gluten free that I got real relief.

To cut a long story short, there is growing evidence people with auto-immune illnesses like Hashi's often have problems with gluten type grains, wheat being the worst. It's always been recognised that thyroid disease and Coeliac disease often occur together, but as NCGS becomes better recognised more links are becoming apparent. Two proponents of this are Dr Kharrazian, who Ali mentioned and Dr Chris Kresser. I recommend you check out his website: chriskresser.com/three-reas...

Both Coeliac and NCGS can stop your body absorbing/utilising medications and nutrients correctly.

Anxiety can also be caused by the adrenals being under the extra stress of the thyroid not working as it should. I suffer awful anxiety, which has lessened a lot but not entirely. Seems common with a lot of thyroid sufferers. Make sure you get plenty of B vits and vitamin D to support your nerves!

In my experience NCGS is a complete intolerance, in some ways I am lucky because I now get a rash if I mistakenly eat even a small amount of gluten - I even reacted to wheatgerm in shampoo! It doesn't show up in blood tests (although it turned up as initially as a wheat allergy in mine) although inflammation of the blood/system can be a marker.

You would need to stay on a gluten/wheat diet if your doctor intends to send you for an endoscopy as the antibody isn't the definitive test for coeliac. Otherwise you might want to do some further research and keep a food diary for a couple of weeks before attempting to go completely gluten free. It can pop up in all sorts of unexpected things like oven chips and chocolate - unfortunately there are no half measures, its got to be 100% gluten free to really feel the benefits!

Let us know if you need more info. Best wishes, Rita

[Jacks]

As the thyroid gland is so finely tuned it is possible that your Hashimotos is responsible for your symptoms. Like coeliac disease it is an autoimmune disorder. Your symptoms are also similar to peripheral neuropathy, so it may be that you'd like to get checked before embarking on a 'cure' for a disease you may not have (coeliac). If I wasn't a coeliac I definitely would not be on a gluten free diet as it is so restrictive and most convenience GF foods are anything but healthy!

I'd get to the bottom of what's really wrong and if a blood test shows zero antibody production then it is unlikely you are coeliac (unless you were on a super-strict gluten free diet for 6 weeks before the test).

Peripheral neuropathy occurs in many autoimmune disorders.

ninds.nih.gov/disorders/per...

PS My friend has similar symptoms and attributes them to an early menopause!

[nickyr]

Hi there

There are many links between Coeliac and Hashi and although you may well not be coeliac you may well find a GFD is helpful. I have a close friend with Hashi and we researched the condition and found lots of info suggesting gluten may be implicated, she went strict gluten free immediately on diagnosis...her doc told her there was no way her antibodies would go down, they did within 3 months and have never gone back up. I'm studying MSc in nutrition and have special interest in autoimmune being coeliac myself......the gluten links are so strong, if I were you I'd seriously consider going strictly gluten free...or at least giving it a good try...you wouldn't have to worry about cross contamination issues like Coeliac which is the toughtest bit. Hope this helps

Nicky