Gluten intolerant?????

[hazeljane]

Hey everyone,

I'm hoping to get some valued information from you all. I'll try to keep this as short as I can. I have hashimotos and it am currently being treated with a t3/t4 combination. My levels for the 1st time in 2 years are "as they should be". But I still feel terrible. I have read that going gluten free would be beneficial for my thyroid but I'm wondering if I'm actually gluten intolerant.

I was tested for coeliac disease a year ago and it was negative.

Here are a list of my symptoms...apologies in advance for TMI lol

- constant fatigue

- joint pain

- heaviness in arms

- tingling / pins and needles in hands and feet

- craving everything I shouldn't ie bread, sweets, biscuits etc

- gaining weight

- terrible gas especially after eating (sorry tmi)

- sharp pain under left breast after eating

- very bad sinuses

- constipation and very smelly when I do go (yuck I know sorry)

- mouth ulcers

I'm also suffering from high anxiety and bouts of depression which I never suffered from before.

I have pernicious anaemia too.

All opinions are greatly appreciated...and help on what to ask my GP would be great. Should I get an allergy test????

Thank you all

[Castlepoint]

Hello Hazeljane- I too have hashimotos & fibromyalgia & I have had very similar experiences to yourself. I have suffered with stomach pain , gas, indigestion & even started with a very itchy rash on the base of my back. Had two recent celiac tests which both negative. I have now taken matters into my own hands & been gluten free for 2 months. I cannot tell you how much better I am it's amazing, I was getting to the stage of not being able to eat much at all cos my stomach would react to everything. Now I can eat curries, beans anything really! You may want to try it for yourself & maybe keep a diary. I have been referred to a gastro , but there is no way will I go back on gluten for tests now! Take care and I hope you get answers. I am 53 & female may I ask how old you are?

Castlepoint

[hazeljane in reply to Castlepoint]

Hi Castlepoint,

Many thanks for your reply and sorry for the delay in getting back to you. I'm a 30 year old female and my diagnosis of Hashimotos came after the birth of my 2nd child in Oct 2012 (tsh >150 t4 2 ) I was desperately sick and eventually thanks to a wonderful GP I just "happened" to come across she had the quick thinking to take a blood test as apposed to telling me I had post natal depression ever since my diagnosis I've been waiting to feel better but it's yet to happen...in fact there are certain symptoms that have only gotten worse and as a result my mind is doing over time and I anxious and if I'm honest I'm terrified.

When I think back even to my childhood, I remember always feeling sick if I ate too much bread...I had an endoscope at 12 years old for stomach pain etc. but like everything you just soldier on lol However over the last year or so it's getting too much. So today is my first gluten free day it was hard but I'm hoping, like you, it'll be so worth it.

Thanks a million

Hazel

[sallydogsmum]

Hi Hazeljane, welcome

You will get a lot of knowledgeable information from this site. My contribution is based on experience only. I too tested negative for coeliac, my first (known) autoimmune disease was/is RA. I had all of the symptoms you list but mostly had diarrhoea rather than constipation and iron deficiency aneamia rather then pernicious.

I went gluten free over three years ago. It was a slog, it can be difficult, but it changed my health dramatically.

Now, things are much improved unless I get accidentally glutened.

Some of your health issues may seem a little remote from the expected coeliac reaction, but they're not. Many people gain weight as they're desperately trying to absorb nutrition, and the craving carbs is a well known link to gluten issues. I had it, it was odd as I don't really like bread, but couldn't stop eating it. The anxiety/stress issue is also well known, and anger can affect many people too. It's not really just about bowels, but they do tend to dominate your life if you suffer. Some people are diagnosed without bowel problems, some only have bowel issues, some have it ALL........................;(

I'm not sure what allergy test is useful for CD, it's usually the blood tests and biopsy. Sometimes you can be negative and have non coeliac gluten sensitivity. Perhaps it's time to revisit your GP and discuss CD and NCGS with him/her. However, do remember, they don't know everything.

If you decide to go gluten free, it has to be a committed move, no nibbling the biscuits. Research it, and tell your family that things have to change (no bread crumbs, separate toaster etc etc).

Good luck with it all!!

[hazeljane in reply to sallydogsmum]

Hi sallydogsmum,

Thanks so much for your reply and apologies for the delay in getting back to you.

I guess I was blaming everything on my thyroid issues....I've concentrated on that so much and now that I "should" be feeling better and I'm NOT it has me worried. If I'm being honest the fatigue is getting worse and now I have tingling in my hands and feet it's quite scary.

I've made my decision to go gluten free...my partner has said he will try do the same and the kids will eat what they're given lol I'm trying not to put too much pressure on myself because lately when I say "I can't have" all I want to do IS have lol. The craving for sugar and carbs is terrible. It's something I have never experienced this bad. Also, I love a bottle of beer every now and then. If I over indulged at any time in the past I would have a poorly tummy (diarrhea and vomiting) the following day...but the last few times I've had a few beers I've been violently sick....as dramatic as it sounds I feel poisioned the next day and proceed to vomit for days. My last few beers was for Mother's Day (I had 6 bottles over the same amount of hours) and I puked for 4 days until I'd nothing left in me. It honestly took me 2 weeks to recover, along with taking a week off work. Is this part of the coeliac issues???? Needless to say either way beer is OFF my list lol

Many thanks again for your reply it's much appreciated. I'll be sure to keep an eye on here for some useful tips

Hazel

[Thurgolady]

hi Hazeljane - there is a link between thyroid illness and gluten - there is a book that you might find helpful called Why do I still have thyroid symptoms when my lab tests are normal by Dr Datis Kharrazian.

Like you I was tested for coeliac and this was negative - however I had neurological symptoms and neuropathy so was referred to Prof M Hadjivassiliou in Sheffield who is a specialist in ataxia and gluten illnesses. He tested for gliadin (gluten) antibodies which was positive and he diagnosed me with gluten ataxia.

I am much much much better on a gluten free diet and even have had to reduce my thyroxine down to a tiny dose and most of my symptoms are gone.

I would say you are probably on the right lines - your symptoms are so similar to mine even the craving the foods that are full of gluten - this isnt uncommon in intolerances and allergies to actually crave the foods that are bad for you!

BUT unless you are coeliac then most doctors wont either believe there are other gluten illnesses or just think you are depressed or mad!!

If you can get a blood test for antigliadin antibodies and/or TG6 antibodies (transglutaminase 6) these will help get you diagnosed with a gluten sensitivity or the gene test for coeliac HLA DQ2 or DQ8 usually. If you can get an official NHS diagnosis this is helpful and you may get an enlightened GP who will prescribe gluten free products for you. Otherwise just go gluten free properly and find out as much as you can about it. My experience is that I knew after about 10 days that I felt better.

Gill

[hazeljane in reply to Thurgolady]

Hi Gill,

Thanks so much for your reply I really appreciate it.

I find it hard to believe that I could crave something that was in fact making me so sick. I too have neurological issues and I'm seeing a neurologist in 2 weeks time. I'm so terrified because even though if had a relatively normal MRI not so long ago, I'm scared they will say I have MS or something like that. The tingling in my hands and the weakness and fatigue just seems to be getting worse...that said I've been over dosing on carbs etc because I'm craving them.

I'll ask my GP about the tests you've mentioned. I'm from Ireland so things are a little different here, but I'm definitely going to put the tests you suggested to my GP and keep my fingers crossed so thanks a million for that.

I'm just wondering, did you ever experience twitching??? Especially at night time when you lay down to sleep....I also experience a swollen feeling in my fingers when I first wake up but my hands are not swollen at all.

Thanks so much for your reply and support,

Hazel x

[Regalbirdy]

Hi,

My understanding is that if you have been diagnosed with Hashimoto's, then you almost certainly also have an intolerance to gluten - something which most GP's in this country still have little understanding about.

You might want to check out the last few thyroid webinar sessions run by Sean Croxton under the banner of his second opinion series. These have been released today but will be taken down from the Internet on Saturday (10 May) at 2.59pm uk time.

Good luck!

[hazeljane in reply to Regalbirdy]

Hi regalbirdy,

I have just downloaded his seminar, many thanks I really appreciate it.

Hazel

[Thurgolady]

Hi Hazel - you're very welcome. Is there any way that you can get to see Prof MH in Sheffield, England? Most neurologists will not be able to diagnose you - either they dont believe it or dont know about it - similarly your GP is unlikely to know that gluten illnesses can manifest as anything other than coeliac! Its unlikely that your GP can or will do the tests as they are usually consultant only - so your neuro might do them and then if s/he doesnt know about gluten ataxia get him/her to contact Prof MH for advise - or get your results and contact him yourself! He is used to people travelling from all over the world and or contacting him for advise and is open to this.

You need to understand that you are likely to have to educate yourself about this illness and then educate your doctors and push to get diagnosed!

Now as to symptoms - yes I had food cravings like yours, I had dizziness, pains, cognitive and memory issues, terrible fatigue and I also did have twitching - sort of myoclonic jerks while going to sleep and twitching under my eye, I also had tingling in my fingers! I didnt have any classic coeliac symptoms! I kept falling or tripping as well - my balance was awful!

I also have to say please dont expect your doctors to diagnose you without you pushing - my symptoms were many and various and I couldnt see any pattern and I know the doctors thought I was depressed or mad - along with many GP visits and llots of blood tests I saw a gynaecologist, an endocrinologist (actually 2), an orthopod, a sleep specialist, had a glucose tolerance test, brain scan and eventually nerve conduction studies which showed neuropathy and led to a referral to Prof Hadjivassiliou who diagnosed me but only because he is a world leading expert in this condition - dont expect the average neurologist to know about or diagnose this condition without you leading the way!

Good luck, Gill

[hazeljane]

Hi Gill,

Thanks for yet another lovely reply you're very kind...I've contacted the professor in Sheffield and he has mailed me back with a list if bloods to have done before I can arrange to meet with him...all thanks to you so I owe you one

Also, today is only day 2 of going GF and I woke this morning with NO tingling in my fingers, is this possible so soon!!!???? Things like heaviness in my limbs and fatigue is still there but I dont expect everything to go straight away but I'm so surprised there's no tingling in my hands!!!!! My toes just a little....I'm amazed. Hopefully it's not all in my head and a placebo effect.

As for your GP thinking your crazy, well I think I could set up a whole group for people who's doctors think they're nuts lol I know mine certainly does but I'm sticking to my gut on this on (pardon the pun lol) I know something is wrong and I need to get to the bottom of it....thanks to your help and the wonderful advice in here I'm on the right road so thank you

Hazel xxxx

[myrab in reply to hazeljane]

Ask for B12 test, it can be masked with all your auto immune problems. I went for 10yrs, and no-one thought to test B12 until last week and they found I have Pernicious Anaemia as well as many A/I

problems. Start injections this week.