Gluten free, but tummy pains back

[Peanut31]

I’m hoping someone can give me some advice.

I’ve been diagnosed with Hashimoto’s and September I went Gluten free.

This helped me no end and my Thyroid results and anti body results also lowered. No medication been prescribed.

I’ve been feeling so much better.

However, I’ve noticed this past week, I’ve had tummy pains, trapped wind, the symptoms I was experiencing before I went gluten free.

A few nights again I was doubled up in pain and the following day my tummy felt so sore.

I thought at first it was perhaps mushrooms being the culprit, but it seems to be everything now.

Once I have eaten I feel my tummy making popping noises and feel so windy.

My consultant said there was nothing further he could do as my Thyroid results had reduced and he was not authorised to prescribe me any medication, basically I thought it was a waste of my own money, as he said by my own research being on this forum and previous advice from this forum I have improved the situation myself.

You guys have been brilliant, thank you.

I do feel a lot better, I am now sweating at the gym (not done this for a long time) my weight is stabilised, and I don’t feel the cold so much (although I still do) my brain fog has gone and I’m not as emotional.

However I am still experiencing muscle pain but it’s now in my fingers and ankles.

Is there anything that I should cut out other than gluten, I am super careful what I eat and prepare my food at home. I’m trying to think what it is, I thought it was my Pepsi cherry max, I have two cans a day, I cut them out with no effect.

I am seeing a nutritionist now as Consultant said nothing further he can do, and as I never want to go through the last 18 months again, I want to make sure I am doing everything I can to help my situation.

I’ve had my blood sugar levels tested which are ok, and I’ve sent off a stool sample (waiting for results).

Any advice greatly appreciated.

Best wishes

[Marz]

Do you have copies of your Thyroid results with ranges on diagnosis - or the latest ones ? If so please post so people can suggest something

[Peanut31 in reply to Marz]

Hi Marz

I had not had a full Thyroid blood test carried out by the Endocrinologist, and from this forums advice, it was suggested that I did this, along with a scan.

see below my full Thyroid then the blood the specialist requested.

September 2017 I had the private blood taken, results below:

Thyroid stimulating hormone 4.34 (0.27-4.2)

Free Thyroxine 14.1 (12.0-22.0)

Total Thyroxine (T4) 79 (59-154)

Free T3 4.1 (3.1-6.8)

reverse T3 15 (10-24)

reverse T3 ratio (17.79 (15.01-75.00

Thyroglobulin antibody 47.0 (0-115)

Thyroid peroxidase antibodies 37.6 (0-34)

Active B12 84 (25.1-165.0

folate (serum) >20.0 (>2.9)

vitamin D 165 (50-200)

CRP high sensitivity <0.3 90.0 - 5.0)

ferritin 54 (13-150)

calcium 2.32 (2.20 - 2.60)

Albumin 52 (34-50)

scan confirmed Hashimoto.

The Endocrinologist requested I had another further blood tests taken before seeing him again and then with my private bloods, scan and the recent bloods we would review the situation. In the meantime I started taken Selenium and had gone gluten free (September) as I was experiencing awful tummy pains, wind, bloating.

I have further blood taken in November 2017, (not full Thyroid)

TSH 1.8 (0.3 - 4.2)

Free T4 16.33 (12.0-22.0)

Calcium 2.33

Vitamin D 117

Vitamin B12 1106

Ferritin iron 81

FSH 5.2

As you can see from the November 2017 TSH results they improved and this is when the specialist said he couldn't help any longer, but now as said in my post I am having tummy trouble again.

Best Wishes

[Marz in reply to Peanut31]

It is possible you may have to consider being dairy free. I know it is never ending 😊 I have/had Crohns for 43 years so am aware that guts are sensitive to so much when off kilter ...

[Clutter]

Peanut31,

If you are optimally dosed on thyroid meds and gluten-free it is unlikely the stomach pains are due to thyroid or gluten. While you wait for the results of the stool sample. Keep a food diary to see whether you can spot a pattern of certain foods causing discomfort and wind. Remove triggers from your diet (one at a time) for 2-3 weeks to see whether symptoms improve and then whether symptoms worsen when you reintroduce them.

[Peanut31 in reply to Clutter]

Hi Clutter,

I'm not been given any thyroid medication, the specialist said as my TSH result had improved so much since going Gluten free, there was no medication to further improve my symptoms, as he had to follow guidelines.

He said that if i started to feel unwell again go back to him, I felt so confused when he told me this as I said I still had other symptoms.

He is on list given to me by Louise, granted this is not a recommendation, but just thought I would mention this so you know I've not gone to someone that doesn't know, or have experience of this.

Best Wishes

[Clutter in reply to Peanut31]

Peanuts31,

What was TSH when he said that?

[Peanut31 in reply to Clutter]

It was 1.8 (0.3-4.2), so my TSH had improved. All he tested as well as TSH was free Thyroxine which was 16.3 (12.0-22.0). I got the impression he wasn’t even interested in my private bloods taken before and also my scan results.

I felt totally let down, but I do feel better, maybe it was because I felt so awful when I started to see him.

Best wishes

[Clutter in reply to Peanut31]

Peanut31,

TSH 1.8 with FT4 16.3 is euthyroid (normal) so you don't need thyroid medication.

[Peanut31 in reply to Clutter]

Thank you clutter.

As always your advice is greatly appreciated.

Best wishes

[SlowDragon Administrator]

In September your B12 was on low side. It was higher in 2nd test. Do you supplement now?

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Would suspect if you repeat bloods again that it might show high TSH again

The test done by endo had no FT3 (extraordinary) and might have coincided with Hashi flare

FT4 was not very high at 16

What time of day was endo test done?

Suspect the pain you are describing is acid reflux due to low stomach acid

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

Treat yourself to another Medichecks test for Christmas perhaps?

[Peanut31 in reply to SlowDragon]

The bloods were taken at around 9am, I arrived at 8am but it’s a ticket system and they take all NHS patients as well.

My B12 was showing 1106 (197-771) In November so the specialist said take one every other day. I decided to take one tablet twice a week.

I still take selenium everyday and vitamin c. I also take vitamin d twice a week = 40,000 IU, as when we got to the required level and I stopped (per his instructions) it dropped.

I’m seeing a nutritionist now but still having tests at the minute. I could have another full thyroid again but, if the consultant says nothing they can do, where do I go.

He did suggest I have a second opnion and I received an email from the consultant, but in the email it said that my current consultant had been very thorough.

I spent so much money at the minute with scan and his fees is it worth it.

As I am sure they will not go against another specialist.

Best wishes

[Jazzw]

Could you have been accidentally glutened? Did you eat out at a restaurant or somewhere where the food was out of your control? Sometimes the symptoms of a glutening can persist a while and often you become temporarily lactose intolerant. Sometimes it’s a question of cutting out dairy for a short while, just until your gut heals.

[Peanut31 in reply to Jazzw]

Hi Jazzw

I did think that and I’ve been racking my brains over this. I’ve not been out even for a drink at a cafe.

I think I’m going to have to cut out dairy, hubby said soon there will nothing I can have 😢.

Best wishes

[Jazzw in reply to Peanut31]

Usually, if it’s just a temporary upset you’ll be able to eat dairy again. So hold on to that...

But equally, make sure your doctor knows you’re having gut problems. Every now and again, these sort of issues are nothing to do with what you eat, and it would be as well to get things checked out.

[Cooper27 in reply to Peanut31]

Have you used a cooking pot or baking tray you've not used for a while that could still have traces of gluten on it?

[Peanut31 in reply to Cooper27]

I don’t think so, I been sat thinking what have I done different.

I can’t understand it.

Best wishes

[Fruitandnutcase]

Could it be that you also have IBS? I cut out fizzy drinks - no more Diet Coke for meant I used to love it. I stick with decaf tea or coffee and water.

Have you had a look at Michael Moseley’s Good Gut Diet book? Ive not really looked at it but his blood sugar diet book was very good.

Sounds like you’ve done really well though so far, hopefully this will just be a blip.

[Peanut31 in reply to Fruitandnutcase]

I did cut out my beloved Pepsi cherry max, but maybe I didn’t give it enough time. I have 2 cans a day and I make sure I don’t have any more. I will look at the book you’ve suggested.

I really thought I had solved this Hashimoto’s business and I really embraced this gluten free.

Thanks for the advice.

Best wishes

[SilverAvocado in reply to Peanut31]

I'm sad to say it, but these drinks are one of the worst things you can have Maybe try to cut down to one as a treat at the weekend, or find something like fresh cherry juice or homemade lemonade that you might enjoy having instead.

[OzoneGirl in reply to SilverAvocado]

Don't have any fizzy drinks as 'a treat'!!!

Having just one will undo all the good of not having any for a while!

[SunsetLady]

Hi Peanut31

When I went gluten free l had horrendous stomach pain mid mornings which l eventually worked out was caused by gluten free oates. I'd been fine on ordinary oates before. Even if I had a cookie I would have pain, so l now avoid them and have been fine.

Just wonder if it could be something like that causing your pain

Best wishes

[Peanut31 in reply to SunsetLady]

Thanks sunsetLady

It got to be something like you say causing this, I’m going to cut out my Pepsi cherry max and write a food diary.

I thought it was mushrooms as I had them with gluten free bread for my dinner, and after that I was in terrible tummy pain (I toast bread separately to normal bread), but then I’ve not had mushrooms since.

I’ve not been out either, so can’t blame the cafe or restaurant.

Best wishes

[SunsetLady in reply to Peanut31]

Its tricky isn't it, trying to work out whats causing it. Hope you find out soon, its awful to have pain like that x

[OzoneGirl in reply to Peanut31]

Gluten free bread can cause other problems since you may be sensitive to some of the other grains they use instead!

Often Maize is used as a substitute, which people can easily be sensitive to.

Another one is Buckwheat, which I am sensitive to.

[OzoneGirl in reply to OzoneGirl]

My guess is that it was the 'gluten free' bread rather than the mushrooms!

[Rmichelle]

Just a thought hormonal? my acid reflux and trapped wind iny tummy and back is worse just after a period.

Cross contamination with gluten maybe, does your partner cook for you ? Are they gluten free aware of cross contamination in the kitchen as my hubby is forever digging his knife in the butter container when he has put it on the slice of bread more than once,makes me furious as im celiac. Sympathy is with you as trapped wind is so painful.xx

[Peanut31 in reply to Rmichelle]

I do all the cooking, if I’m late Home he sorts himself out and I do my own food.

This is due to the fact I have always watched what I eat and tend not to eat the same foods, plus he’s made some rare concoctions when we first met over twenty years ago.

You make a good point about the butter knife and your hubbys bread.

I am beginning to think it’s soya now. Before my period I get very windy but I’m not due yet.

I’m like a balloon at the minute, and the Weighing scales confirm this, which is the same before I went gluten free. My tummy still feels sore the following morning as well.

Honestly I thought I had turned a corner going gluten free, and I felt great, but not any longer.

Best wishes

[Rmichelle in reply to Peanut31]

I too am soya free it may help.

[OzoneGirl in reply to Peanut31]

I personally would avoid soya

[EbonyEvans]

I may have misunderstood but did you say he cannot prescribe you anything?

Are you being prescribed any thyroid related meds (Levo) or has it been stopped completely? Apologies if I read that wrong - and not an answer to your actual question but just double checking I read correctly.

Could you have had cross contamination? Eg have you used a toaster after a ‘normal’ piece of bread has been in? A gluten free piece of food that you may have ordered or didn’t think / know had gluten in?

An app I use: Scan Gluten Free UK App for Iphone - Enjoy Gluten Free Livingitunes.apple.com/us/app/sca...

[Peanut31 in reply to EbonyEvans]

No your not wrong about the medication, because my results are now normal he said he can’t prescribe anything.

What’s sad is I spent months feeling awful going to see him paying privately, and all he said what keep having bloods and see if the results improve.

Well they did improve, but it was down to this forum not him, my scan also confirmed Hashimoto’s.

Because my results are normal any medication would make it worse.

I still have muscle stiffness, cold and no tummy pain again.

I have the gluten free app, which has helped. I don’t think it’s cross contamination, but I’m going to write a food diary.

Best wishes

[EbonyEvans in reply to Peanut31]

Hello 👋🏾 Peanut31.

I’m still confused. You’re getting no more T4(?) because you’re back in range?

Or they won’t up the Levo you’re still taking?

I’m asking has your T4 meds been stopped completely? Sorry to seem daft but as I said totally confused 🤷🏾‍♀️

Ebony

[Peanut31 in reply to EbonyEvans]

Hi

Don’t worry about getting confused.

I’m on no medication at all, absolutely nothing.

I was never given anything by the consultant.

He Just told me to keep having blood tests and going back to see him.

I tested positive for Epstein-Barr virus and low in vitamin D and iron. He gave me vitamin D and liquid iron and some anti-viral tablets, I started getting a bit sick of paying all this money just to be told to have another blood test and then see him another month later.

Vitamin results improved greatly now.

I took matters into my own hands, I paid privately for a full thyroid blood test and a scan. Then after bloods went Gluten free.

The consultant never suggested this, it was this forum.

Scan confirmed Hashimoto’s as did thyroid test.

In the meantime I had a further blood test requested by him (not full Thyroid) and my TSH was 1.8, so he focused on this result alone. He said as I’m now in normal range, no medication would help me improve. I argued I still didn’t feel 100%, he didn’t know what to say and said that he wants me to have a second opinion, some consultant in London.

They have made contact with me and said that my specialist has been very thorough, but happy to see me.

At the minute I feel it’s a waste of time and my money.

Clutter has confirmed I am in normal range now as I posted my results earlier this evening, but not had another full thyroid test recently.

I am seeing a nutritionist to see if there is anything further I can do.

Hope above makes sense.

Best wishes

[EbonyEvans in reply to Peanut31]

Hello,

Thanks, yes it does. I was a bit worried that you had been on thyroid meds and once you were in range he’d stopped them. Yes it has happened. Glad that’s clear and sorry I can’t be of much help. I just wanted to make sure we’d not missed anything. Best wishes for your London consult. Ebony

[Peanut31 in reply to EbonyEvans]

Hi EbonyEvans

No you haven't misunderstood me, I haven't been prescribe anything, no levo or thyroid medication at all.

The specialist I saw on my latest visit in November said that as my TSH had improved to 1.8, was originally 6, and as it had reduced there was nothing further he could do.

It was this forum that suggested private bloods for full thyroid, the scan, what vitamins to take and also going gluten free. I believe this helped to lower my TSH. This was not given to me by him.

He wasn't interested in my scan confirming Hashimoto's or my private bloods showing antibodies. He also diagnosed me with Hashimoto's and I tested postivite to Epstein Barr virus.

I went back to my GP in December as feeling really ill and was told it was anxiety and that a TSH of 6 is in range, and that I had been misinformed about Hashimoto's. She ended with if the specialist would not give you anything why do you expect me to.

I did think of cross contamination, but I have not had any bread for weeks. I have been trying to eliminate things.

I'm really missing my diet cherry Pepsi max drinks!!!!!!

Best Wishes

Peanut31

[Marz]

Soya beans are genetically modified in the US 😣 - a small point but as you are watching your food I thought you may wish to know ....

[SlowDragon Administrator]

Positive for EBV means you should be treated

thyroidpharmacist.com/artic...

hypothyroidmom.com/hashimot...

drhedberg.com/epstein-barr-...

drchristianson.com/epstein-...

Acid reflux due to low stomach acid is symptom of being hypothyroid

[SilverAvocado]

I think others have mentioned, but apple cider vinegar might help. I know take a teaspoon or so in water before every meal.

You've probably been told elsewhere, but having thyroid antibodies means you do have Hashimotos thyroiditis. These antibodies will carry on damaging your thyroid so the thyroid function will get worse and worse.

You're in the difficult position of having to wait until it gets bad enough until eventually you will be eligible for thyroid replacement. Many doctors will not give this until the TSH gets ridiculously high. Sometimes having the antibodies can help your case, but they will still go by TSH, and 1.8 is quite an ordinary one.

The only serious alternative is self medication, which means buying your own medicine, interpreting your own blood tests, and bring outside the NHS system. Maybe you're not ready to consider this yet, but something to bear in mind in case you find yourself very ill with thyroid but not getting any joy with doctors.

[Peanut31 in reply to SilverAvocado]

Thank you so much for your reply it’s greatly appreciated as I don’t know where to go from here.

I have decided to cut out the fizzy drinks completely and I have ordered some vinegar apple cider to see if this helps.

What’s really annoying is my TSH levels were bad everytime I saw the specialist, and my vitamin levels were never correct.

I tested positive for Epstein-Barr and also my scan confirmed Hashimoto’s.

In his eyes, it’s was important to correct the vitamin levels first, needless to say I had blood test nearly every month for vitamin levels and several appointments with him, every appointment was the same conversation, I felt dreadful.

That’s was until I posted on here and advised to to gluten free.

The last blood test I had showed my TSH level at 1.8 tests and the vitamins got to the correct levels, so he said he couldn’t help, I mentioned I still feel cold, muscle pains etc and he said there is nothing he could do.

I just felt like bursting into tears. I am now seeing a nutritionist, but my tummy is not right.

I am happy to try and self medicate as willing to take matters in my own hands but I really don’t know where to start.

If I go to my doctors they will not override the specialist.

Best wishes

[SilverAvocado in reply to Peanut31]

Yea, it's hard position to be in, having symptoms but not having the blood tests to get doctor's onboard.

It's really unfair because you're doing everything right, and as a result your blood tests have improved and so now you're not getting help

Epstein Barr is worth following up. It's often mentioned on the forum and can cause a lot of symptoms. Treatments are possible, but I don't know too much about it.

[OzoneGirl]

Stainless Steel contains Nickel, which is a nasty toxic metal!

Only use glass, enamel (which is glass!) or cast iron.