Gluten Free Guerrillas
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New here, hello!

Hello everybody,

I joined up today after a GI consultants letter arrived this morning!

I am hypothyroid and have a fatty liver. Various GP’s and 2 consultants have been trying to find a cause for my chronic belching (50 times a day ish) and abdominal pain which is in the small intestines and duodenal area. Also very loose BM’s about 3-4 times a day. Gall stones ruled out on ultrasound and CT scan just showed swollen lymph nodes in mesentery. Poo samples fine but bloods showed severe vitamin D deficient (25), b12 and folate very low normal range, ferritin fine. I’ve given up alcohol and lost 16kg but that was deliberate on advise from GP to improve liver.

IBS and dyspepsia suggested but CT suggests inflammation so am now due to have gastro endoscopy on the 2 week protocol. The letter I had today specifically recommends the D2 biopsy which I googled tests for coeliac, is this possible? I had severe campylobacter food poisoning last summer so wondering if this could have triggered it? My last question is should I try giving up gluten now or wait til after endoscopy?

Any advice or opinions would be really welcome! It’s taken 7 months to get this far and it’s really getting me down. I barely sleep and have ended up on sertraline for anxiety.

Thanks everybody and hope you all have a good day

Becky x

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Hi Becky,

You must not remove gluten from your diet until all tests for Coeliac Disease are completed - and this includes the endoscopy. If you do it is likely to affect the results and give you a false picture of what is happening.

Coeliac Disease is an autoimmune condition. The body's immune system decides that gluten is the 'enemy' and attacks the lining of the gut in response. No gluten in the diet means the damage heals and will not be evident during endoscopy.

The same is true for the initial blood test. The body only needs to make antibodies to gluten if you are actually eating gluten - and it's the antibody level which is measured.

Do however get support to have the multiple vitamin and mineral deficiencies you already know about treated. This will not have any influence on any Coeliac test you may undergo but will definitely make you feel better.

Good luck!

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Were you tested for thyroid antibodies at all?

There seems to be a strong link between auto-immune diseases, so if you have Hashimotos, you have a higher chance of also having coeliac disease. Even if you test negative for coeliac disease, you may still benefit from going gluten free. Around 75% of people feel their thyroid symptoms improve from cutting gluten out of the diet.

Do keep eating gluten until after your endoscopy though.

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Hiya

I agree. Dont tamper with your diet yet.

Yes, they can sample for Coeliacs during an Endoscopy. The procedure is not bad. You can have a throat spray, very strong which works ok. Dont believe ‘em that it tastes like something. It does not, just strong. You can also get an IV relaxant if you have a problem. They want to do spray cos its quicker ( like 2 mins) so production line goes faster, but speak to your GP who shd give you a letter of support for IV if you want it. NOTE your immediate memory is affected so have someone with you who can understand when they come out to tell you the results. This may not happen, depends on hospital, but ours draw diagrams etc but you wont remember anything if on your own. You will feel fine, drug, so you need chaperone and their faculties.

I found great benefit in taking Vit B. Now have monthly booster capsule, but take my own caps too.

Vitamin B12 essential to me. I self inject B12 bought abroad over the counter! Yes! Brain, energy lots of benefits but see what your doc says re low score on blood test.

I had similar to you.Massive bloating etc. After CT which only showed Diverticular disease, I went Gluten Free. Not looked back. GP not interested, she didnt have symptoms so took control myself. This is not a dangerous decision. It is a life choice. Be prepared to sample products out there. They vary greatly. Some bread good, others naff. Can be more xpecsive but remember rice as carbo and potatoes. You can get gluten free pasta so lots of goes-with for meals. READ LABELS. Even roast parsnips can be covered in flour!! You get used to it if you are committed to it.

Good luck Becky

Hope this helps

⚽️❤️

PS I must add. Have you had Intrinsic factor test?

Intrinsic factor enables Vit B12 to start break down of food so nutrients can be absorbed. Without IF and insufficient B12 can give similar symptoms to Coeliacs. X⚽️❤️

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Just had a call asking me to come in for endoscopy tomorrow morning! Great I don’t have to wait too long but I’ve been avoiding bread, pasta cakes and biscuits etc recently as I knew it’s best avoided when hypothyroid anyway. Not strictly gluten free though and very definitely lots of symptoms. Oh well, too late to do anything about that now!

I think I’ll ask for sedation, I have a very strong gag reflex, can’t even tolerate chewing gum! Will take husband along too.

I’ve not been tested for thyroid antibodies I don’t think. And not heard of intrinsic factor. I take vitamin d3, vitamin b complex and magnesium as well as prescribed medications.

Feel I’m starting to get somewhere. I think regardless of result tomorrow I’ll try strictly gluten free.

Thanks for responses everybody. It’s reassuring to have a bit of support. I’m tired and fed up, and suspect hubby is bored of my moaning now too!

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Hope it goes well.

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Hope today goes well. A coeliac diagnosis can seem scary but if it is that causing your health issues you should feel a lot better relatively quickly.

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Have you considered H Pylori.? This spiral shaped bacteria alkalises the stomach and alters the gut pH. This the creates a malabsorption issues affecting Vitamin B12 and minerals such as Magnesium absorption.

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Well it seems I have a hernia which could explain the burping but definitely not all the pain. Otherwise it seems things look normal. They took the biopsies anyway so I’m assuming h pylori should come up if it’s that. Around 2 weeks for results so it’s still a mystery until then! I think if biopsy normal I’m going to end up with colonoscopy next.

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Good luck with the interventions Beckybexx, let’s hope you get a definite answer soon as to what’s causing it. Google castor oil packs = they might be helpful for the gut wrenching pain.

Best Wishes

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Take sulphites out of your diet and see if that helps..

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Thanks, what sort of foods contain sulphites?

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That was lazy, apologies! Just googled. No more dried fruit, that was my treat! Seems I need to stick to raw and fresh only. Might continue with eggs as we have chickens and they are meant to be liver supportive. Goodness this is all a minefield.

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