Real dilemma. What would you do?

[Footygirl]

Hello all

Went gluten free September 9th, fed up with discomfort and bloating. Felt I may have B12/Pern anaemia too.

Stopped PPI which I had been on for years. By last week, so full of acid. Doc did Intrinsic Factor blood test Friday MMA too. Gone back on Lansaprazole. Went back on gluten Friday evening. Now bloated, discomfort returned and my version of runs, every time I pee, I poo. Disturbing my sleep.

Do you think that is enough suffering to prove wheat allergy if not CD?

Have to ring up for endoscopy apt, with biopsy of top of bowel to prove absolutely coeliacs or not. Coeliac Antibody was negative(!) may have 6 week wait but should I put myself through that over Christmas or just go back GF and be content with that?

Similar with PA. feel terrible. NO evergy, I sit n breathe only. Asking for B12 injections meeting brick wall as usual. Gastro took other blood "indicators" on Friday. I have all signs n symps.

Given I have done my best, ie private Thyroid test to ok thyroid, cos of tiredness, and other detective work, have only these two AI diseases to go. I have 5 others.

Would you say, sod it, back to gf and comfort and self inject and feel better (or not - no harm done) and give rest of investigations a swerve?

Sorry to mither. Brain acuity and neuropathy which are being ignored, really worring me.

Thanks guys for your honest opinions given you are NOT MDs but have more common sense than all of the Muddled Dopes put together.

Love

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[pvanderaa]

I went totally gluten and dairy free without a formal diagnosis of celiac. I've never looked back.

You have to ask yourself, for whose benefit is all the testing anyway? Yours or the doctor?

Start a logbook of all your food, meds, drink and symptoms. There is a 3-48 hour delay between the allergen and the symptom. There may be multiple symptoms that follow in sequence. I.e. Wind after a couple of hours, brain fog after 24 hours, extreme sleepiness, diarrhea, symptoms disappear. This is my typical sequence for gluten or dairy.

It is hard to go totally gluten / dairy free because of cross contamination. I had to basically make a rice casserole with known safe ingredients and eat that for several days to minimize all the variables in my diet.

If I suspected a particular ingredient, I'd eliminate it from my diet for two weeks to completely get it out of my gut and bile.

When I reintroduced it, I'd monitor the symptoms while keeping the rest of my diet unchanged.

I found the gluten symptoms mirror those of my B12 deficiency. There were a set of symptoms that follow the jab in another sequence over 48 hours. I.e. Headache, irritability, bout of diarrhea.

Also regarding your heart burn, if you suspect PA, you may have too low stomach acid. The PPIs just make this worse. Have you tried drinking diluted cider vinegar (malted vinegar contains gluten) . My bedtime drink is: Two tables spoons of vinegar, a slice of lemon, 1/2 cup of apple cider, top up the cup with hot water. It takes some getting used to at first but I sleep well.

[Footygirl in reply to pvanderaa]

Thanks so much for your clear and thoughtful response. Just what I needed. My head was spinning.

Whose benefit indeed. A very salient point. My hubby said the same. I think its life long obedience to MDs. Well, not life long, Ive well and truly rebelled now.

I will certainly write the diary. I will try, brain fog allowing, to back date it. I recognise the sequence of your symptoms from gluten. I have one sign which I did not attribute to gluten before.

I have had a feeling of pressure under my right rib cage with the horrible full feeling. I only realised today that it is back and must be gluten related. Amazing what we put up with. Didnt feel its absence, just its horrid return.

Thanks again for your repky

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[pvanderaa in reply to Footygirl]

You are also posting your B12 questions in the PAS forum, right?

I subscribe to both this one and PAS.

[Mamacpj in reply to Footygirl]

pvanderaa has given very good advice. Elimination of foods and a food diary are the best way to know what is causing your issues. My husband is celiac; however, I eat gluten free (not going to make 2 meals) and I feel a lot better following a GF diet. The pain you speak of below your rib cage may be your gallbladder on top of Gluten. I had my gallbladder taken out 2 years ago and that was how it started for me. It felt like there was a metal bar stuck below my ribs and I couldn't sit. I had to stand or lie flat. It ended up I had 1 large stone compacted in my gallbladder and I am so grateful that it didn't come loose into a bile duct as that would have meant emergency surgery. I have a Gluten Free Facebook page with recipe ideas as well as a You Tube Channel if you are interested in any of my information.

[Footygirl in reply to Mamacpj]

Thank you.

The gall bladder is yet another issue. They found three gall stones in August. I requested their removal not wanting the emergency surgery you describe for either gall bladder or pancreas. Not my baby. See a surgeon came the reply. But will only take out whole thing. I saw Gastro last Friday, she now says your four gall stones are not causing any trouble. Well neither do buses at a stop but if the brakes fail... Stupid logic given my issues. Thanks for that.

Yes Im going over to PAS now because I feel so ill this morning. I am going to self inject and need info.

Appreciate your support.

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[Galixie in reply to Footygirl]

They won't remove the stones unless they remove the gallbladder itself. It's such a thin, fragile organ that it can't really be cut open and sewn back together.

You might reconsider whether it is truly not causing issues. Many times gallstones cause digestive problems.

A gallbladder attack does feel like pain just under the lowest rib on your right side. Sometimes the pain will wrap around to your back. If you are having those symptoms, that is a gallbladder attack. My surgeon explained to me that, once I started having those attacks, I would keep having them until the gallbladder was removed. So I had it removed.

Good luck on whatever you decide to do.

[Penel in reply to pvanderaa]

Perhaps having your drink with a meal would be a good idea?

[Penel]

The decision is a really difficult one, only you know if you really can't continue to eat gluten for the next few weeks before the biopsy for coeliac disease. A wheat allergy could give the symptoms you describe and can be detected by a skin prick test, as far as I know.

Giving up gluten could be a good idea for you, whatever the results of a biopsy. Perhaps have a look at The Autoimmune Protocol by Sarah Ballantyne? It's a possible way to tackle several autoimmune problems and hopefully minimise their effects, with advice on which food groups to eliminate and how to reintroduce them. You can find her on line as The Paleo Mom.

Good luck with getting your health back.

[Footygirl in reply to Penel]

Thanks so much. As you say, only I know but the apt has arrived for 20th December, ridiculously early as I went back on gluten on Friday, but I will be a good girl and suffer, looking forward to a gf Christmas, now THAT is a present. Yes, regardless of test I shall go gf again.

If my new GP is amenable I may ask for allergy test anyway to clear up any background problems too.

I shall seek out the book asap. Knowledge is power. edit hmmm those pesky leaking guts again. i dont know???

Thanks for your good wishes. I hope you are well

Regards

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[Fruitandnutcase]

Couldn't agree more with pvandera and your other half - if you know you are better without gluten who are you testing for?

I've never tested although my rheumatologist offered me a test a few weeks ago. I said no thanks because it would have meant eating gluten again after a year of none. Besides I'm not sure blood tests are always reliable.

Hope your other tests get you your B12 injections. If they say you are within range get yourself some Jarrows sublingual B12 - there are two strengths and the stronger of the two really brings my B12 up. I started because I have a family history of PA and when I was finally able to get tested I was just inside the lower end of the range but was told that was 'fine' *sigh* so I sent off for my own, built my levels right up and have got my own private tests done ever since.

Hope you get sorted out very soon. It's no fun feeling lousy and having to battle with doctors at the same time.

[Smartdoc]

Hello Footygirl,

Hey I am just struggling to adapt to a gluten free diet that has to be very strict. I am a retired GP, with an open mind. I never had 1 formal complaint throughout my career. I had to retire due to Parkinsonism, that I diagnosed myself, it was missed by the consultant neurologist. I lived with the symptoms for 3 years. Until I had had enough, identified the specialist who I wanted to see and asked for private referral through my sceptical Gp. I saw the specialist who diagnosed Idiopathic Parkinsons. Idiopathic means literally of unknown cause ! Well several years later and with several other symptoms I stumbled on Non Celiac Gluten Sensitivity. This is a well recognised condition, and the symptoms you describe are similar to those experienced by myself .For what its worth medicine is a very inexact science and really very hit and miss. You unfortunately as I have found have to be your own advocate.

With NCGS all the current available tests are likely to be negative. Really dont put yourself through hell and back by eating gluten it isn't worth it.

I am going through the hugely steep learning curve at the moment, I have found it difficult to get good information in the uk. Also Coeliac UK are prone to poor judgement and trust manufacturers of food too much.

I am going onto a whole food diet ie no processed food , until I get better. Then I will gradually introduce 1 by 1,each thing with great care . I have found that using gluten free food labels does not work, even split wheat symbol is hit and miss! Made the mistake of eating Asda walnuts, that have a may contain that mentions nothing about gluten. Having googled Do raw nuts contain gluten, I found out that very few brands are free from cross contamination.

It appears that gluten is very sticky stuff!

Same goes for around your house .Look up American videos and websites, America has much more advanced practice.

There is a very good article in BMJ, I discovered recently,it sums up everything.It was written way back in 2012. If you google "non celiac gluten sensitivity uk.