No Diagnosis Help - Apologies For Length Of Post

[nwblue]

Hi

I'm from the UK and trying to get some relief from years of gastro pain. I am trying to keep this short but not havingg much luck

I was eventually diagnosed with Hypothyroidism 6 years ago after going to the GP endless times with what I now know are classic hypothyroid symptoms including among many other symptoms a 5 stone weight gain, 2 carpal tunnel operations and chronic constipation with the associated pain('best' GP quote from this time no-one came out Auschwitz fat you must be comfort eating have some prozac).

No blood tests were ever taken and I only found out after ending up in a&e with suspected food poisoning, they took bloods and said oh by the way you are hypothyroid have some thyroxine. After 2 years of struggling while on thyroxine with different levels being prescribed I eventually got an appointment with a endo who agreed to prescribe T3 alongside thyroxine (no natural thyroxine prescribed in UK so no T3 content)which helped stabalise my TSH, T3 and T4 levels and I felt a lot better although still never 'right'.

I lost 3 stones but gastro problems continued to worsen with chronic constipation, bloating and extreme pain and I went through endless different meds some having no effect some making things worse as it increased the bloating and cramping. I was referred to hospital and after transit tests, barium xrays colonscopy etc the only option I was offered was for a loop stoma with a view to removing my large intestine completely. I balked at this and got a 2nd opinion who took me off the huge cocktail of drugs I was on as they were all fighting each other and prescribed Fleet and microlax enemas to use when things got too bad.

I was a bit better for a while after being off the medication but the constipation and bloating was still bad and over the last couple of years has got worse gallbladder being removed and heartburn GORD and ulcers joining the party. for some reason gastroenterology is divided into upper and lower so I was was under lower gastroenterology for the pain, constipation etc then taken off their list and moved to upper gastroenterology for the Acid, GORD etc and after big doses of nexium, ranitadine and over the counter antacids the ulcers cleared up but they couldnt operate for the hiatus hernia they found until the bloating constipation etc was sorted so hwas referred back to lower gastroenterology.

New drugs were tried and failed and I have now been referred to another hospital and waiting for my appointmenJuly 25th july. the only diagnoisis through all this is IBS

whats this got to do with Coeliac you ask?? - while going through the last round of hospital and GP appointments someone mentioned coeliac to me and I looked it up .... in all the years of tests I had never had a coeliac test done. I am not classic overwieght and find it very hard to lose even though I weigh my food and count every calorie. but a lot of the symptoms I put down to being hypothyroid (brain fog, fatigue hair-loss)are also Coeliac along with the gastro symptoms.

I asked GP for a blood test which came back negative so he suggested trying an elimination diet so since 2nd March I have been Gluten free.

the first 10 days were fantastic normal BM no bloating, energy since then I have had a few uncomfortable days with bloating and pain in the gallbladder area but nothing like before gluten-free in fact the uncomfortable days would have been classed as good days before!

so I finally get to my question - if you havent fallen asleep or lost the will to live by now

How long should I stay gluten-free before trying to eat gluten and see if it effects me (part of me is saying this improvement is short lived and its nothing to do with gluten just wishful thinking I have found a reason and I have got my life back)

how long does it take before the I could say this is as good as its going to get - the inital effect was fantastic will it level out or continue to improve slowly - I realise everyone is different and with no confirmed DX there is not test to tell me its getting better.

TIA for any help

[mommida]

From what you just wrote, gluten FREE makes you feel better. Why would I ever tell you to eat gluten so you can feel sick again?

Unfortunately, eveyone is going to have an accidental "glutening". That's when you know for sure.

It is common for some on the gluten free diet to have some constapation. You just cut out a lot of foods that were probably you main sources of fiber. Increase your vitamin B12 and also get you vitamin and mineral levels checked. (Constipation issues can be caused by low Magnesium levels.)

Hey by the way what does your tongue look like?

[Bubba's Mom]

About 20-30% of us test negative for Celiac, but have it. Some are gluten intolerant, which there's no good test for other than removing it from your diet, then trying it again to see if there's a reaction.

It sounds like this is where you are?

We generally say to give it a good 3 months completely gluten-free. This means removing all traces of gluten, even replacing your toothbrush. Then try eating it again and see if you get a reaction.

Your symptoms sure do fit. Best wishes to you. I hope you can get this figured out so you can feel better!

[nwblue]

From what you just wrote, gluten FREE makes you feel better. Why would I ever tell you to eat gluten so you can feel sick again?

Unfortunately, eveyone is going to have an accidental "glutening". That's when you know for sure.

It is common for some on the gluten free diet to have some constapation. You just cut out a lot of foods that were probably you main sources of fiber. Increase your vitamin B12 and also get you vitamin and mineral levels checked. (Constipation issues can be caused by low Magnesium levels.)

Hey by the way what does your tongue look like?

thanks for the quick reply :-)

I think I need to confirm to myself it is gluten if you see what I mean.Years of being made to feel its all in my head have had an effect I think I will look into the magnesium levels :-)

My tongue gets 'coated' sometimes Ill have to look again later

thanks again

[nwblue]

About 20-30% of us test negative for Celiac, but have it. Some are gluten intolerant, which there's no good test for other than removing it from your diet, then trying it again to see if there's a reaction.

It sounds like this is where you are?

We generally say to give it a good 3 months completely gluten-free. This means removing all traces of gluten, even replacing your toothbrush. Then try eating it again and see if you get a reaction.

Your symptoms sure do fit. Best wishes to you. I hope you can get this figured out so you can feel better!

thank you - it does sound like where I am though I havent replaced my toothbrush (or toothpaste, does that need to go?)

Luckily we cooked from scratch anyway though obviously the baking and breadmaking is under review (success with a couple of cakes disaster with bread )but finding all the unlikely places glutin is present has been an eyeopener!!

I'll give it another couple of months before trying Im just being impatient.

thank you for your best wishes and quick reply

[Skylark]

Hi

How long should I stay gluten-free before trying to eat gluten and see if it effects me (part of me is saying this improvement is short lived and its nothing to do with gluten just wishful thinking I have found a reason and I have got my life back)

how long does it take before the I could say this is as good as its going to get - the inital effect was fantastic will it level out or continue to improve slowly - I realise everyone is different and with no confirmed DX there is not test to tell me its getting better.

TIA for any help

I found my celiac by elimination diet. (I say celiac because I realize now I probably had dermatitis herpetiformis.) I went about a month off gluten before I challenged it. Wheat gave me a quick stomach-ache and then diarrhea so I knew pretty easily it was an issue. Rye was harder because I have a more classic slow celiac buildup. I thought it was OK then realized after a few weeks eating rye crackers and bread that the old stomach problems had crept back. It's possible you won't react quickly to a challenge.

You will continue improving for months if you're gluten-intolerant, years if you're one of the celiacs who has negative blood tests. About 20% of celiacs have negative bloodwork so it's hard to be sure you're not celiac based on only blood testing.

[nwblue]

I found my celiac by elimination diet. (I say celiac because I realize now I probably had dermatitis herpetiformis.) I went about a month off gluten before I challenged it. Wheat gave me a quick stomach-ache and then diarrhea so I knew pretty easily it was an issue. Rye was harder because I have a more classic slow celiac buildup. I thought it was OK then realized after a few weeks eating rye crackers and bread that the old stomach problems had crept back. It's possible you won't react quickly to a challenge.

You will continue improving for months if you're gluten-intolerant, years if you're one of the celiacs who has negative blood tests. About 20% of celiacs have negative bloodwork so it's hard to be sure you're not celiac based on only blood testing.

thanks Skylark

I think elimination diet is the only way I will find anything out unless the Gastro I have been referred to will order a biopsy with a negative blood test and then theres the issue of getting gluten levels up again. I'm not holding out any hope he will though because after googleing him one of his treatments for IBS is hypnosis I hope to have enough of an improvement to say forget it I'll stick to gluten free!! but I dont dare hope this early on that its the answer and cancel the appointment

[mommida]

Do a quick check into "geographic tongue" and definately look into vitamin B12

[Skylark]

thanks Skylark

I think elimination diet is the only way I will find anything out unless the Gastro I have been referred to will order a biopsy with a negative blood test and then theres the issue of getting gluten levels up again. I'm not holding out any hope he will though because after googleing him one of his treatments for IBS is hypnosis I hope to have enough of an improvement to say forget it I'll stick to gluten free!! but I dont dare hope this early on that its the answer and cancel the appointment

Hypnosis? Boy I sure hope the diet helps you!

[nwblue]

Hypnosis? Boy I sure hope the diet helps you!

I've got everything crossed

[nwblue]

Do a quick check into "geographic tongue" and definately look into vitamin B12

thanks I will look into both