I have having severe tummy pains from endometriosis and dens adhesion in my pelvic area for last 10 years. I get my stomach bloated time to time so I decided to go on gluten (and dairy) free diet which was recommended for endometriosis. I had strict gluten free and a less strict dairy free diet for 2 months and my bloating was really improved.
When I mentioned about it to my GP he decided to test my gluten intolerance / celiac. He told me to make a blood test appointment at the reception. So I made it for a week later which was the earliest they could do. He didn't tell me to put gluten back so when I was told by my celiac friend, I had to ring the surgery and ask if I need to that but the receptionist seemed to think I shouldn't change my diet as my GP knows I had been on gluten free diet but she checked with the doctor and a few hours later she rang me back and said he said yes I was correct but I don't have to eat too much and just eat normally and come to the blood test next week.
My other celiac friend advised me to go on to the Celiac UK website and told me I needed to eat gluten at least 6 weeks before the blood test. I had to go back to my GP and then he said to me if we could "compromise" to "3 weeks" gluten then blood test. Well he knew I am already suffering with symptom of bloating and nausea, rib pains, mouth ulcers and migraines aggravated (I didn't know these are the symptoms as well before) so he was probably trying to help me to speed things up.
Is 3 weeks gluten long enough after 2 months of gluten free diet?
He said if my result are positive it will be positive. But if it is negative? Am I going to have another blood test? (He said he doesn't mind repeating test but it is my blood!) Or is he just going to send me to biopsy straight away? Can he do that?
I do have some celiac symptoms but I didn't think I would be. I have severe tummy ache but I think they are because of endometriosis and it is very severe with my cycle. I could feel a lot of difference gluten free and gluten time. My mind felt so clear and such a energetic ever for a few weeks during gluten free 2 months.
Would I be sent to endoscopy even though my blood test comes out negative if I have symptom?
Whether the blood test comes positive or negative I am going to go back to gluten free after that (well if it is positive I have wait a bit longer though). I just decide to take this blood test for the sake of my family. I heard celiac could be passed on. If I AM celiac I need to keep eye on my family.
I am sorry to that I go on but I am a bit confused as I didn't go to see my GP to discuss gluten topic on that day and came out with this. I am not very happy with the fact I have to re-start eating gluten and suffer again. I got over the shocky sicky days over after re-introducing gluten but now feeling low nausea all the time and rib pains after eating gluten, frequent migraines. I wasn't that sensitive before, I am sure.
If you can let me know any of the answer I am very grateful. Thank you.
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shukudai
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I spoke to you on the endo forum. Your symptoms could well be coeliac disease.
There is no knowing if your gluten antibody levels will be high enough to be detected, unfortunately not many doctors know much about the subject and it's very common to be wrongly informed about eating gluten. Even if you have a negative blood test you may be referred for a biopsy to see if gluten has damaged your gut. You need to keep gluten in your diet
until the biopsy is done. Have a search for past discussions on the subject.
Many people feel it is barbaric to have to inflict damage on themselves to get a diagnosis, and just take themselves off gluten. The advantage of a diagnosis is that you should get follow up tests, to check bone density etc, to check other family members. You may get gluten free food on prescription (although a lot of people would suggest avoiding ready made gluten free food).
As you have discovered having to go back to eating gluten after having eliminated it, can cause a strong reaction.
Hi Penel Thanks for your reply again. I am glad that I found this forum. I will keep eating gluten until all the test are done. It is painful but it clear my food cupboard with gluten in it. I don't have to waste them
I am more bothered about passing on to my family than getting gluten free food on prescription. I just hope I haven't passed it to my child.
ive been undiagnosed for years. ive had 3 endoscopes and 3 colonoscopys and the stupid doctors couldnt find anything! I don't need some asshole who just wants my $ to tell me im not sick. they never believe me anyway. ive suffered so badly for over 10 years. SEVERE SEVERE SEVERE ENDOMETRIOSIS, migraines, horrible diahrea and/or constipation, burning in my guts, bloating, joint pain, canker sores, horrible skin rash, obsessive compulsive disorder, sleeplessness, mind fog, the list goes on and on. ( by the way IF YOU GET THE SKIN RASH THE DERMATOLOGIST CAN DIAGNOSIS YOU THAT WAY. NOOT ALL CELIACS GET DERMATITIS HERPETIFORIS BUT EVERYONE WITH DERMATITIS HERPETIFORIS HAS CELIACS) THE RASH COULD BE DRY RED ITCHY SPOTS THAT TAKE FOREVER TO GO AWAY OR EVEN PIMPLE LIKE SPOTS THAT ITCH AND SEEM TO COME IN MULTIPLE SPOTS) ITS FUNNY CAUSE ALL THE GASTROS IVE EVER BEEN TO TELL ME THEY DONT KNOW ABOUT THE SKIN THING CAUSE THEY ONLY DEAL WITH THE INTESTINES. REALLY DOC? TO ME MOST DOCTORS ARE AN INSULT TO OUR PLIGHT AND INTELIGENCE! fuck the diagnosis! do you really need to get sick again for some more- on to tell you "its all in your head!" REMEMBER : YOU CAN BE GLUTEN INTOLERANT WITHOUT BEING CLASSIFIED AS A CELIAC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi spider, you're obviously having a hard time getting any sort of diagnosis and if it is any consolation to you many of us have been through similar scenario's where we have been told that it is stress or IBS and the average time from symptoms starting to diagnosis is 13 years.
I had 2 barium meals and was told that it was stress and that I was some kid with hypertension and they even gave me tranq's!!! I kept being told that I was too healthy to have anything wrong with me and I realised that I had to take a step back and let time run it's course or it would make me neurotic and that in the fullness of time all would be revealed and it was. The irony was I had complained of internal bleeding to first be told that i was imagining it then when I said i can prove it, that I had added blood to the stool samples. And I felt similar emotions to you towards the so say specialist. Then 13 years after the upset stomachs had started I went to give blood as they were short of my blood group only to be sent to my Dr's with a letter saying how anaemic I was and the Dr i saw looked at me read the letter and said I'm referring you to hospital as an emergency as you're obviously suffering from internal bleeding, I was diagnosed with coeliac and then with microscopic colitis.
So my advice to you is that your anger understandable as it may be, is not helping you and nor is your attitude to Dr's.
And what do you do next? well how about having a genetic test for the marker gene's of CD please see:
And from my experience being diagnosed and in the system everything changes as ''we'' have a medical label and this opens doors to other related issues and the need for dexa scans to measure our bone density etc.
Here in the UK we have the NHS and I now feel that it is amazing and I have enormous respect for Dr's and I realise how hard it is for them to make a diagnosis sometimes as many of the symptoms of CD/gluten intolerance are the same as stress symptoms and another irony is that being an undiagnosed coeliac is stressful.
So to sum up try and change your attitude and try and help Dr's to make a correct diagnosis,
That's my 2p's worth or should I say 2 cents worth! And good luck to you.
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