Coeliac testing

[Chloew]

Hi everyone,

Long story so apologies. I have been gf for 3 years however dont have an official diagnosis. I went to Drs with extreme fatigue and after a series of questions Dr suggested getting tested for coeliac which I had my blood taken for that day. 3 weeks later I had the gp phone to apologise as my blood results had been mixed up. By this point, apart from the fatigue, my symptoms were much better I felt great. GP said he was happy for me to continue a gf diet and therefore I have no formal diagnosis. Shortly after I had blood tests for fatigue and now get b12 injections.

I've recently moved house and GPS and my new gp is not happy with previous advice given by old gp and would seriously like me to consider ingesting gluten containing meals twice a day for 6 weeks. I'm trying to decide what is the best thing to do and I'm torn. When having accidentally ingested gluten I have been ill but I understand that there are issues that being diagnosed could watch out for I.e infertility and bowel cancer screening.

Basically has anyone else been in a similar situation? How did you cope with the symptoms for 6 weeks? I'm worried that it will affect my job as well as make me seriously unwell and horrible to live with.

Feeling pretty deflated and upset at the moment so any guidance appreciated.

Thanks

[virgolizzy]

I refused to eat gluten just for the tests, as I had been off gluten for about 6 months, however my bloods still came back positive, albeit low & my endoscopy was positive. Whether you decide to go back to eating gluten is a personal thing. I actually get really angry about it, they would never ask someone with a peanut allergy to ingest that, just so you can prove to them you have it! Sounds as if you had a fab Dr beforehand, are you sure you can't stay with them or is it now too far away? I am assuming your new Dr is refusing to give you your B12 injections? Cos apart from a dexa scan & an annual visit to a dietician and annual blood tests, then that's all there is anyway? May be worth chatting to your new Dr again to try & get him/her to see sense! Good luck

[Chloew in reply to virgolizzy]

The b12 was agreed with my old Dr and I still get the injections. So far she hasn't suggested taking these from me or queried that. I have the other symptoms related to coeliac and have done since childhood. I'm 27 now but when I was younger i was in the children's hospital as I had stomach pains, distended tummy and couldn't put on weight. Colonoscopy should nothing and I was always just diagnosed or fobbed off with IBS. All the symptoms and reactions suggest coeliac.

The only reason I'm considering a proper diagnosis is the fact the doctor has suggested problems getting pregnant or in future screening for bowel cancer. I've been glutened before and I was ill so very worried how this would affected my work for the 6 weeks as I don't think there is a great understanding of the condition. I suppose I need to weigh up the pros and cons.

[Jacks in reply to Chloew]

I'll reply sequentially:

You knew that being gluten free would stop you producing antibodies so there would be nothing to detect. You just can't start the treatment before you get a diagnosis - if a diagnosis is what you want.

- Infertility is worse in coeliacs who continue to consume gluten, which you'd have to do on a gluten challenge. Maybe the damage after 6 weeks consumption balanced with 3 years of healing is more than you want to risk.

- Whoever told you that you won't get bowel cancer screening is a moron.

EVERYBODY gets screened - currently around their 60th birthday, (and many don't want to know!) but the age is planned to lower to catch the (very few) people in their 50s who develop polyps. It's (mainly) a disease of old age.

- B12 anaemias will be dealt with as a separate illness by the GP. Just like thyroid or any of the other autoimmune disorders. It's not compulsory to have one with the others.

- There is a massive understanding of Coeliac disease. Look at the research. They know the genes involved, the antibodies involved, the processes involved and they know that GF = cured (without drugs).

I did do a gluten challenge. It made me very ill. It was like the worst flu with dysentery. I wouldn't do it again. I don't get any benefit from being diagnosed, not even a check up and no prescription, but like a lot of things it's geographical. But I am well now, and strong again, and that's thanks to a (very) gluten free diet.

Bet you wish you hadn't asked ...

[Lisahelen]

Is it just the extreme tiredness that took you to this new gp? Or do you have any other symptoms? It might not be coeliac related, there are many things which can cause fatigue.

It might even be your b12. Do you have your blood test results? Can you get a copy if not? Often b12 needs folate ferritin to be at optimum to work. People also eat high potassium foods ie banana and broccoli to go alongside.

Although undiagnosed and you do have coeliac you are potentially likely to have any number of auto immune diseases visit you! It could even be your thyroid to blame.

Hop into the pernicious anemia forum and/or the thyroid forum if you think you might find extra help there.

[Regalbirdy]

Hi,

Getting a Coeliac diagnosis has (as you've already said) it's advantages. Only you can decide if it's worth it.

However as far as fertility and getting pregnant goes, my understanding is that it is the consumption of gluten that does the damage rather than just being a Coeliac.

[Jopjop]

Hi,

Is your GP suggesting the gluten challenge (6 weeks consuming gluten) for the blood test or also for an endoscopy? If just for a blood test then you may need to continue eating gluten if it is positive for Coeliac, in order to then have an endoscopy to confirm. Just something to consider.

I am just over 6 weeks into eating gluten again after only 3 months gluten free. My endoscopy is on Monday - I actually managed to get a cancellation a week earlier than planned as I am feeling so unwell. I'm not trying to put you off but to be honest I have only been able to work 1 day a week for the duration of this and have been in bed or in the house feeling absolutely terrible most of the time. I absolutely cannot wait to go gluten free again and if for some reason the tests from the endoscopy come back negative I will be really annoyed I have put myself through this and set myself back.

Please think carefully before you commit to doing this. I'm not really that sure how beneficial it is to get an official diagnosis when doing so makes you so ill and your body is telling you avoiding gluten makes a difference. I'm not actually 100% sure what benefits I will have from any kind of confirmation, I only went ahead with this because I didn't think it would be this bad and I was under the impression that it might not be taken seriously by the GP in future if I refused to complete the testing 😳

[Tweddelly]

Hi I've been Gf for just over 4 years and last year had to have a minor op on my Bowels which was due to all the upsets stomachs I had over the years. Anyway, the consultant said he would do a test to check for cealiac whilst I was under but I refused to eat gluten for the 6 weeks beforehand. The test came back negative which I expected but there was no way I was putting myself and my poor gut through the gluten symptoms.

What will a diagnosis tell you anyway if you feel better you being GF. As long as you have a healthy diet, avoid processed food, eat fresh and clean what possible harm can that do to you if / when you get pregnant. Doctors doing like patients self diagnosing and doctors are no experts on nutrition. Listen to your body, avoid prescribed drugs, get the root cause, which you have found is GF and look after yourself. Being Gf is not a disease it's actually a great way to eat. But it takes time for your body to catch up after years of vitamin deficincies due to the inability to absorb properly. Have you seen a nutritionist ?

Just out of interest, tiredness can be caused by a Number of things and if your bloods are good you need to find what the culprit it. I actually found that fake fragrances in products like soap, moisturisers etc cause me to feel drugged. Spent years with fatigue and after an elimination diet and lifestyle I found the culprit. Can't believe how I feel by cutting this stuff out.

Good luck. Don't stress too much about your decisions. 😀 It's not hard bluing GF. X

[Aliking4]

I'm in exactly the same situation. I've been feeling unwell for over 3 years now, diagnosed with Fibromyalgia last year after going all around the houses to find out what was causing the headaches, joint & muscle pain and extreme lethargy etc. It wasn't until I paid to have a stool analysis undertaken that I discovered it showed I could have undiagnosed Coeliac disease. To me it is important to find out whether it is CD or not to have a definitive answer after going round in circles. I recently went 3 weeks GF and felt much better but because I have a blood test coming up for Coeliac disease I've been eating it again, but I'm having to wait 2 weeks for a blood test and then of course I will have to wait for the results and then the biopsy if positive. Also, there is the point that the NHS blood test only tests for one kind of antibody so may come back as a false negative anyway. I'm now feeling so unwell and realising that it may take weeks for a diagnosis but don't want to stop eating the gluten as want to know for sure. It is a difficult one.

[patricia1040]

My daughter tested high positive for Celiac disease in November with a blood test. She immediately discontinued gluten. Her gastro dr said they could still diagnose her with a scope even though she had discontinued eating gluten. Her scope was in January and they gave her a definitive diagnosis of CD. This goes against the grain of everything Ive read, however, gastro dr. is the specialist???? They said it was okay for her to discontinue because she was "High" positive the damage would take months to heal and would still be apparent when she had her scope.

[GFlis]

Hi chloe i didnt eat enough gluten before having the camera tests as i couldnt physically put my body through it again so i didn't get the correct diagnosis through an endoscopy and colonoscopy its so frustrating as i know my severe reaction to eating gluten the pain, constant toilet trips, b12 deficiency etc i wouldnt have made it to work without needing the toilet that in itself caused severe anxiety for travelling! If i did eat gluten everyday id constantly of had to take imodiums. You know your body more then anyone. In a way i wish i had the full medical diagnosis so that i could be taken more seriously by the doctors etc. And not be fobbed off as having 'IBS' its so different But ive been gf for 2 years and it improves your health so much i still get minor flare ups due to eating foods with excess fat etc and are more tired then most but personally from my experience with the tests and having to force yourself to eat gluten id not put yourself through it

Good luck