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Celiac Test

(12 Posts)
Gobbledegeek Fri 15-Feb-19 21:54:39

Has anyone had to put gluten back into their diet to get a second celiac test? I stupidly cut gluten out of my diet before the test. I think I was gf for about 7-12 days before the test which was negative. The problem is that since going gf I am sooooooo much better. I just wondered if anyone has had pretty severe symptoms such as the IBS digestive stuff alongside tingling in feet and hands, low iron, confusion and clumsiness, weight loss and NOT had celiac disease? I was also pretty hairy but going gluten free has started to resolve that even!

I know I have to put gluten back into my diet for about 6 weeks before another test but if all those symptoms come back it’s going to be tough and I’m getting a bit scared about reintroducing it if I am celiac. Grrr! Why did I go gluten free?!

OP’s posts: |
JiltedJohnsJulie Sat 16-Feb-19 17:23:23

I'm not coeliac but just wanted to give you a bump smile

Gobbledegeek Sun 17-Feb-19 08:45:46

Thank you! I hope someone can give me a bit of advice. I suspect my daughter is similar to me but she’s only 8 so I was going to try to get myself tested properly first before she had to go through anything unnecessary.

OP’s posts: |
JiltedJohnsJulie Sun 17-Feb-19 09:38:29

If you think your DD has Coeliac, wouldn't it be better to get her tested OP given all of the related health issues? smile

Gobbledegeek Sun 17-Feb-19 10:08:42

Yes i’ve got her booked in with a new GP discuss it all next week. Our original GP believes it’s IBS brought on by stress. She had a very difficult start to school and we ended up moving her she’s much much happier now but the symptoms are persisting and it’s 4 years later. I’m similar - obviously stressed from the school problem but also dealt with my son’s cow’s milk allergy that took 7 months to get diagnosed and other work related stresses (not me but DH). I’m quite sure I have a big gluten sensitivity brought to a head with the stress but can’t be sure whether it’s celiac disease or not. It could be just a big sensitivity that just needs time and effort to heal - I know i’m Sensitive to the FODMAPs too.

I don’t want to use DD as a test for me but she is definitely displaying problems with gluten so I will be taking her. Our first doc doesn’t seem to be very receptive to foodie things as his missed DS’s CMA and was treating his weeping eczema with antibiotics and telling me his wheezing was croup. I think the new GP won’t put up the barriers I dealt with with that doctor. We’ll get there!

OP’s posts: |
Laterthanyouthink Sun 17-Feb-19 10:10:30

Just to say NICE guidelines are to test for coeliac disease before diagnosing IBS.

Gobbledegeek Sun 17-Feb-19 16:19:44

Thank you for letting me know that. What a mess i’m in! Anyway, i’ll Get DD to the docs and properly investigated.

OP’s posts: |
NicoAndTheNiners Sun 17-Feb-19 16:25:44

Yes, you could have had a false negative. Was this for the endoscopy? Do you know what your blood test result were? You should eat gluten at least twice a day for minimum of 6 weeks before any tests.

Think about what benefit you'd get from a formal diagnosis and whether it's worth doing a gluten challenge. The only cure is gluten free which you can do without a diagnosis. however with a diagnosis you may get prescription bread, also your GP might want to do more health tests such as bone density checks at frequent intervals, etc.

yikesanotherbooboo Sun 17-Feb-19 16:36:54

If you or your daughter possibly have coeliac it is very important that you get the diagnosis made formally. It is potentially a very serious condition with lifelong consequences as I am sure you know. Make sure you follow instructions before the test and then you will know properly and be able to make plans. Same for of luck

eggsandwich Sun 17-Feb-19 18:32:44

My dd has coeliac disease and was diagnosed at 13 she’s now 16, I was diagnosed many years ago with IBS was actually hospitalised with it at one point when I was 24 I’m now 55.

After my dd was diagnosed, her results were so conclusive that she didn’t need an endoscope that I thought I would get tested but it came back unlikely.

I do however suffer on occasions with tingling hands and confusion but have put it down to the menopause.
I’ve not actually gone gf myself, but I have noticed when I have some of her prescription bread which is gf I don’t get the stomach issues that I do with normal bread.

I suppose that because I’ve lost no weight (I should be so lucky) I’m probably not.
I’m now thinking that I should go completely gf, most of our meals are anyway because of my dd, it’s just the snack that are not really.

Gobbledegeek Sun 17-Feb-19 22:13:15

Thank you everyone. I feel so stupid for going gf before the blood test but I was in a right mess at the time I would’ve done anything to feel better. At least DD is not gluten free and will get a more accurate test if they do it.

I’ve been doing a lot of reading up on this and it looks like a test for those who have gone gf already isn’t that far away. I’ve also read that the biopsy might be able to be performed accurately if you haven’t been gluten free for very long and, if you have, you may only have to reintroduce it for two weeks rather than the six for the blood tests. Has anyone had any experience of this?

I’ve also read up on non-celiac gluten sensitivity which has the same symptoms as cd but not the bowel damage. It seems just as concerning as cd though - does anyone know anything about it?

Thanks everyone. I’m definitely going to get DD tested and me retested but just a bit scared that i’m going to have to go through all those symptoms again and what going back into gluten will do to me.

OP’s posts: |
Troels Wed 06-Mar-19 17:51:07

Ask to have her retested. I was gluten free for 3 months when the consultant repeated all my bloods, and I still came up as having coeliacs. Now waiting for the endoscopy and biopsy. Spoke to the doctor the other day and she said once I get the appointment to start eating gluten again for the biopsy. I'm still having plenty of symptoms so I think I'm getting glutened somehow. sad

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