Gluten Free Guerrillas

My 27 year old daughter has been diagnosed with IBS. She also has nausea, tingling in arms and legs and freezing cold hands. What could it b

She is now 6 weeks pregnant and worried that IBS could affect her pregnancy. Last year she had a miscarriage and was devastated she is terrified that it might happen again. She is also very worried that it might be somthing more serious.

any advice would be welcome.

5 Replies

HI angeliquesance

Very sorry to hear about your daughter, my 28 year old daughter was having some of the same symptoms as yours , in particular the cold hands. She also had other symptoms such as feeling tired all of the time, unable to concentrate, feeling off balance. I assume your daughters nausea is due to being pregnant.

You dont say whether your daughter has CD as well as IBS. My daughter has been tested for CD and doesn't have it and has been diagnosed with IBS although her stomach issues are only mild. At Christmas she gave up eating gluten and also started having monthly Vitamin B12 injections from our GP and does feel better.

I found out information about the vitamin b12 injections from another group on Healthunlocked who are PAS ( pernicious anemia soc.) From that group i found out that someone can still be above what is classed as normal ( range 150 - 1030) and have the symptoms associated with low vitamin b12, my daughters blood test was 227.

Luckily we have a good GP who listened to us and agreed to provide the injections due to the fact that she had the symptoms.

I think if your daughter is worrying then she needs to book an appointment with a GP asap so she can discuss her worries with them and get some proper medical advice and they will hopefully be able to put her mind at rest.

Hope this is helpful to you and she has a successful and happy pregnancy


Hi angeliquesance.

Welcome to the GFG's. If you found your way here then I guess you are already suspecting your daughter could have a gluten intolerance.

Please do not take anything I say here in lieu of proper medical advice! I'm a coeliac – not a doctor!

You may find that the Coeliac UK website has some useful information for you. I think one of the more notable changes in medical thinking in recent years is that you don't have to be a coeliac to have a gluten intolerance. Non Coeliac Gluten Sensitivity (NGCS) is now becoming increasingly recognised. The symptoms are very similar, however it is thought not to affect the immune system like Coeliac Disease does. Coeliac disease can be picked up by a blood test; NCGS is not.

The first and obvious question to ask you is: has your daughter had the tTG coeliac disease blood test? If she hasn't I recommend that this is done ASAP.

Coeliac disease has many, many different symptoms and without wishing to alarm you; miscarriage can be one of them. As you are saying she has IBS, nausea and neurological symptoms as well, she really does need to go back to see her GP for further advice. I feel she has a right to be concerned.

If the GP refuses to listen/or the blood test has come back negative; I would normally suggest going gluten-free anyway to see whether it eases or improves symptoms.

However, the fact that she is pregnant makes me much more reluctant to give this kind of advice - because in order to do this, she must have a very good understanding of the Calcium, B12, Vitamin D, Iron and folate that she and her baby will need over the coming months (in addition to all the trace minerals) in order to stay healthy. Ceasing to eat gluten is actually the easy bit!

It may be helpful to explain that gluten containing foods are very often fortified with one or more of the above. Gluten-free foods aren't fortified nearly as often in the same way.

Gluten intolerance is such a huge subject and I have barely scratched the surface here. Sadly you may find that GP's don't always know as much as they should about the subject. Certainly not all of them know that under NICE guidelines IBS should only be diagnosed after every other possible cause has been ruled out.

There are also many other causes for the symptoms you have described that are not related to gluten.

Good luck with your daughter.

1 like

Especially since your daughter is pregnant and worried I really feel that she needs to discuss this with her GP and ask for some further testing. There are several disorders that could have those symptoms and some of them impact pregnancy. In particular I would be asking for testing for antiphospholipid syndrome, thyroid levels and iron levels.


Sorry about this late response; don't check this site very often. What did interest/concern me was your mention of cold hands and tingling in arms and legs...... these are both symptoms of ataxia which could be gluten ataxia. Check these out on line and see what you think. I never associated my sense on being unsteady on my feet and lots of pins and needles with my coeliac disease ....... thought it was a factor of getting old. Did mention it to GP who asked if I ever felt dizzy/giddy/feint ? Well I never felt like that at all ...... and that was that! However after many months GF after Coeliac diagnosis I realised that this unsteadiness had gone ....... felt safe in shower first time in years........ I believe I had gluten ataxia which resolved itself once gluten free. This is all very new medical stuff (2012) ..... the teaching hospital in Sheffield seem to be leading the way.


I've only just joined this community, she may have discovered the source of her issues by now, but has she had her Thyroid checked? Thyroid issues can cause sluggish indigestion, cold intolerance and absorption problems. B12 is usually low with can lead to pins and needles. Miscarriage is common with untreated thyroid conditions. Thyroid autoimmunity also has close connections to Celiac disease.


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