Looking for an allergy specialist

[ItIsntJustAPhase]

I have chronic fatigue syndrome and various sensitivities. I have asked for a gluten test at the doctors and the results came back that I am not celiac. I definitely react to gluten but not with classic celiac symptoms.

However, I also seem to react to other things. I ate some gluten free sausages last night that had chickpea flour, soya flour, rice flour and sulphates and had to go to bed afterwards and still feel shaky today.

I just want to see someone (medically qualified) who can tell me what is going on and what to avoid.

My son has nut allergies but also sometimes get mystery reactions and we have not had great help there either. A skin prickles showed he reacts to soya, peas, and beans as well as cows milk... But only a bit so we were told no need to avoid completely?

I don't have a lot of energy for fighting the system so am prepared to just pay to see a specialist somewhere who will look after the whole family.

[ppeatfruit]

At the risk of getting a load of negativity (from other posters)Except Thumbwitches (who is a scientist and follows it) . I would look at your and your ds's blood type by Dr. Peter D'Adamo . Because we all react differently to different foods and it gives you proper explanations to why. I can't eat chickpeas either.

[Superworm]

Which test did you have for the coeliac?

I have coeliac disease and my blood tests were negative but I had a positive biopsy. When I went gluten free I realised I had lots of trouble with my digestion and was diary and soy intolerant for almost a year while my gut healed. It caused me to feel far more ill than the gluten did. Might be worth revisiting the coeliac diagnosis? Coeliac uk are very helpful for discussing things like this.

[ItIsntJustAPhase]

Thanks both.

I think I had a blood test (it was a while ago now) and I made sure to eat wheat for a week beforehand (even though it causes me horrible constipation, bloating, wind and general stoppage!).

I'm going to make an appointment with a sympathetic GP and discuss this but maybe I should call Coeliac UK beforehand.?

[Superworm]

I would give them a call. They are very helpful and can talk you through the best way to be taken seriously by the GP, even if it only rule out CD.

I went to the GP on and off for five years with various symptoms and nobody mentioned coeliac disease. I was diagnosed by chance when I had an endoscopy for something else.

I read it takes an average of 13 years to be diagnosed with coeliac disease, which is a long time to suffer.

[ItIsntJustAPhase]

Okay, I called the Coeliac UK people and they said I should have eaten much more gluten (at least four slices or bread or a bowl of pasta daily) for much longer (at least six weeks) to get a reliable result. So I will start today and have made a doctor's appointment for ten days time or so, and will seek a blood test after that.

I am actually quite scared of eating wheat again.

[Superworm]

That's good they were useful. I hope you don't feel too terrible with the gluten.

Caroline Quentin has just been through something similar to get a formal diagnosis. Really highlights the importance of diagnosis being managed properly by GP's. Good luck with it

[ItIsntJustAPhase]

I've actually decided I can't do this just now. I am trying to get my son's autism diagnosis sorted out, I have in laws coming from overseas for a week, I am in the middle of building work, I am trying a new treatment for chronic fatigue... I just can't challenge myself so will avoid gluten for now.

But after another mystery allergic reaction from my son we should have an allergy appt for him v soon. I chased today and will chase again tomorrow.

[Superworm]

I can totally understand that. I think reintroducing gluten is something that you need to plan for the right the to be unwell. Sound sensible to try one intervention at a time. Hope the CFS improves

[Bitterlemon12]

I have a mystery illness and about 4 months ago decided to give up dairy, oats, rye, barley, corn and cut down drastically on meat and sugar. I watched a lot of videos on you tube and the consensus seems to be that none of these things are good for you and it puts a strain on ones immune system having to process them. The grains especially and beans because if they are genetically modified, which most are, cannot be digested and clog up the villi and stop one from absorbing nutrients. There are lots of alternatives - coconut milk, lactofree, quinoa, sweet potatoes cooked in coconut oil as oils are also not natural. Try to eat a huge raw salad on its own every day - full of nutrients which you may be lacking. Look at food combining. Look at supplements. All this helped me. It's hard to diagnose food intolerances.

[TypinginGloves]

ItIsntJustaPhase I would really recommend getting an NHS referral to an allergy clinic because it will take time to come through and hopefully you will have a chance to manage your other problems while waiting. I have just been referred today (yippee!) - currently having several odd and alarming reactions to foods that I've eaten regularly - including g/f sausages! Have had some initial tests but still reacting to things that I'm supposed to be negative to ... so no rhyme or reason. And I too am having a flare-up of ME which I had long ago (oh, and I have a DS with ASD too!) And yes, you do need to eat a lot more gluten for a test - but mine came back negative and I know that I have an issue so have been g/f for some years now. I didn't get good advice while still eating gluten and like you, I could never face going back onto it for so long in order to have an endoscopy - certainly not while managing the rest of life.
Hope things improve for you - I thought you would just like to know that someone else out here is experiencing similar things...