Friday, 30 November 2012

To diagnose or to self diagnose......

Update:

Yesterday I visited my doctors surgery with my sample and to have blood taken for more tests. Once again the nurse at the surgery has left me with bad bruising to my arm. My veins are easy to find and close to the surface so I can only conclude that she is pushing too hard. It is no wonder people hate having blood taken!!
The results were supposed to go to the consultant only so I requested that they came back to the surgery aswell and the nurse was happy to oblige. The results should be back next week. I look forward with trepidation to finding out if they produce any positive outcomes. Until then I will continue to monitor my diet and the symptoms I'm experiencing.

4 comments:

  1. I have the same issue with giving blood but I am someone who bruises very easily. Fingers crossed this test is going to provide some information :)

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  2. Thank you, I hope so if not its 6 weeks of gluten for a second coeliac test. After that I will be tempted to have some private or alternative therapy tests done to help pin point the direction I should be looking in. I don't want to remain undiagnosed due to lack of NHS knowledge or interest!

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  3. Just to let you know we have had the letter back from Zac's GOSH doctor and it is very interesting. I think it sounds like it might offer you some hope and I am sure you will be able to identify with a lot of what I am about to say.

    I am about to write a more detailed blog post myself but wanted to share this with you first.

    Dr Adam Fox met Zac and he has identified that he believes Zac is likely to be suffering from 'non-IgE mediated allergy - to milk and wheat'. Look this up and I bet you will feel very reassured. He has pointed out that you can still be 'allergic' to something without being in anaphylaxis. He said if you suffer pretty much instant reactions such as bloating, vomiting, upset tummy, generally feeling rubbish - that is an allergic reaction. Intolerance is much slower in developing and less severe.

    He also said he felt that the three weeks Zac was made to eat gluten for the coeliac blood test was nonsense as you need around 6 months to make the test valid. He said that the severity of Zac's reaction during that three weeks, that culminated in him being hospitalised with a temp over 40 degrees, a lacy skin rash and a very poorly tummy indicated a massive allergic reaction to what he had been eating. This makes him confident that Zac has an allergy to wheat, and the coeliac thing is a red herring.

    However, being a thorough medic and scientist, he feels that the only way to confirm anything is with proper blood tests and to screen him for allergy against everything. The reason being that Zac is in a semi permanent allergic state and his histamine levels are permanently too high and he over reacts to everything. Because of the constant tummy troubles it is now too difficult to ascertain what the trigger is because everything aggravates a sore tummy. Think of it as a blistered foot. No matter what shoe you wear, it is going to hurt because you have a sore foot! He said an allergic persons gut is 'sore' and will react badly to most things, until you treat it. Apparently there is a drug which will fix the 'sores' on his gut and make him able to tolerate foods much more easily.

    So in your case, it could still be the lactose or milk protein which aggravated your gut and that could be why wheat 'hurts'. Or it could be that you have both allergies, like Zac. Or it could be that you always had wheat allergy, which hurt your tummy and made you lactose intolerant. We suspect it actually maybe this way round for Zac although his first symptoms appeared to be lactose intolerance.

    Now here comes the bit of news which pleased me but also shocked me. Coeliac disease can be screened for in blood - without having to eat the wheat!!! He said it is dangerous for Zac to do this and it was frankly reckless of the other medics to suggest I challenge him after what happened last time.

    As it is dangerous for Zac to eat wheat, he has said that in the blood you can screen for two 'genes or enzymes'. I can't remember which. I think it is a bit like the cancer gene they can screen for these days. If this 'gene' or whatever shows up in your blood, and you have the symptoms, then they are usually happy that you are Coeliac. However, if this does not show up then it dramatically reduces the likelihood that it is coeliac and is almost certainly wheat allergy. The things he will screen for are called HLA DQ2 and HLA DQ8. You might want to look those up too. I think it sounds like you want to challenge your GPs/consultants with this info.

    Interestingly Dr Fox says there are NICE guidelines, which explain a lot about non-IgE mediated allergy and all GP's have been issued with them, and most clearly have not read them. http://www.nice.org.uk/nicemedia/live/12164/50202/50202.pdf

    I am no doctor and it is not for me to tell you what to do, but I do think this information will be of interest to you and anyone else having these battles. You are not mad. There is something wrong. It can be fixed. Best of luck Emma.

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  4. Nicola that information is not only reassured me but I suspect helped every person who reads this blog. I'm so sad that you have had to go through so much to find someone that will help Zac but I am also very grateful to you for sharing this valuable information.
    I will certainly follow up the links you have suggested and let you know how I get on. I'm keen to find out what my blood test results show and from there I can decide what to do next.
    I'm so happy that you now know the problems for Zac and you can start to move on. Anyone who would like to know more can find Nicolas blog at www.feedingmyintolerantchild.com

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