GF for a year and now allergy symptoms - have cut out corn, rice, soya and dairy

[cott97]

Hi. GF made a huge difference and I have never looked back. Last 2 months the joint pain and tiredness were back. No cross contamination so started cutting rice and corn out but noticed a sore throat when I tried to reintroduce them.skin was very itchy too. Now dairy and soya is having the same affect with blotchy skin on my face. Have seen GP and have an appointment with immunologist in July. Has anyone else experienced this super sensitivity when going GF? I am not diagnosed CD as I refused to eat gluten again and make myself Ill just for the tests. Would welcome others experiences - am I normal? Or normal for this site!

[Regalbirdy]

Hi cott97

You're probably normal for this site anyways!

I am a soya and dairy intolerant Coeliac. Like you I have found that I react to other things as well as gluten. I find the gluten and milk products are fairly similar symptoms wise; And soya causes me to have extreme fatigue soon after eating it.

You're rather unlucky to not be able to have rice and corn any more but that is also far from unheard-of.

It's rather unfortunate that they are making you wait until July to see an immunologist as that seems rather a long time to me for someone with complex food issues. Ever thought about travelling further afield to a different hospital? Sometimes that can really shorten your wait. It's just a thought...

[pretender]

When I was diagnosed for the second time in June 2007 I was advised about the GF diet, biggest mistake I made. I found the low level of gluten 200ppm at that time made me ill, the gluten then was changed that then triggered an allergy so I go by ingredients not by the term "GF"

[cott97]

Am now only eating non gluten containing ingredients - basically cooked from scratch - thought I was getting contamination to start with as most of the symptoms were similar. The itchy skin and throat were a new symptom - they might happen with gluten now but not tempted to try! Finding the dairy the hardest strangely and still using lactose free milk but thinking I might have to abandon it totally

[cott97]

Must admit as I don't have a formal diagnosis and am coping I don't feel able to push - not my normal reaction.

[Malago]

I don't want to be hurtful or controversial but.......... my point is that ........ if Coeliac Disease is ever suspected get the gold-standard test ( endoscopy & biopsy) . With an official diagnosis you would then get more swift/better treatment as you might not be making the expected recovery and your health will be monitored with this is mind.

An extreme example might illustrate this further ...... you suffer a fall with hurt arm (in fact looks bent/odd), refuse X-Ray (personal reasons) then are puzzled weeks/months down the line because;you're still in pain, reduced mobility, arm looks odd when wearing short sleeves! Who would take this route after a fall?? !!

Also with so many GPs/health practitioners and hospital doctors still not understanding Coeliac Disease we need to prod them constantly into knowing more about it.

[haydn74]

i agree with you totally. My blood test was 99% but endoscopy proved it 100%. That all led from a fall, and subsequent tests, so to me, that is the only foolproof way via an endoscopy

[cott97]

I do understand your reasons for suggesting a proper diagnosis however I work full time and the time it would take from me eating gluten to an endoscopy is just too long. My GP is fully aware of my condition and history and understands the reasoning for not seeking a formal diagnosis. Even if it came back negative my reaction to gluten is so severe that I still wouldn't eat it. I do find the new sensitivities irritating and am concerned whether they are true allergies due to the skin and throat irritation rather than intolerance. I would certainly recommend testing prior to giving up gluten rather than the way I did it .... My main symptoms were joint and abdominal pain though I was having stomach related problems I was putting down to other things.

[DonnaldIW in reply to cott97]

I'm with you there cott97, I wouldn't knowingly eat gluten for a day let alone the four weeks needed to get a conclusive biopsy. In addition to gluten I cannot tolerate dairy, soy, chicken or beef. I find the sensitivity a little reduced (stomach-wise) since taking probiotics but dairy still brings on painful IBD and often a throat or chest infection within a couple of days. Soy bloats me and makes me very tired. One thing I never seem to have issues with is fish. I have recently started taking fairly high dose Vitamin D which really seems to help with the fatigue and joint pain. I hope you find some answers and start to feel better very soon. x

[cott97]

Thanks. How much vit d do you take? Im finding the lack of carbs quite difficult

[Penel]

Have you tried quinoa as an alternative to rice? I can't eat yeast so bread is out but I use gram flour and buckwheat flour (make sure it's gluten free) to make pancakes etc.

I had problems with dairy for some time, but can now tolerate lactose free.

Hope you can get some answers from the immunologist.

[cott97]

Thanks - did try quinoa but didn't like the taste or texture. Pre GF I was so addicted to bread and rice that I think I ruined my taste buds... Often wonder where I'd be if I'd never tried bread