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Having A Bad Time (Very Bad Flare/reaction)

fairydust81

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fairydust81 Rookie
fairydust81
Posted

Hi everyone,

Since joining this forum a few days ago I've found it to be so so helpful. Lots of information and guidance and helpful advice.

Well my RAST results (wheat allergy) and coeliac antibody panel test results are slowly starting to filter through. Only one that's on the system so far is anti-IgA which was 1.7 but at present there are no reference ranges so I have no idea what that means at the moment. None of the others were there before I left work so I'll ask again tomorrow. Just getting so impatient and I want to know if my bloods have shown anything or not. I kind of hope they do so I know it's not just in my head.

I feel awful today, extremely tired, in the grips of a bad headache which I've had since the weekend (after I binged on gluten/wheat containing products in an effort to show the doctor on Monday exactly what happens when I do eat the stuff)....skin rash is just awful and has now started to appear on my face, arms are painful around the blisters and as one patch heals another patch starts to form (aaaaaaaaahgh and they're so itchy!!), I do find piriton (in the UK, maybe called something else in the US) slightly helps with the itching...I just feel like my head is being squashed and my chest (I have had asthma since I was a baby) is playing me up making me feel quite breathless....I'm dying to cut out gluten but I know I can't yet until I've had the skin biopsy on the 14th...Just worried that nothing will show up....

I am wondering now if lactose intolerance is linked? When I was a baby I was lactose intolerant and spent my first couple of years on soya milk, something I did grow out of and drinking cows milk etc doesn't make me sick (at least I don't think it does????)

This has just been going on for 11 years (that I can remember) and I have had enough now, I hate going back to the doctors asking if it could be this, or that, but this time I am convinced that this is coeliacs with the typical rash DH - everything fits and all my symptoms all fit together to form one large answer - it's just took 11 years to piece everything together (especially as I've had other medical issues such as endometriosis)

Sorry for such a long post, I feel completely drained and am lay on the bed with my kitty and my laptop trying to get rid of this headache - I'm taking hydroxychloroquine for the arthritis and I've taken tramadol and paracetamol but still the headache persists :angry: :angry:

Thanks for all the support you've given me so far - I'm so thankful to know I'm not alone and I'll feel so much better once I know for sure...

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Mari Enthusiast
Mari
Posted

I'll be interested in seeing how the rest of your tests turn out. You may needdo a longer gluten challange to demonstrate elevated autoantibodies if you have been gluten-free for a while. Read up on how the skin biopsy is taken as some Drs dont take the sample from the wrong place.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Fairydust, yes, dairy intolerance has been linked to Celiac. If the villi in your small intestine is damaged then you will have problems with dairy. As for your problem with the hives, I can't help you much there except to say I had sores on my head for over 20 years that wouldn't go away no matter what I did or meds I took. It wasn't until I stopped eating gluten and got rid of all shampoos and conditioners with wheat based products in them that that went away.

I noticed that you have an arthritis problem. Are you eating a lot of nightshade vegetables? as in potatoes, tomatoes, bell peppers and eggplant, okra and tobasco sauce just to name a few.

They have a mild toxin in them that causes people with different types of arthritis pain and swelling in the joints and muscles. As well as can cause migraines, at least for me, plus tummy upset, pain and fatigue.

I hope this helps you some.

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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