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A Little Help With Celiac

gina77

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gina77 Newbie
gina77
Posted

Hiya, i am new to all this and just wanted a little bit of advice. I have been ill 14 months now, had so many tests ive lost count, and still no diagnosis of anything. In the first 8 weeks of illness i lost 6 stones in weight and still feel like im battling it daily. I have tummy problems, and am terribly constipated, never was before this i went regular as clockwork, now i can go 2 weeks without going to loo unless i take macrogol daily. I am bloated most days have bad wind from both ends, I feel like my hands and feet tingle on and off most days, and i have what looks like an allergy rash that itches intensely, strangely this is only on my hands lower arms and feet. The only tests which came back with anything was low pottasium.i have been on zantac, omeprazole anti depressants etc and nothing has helped. past 3 days i actually felt human, no pain no bloating, itching, tingling, nausea, then last night i had 2 pieces of pizza, omg big mistake, all symptoms back with a vengeance. I have also missed another period, something i am doing a lot since i took ill. I have had a blood test and biopsy for celiacs and been told both were negative, but at time i was in hospital and hadnt eaten for 9 days could this give a false negative? it feels like each time i visit docs i am made to feel like some kind of freak, that has symptoms that relate to no known illness, i am now 6 dress sizes smaller and feel so weak most days, 1 doc even implied i had lost the weight purposely. Would it be worth me fighting to get a re test? please any advice would be of comfort.Thanks in advance

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carecare Enthusiast
carecare
Posted

I'm sorry you are feeling so ill. My advice and the advice of many here I am guessing would be to just give up gluten for at least 6 months and re-access your symptoms...and if need be at that time have a slice of gluten and see what happens. You will absolutely know if gluten is causing you some problems. Since you've been through all the testing there's nothing stopping you from just giving up gluten and taking this in your own hands. I'm in the middle of testing. My blood test was negative...and next week if my biopsy is negative it's not going to stop me from removing gluten from my diet for good because in the end I know gluten effects me negatively.

Good luck!

The only other thing...if your rash is DH then you can get it biopsied and if it comes out to be DH then for sure you are celiac.

Takala Enthusiast
Takala
Posted

Not unusual to have negative bloodwork, yet it turns out one will have gluten sensitivity which responds to a gluten free diet.

pricklypear1971 Community Regular
pricklypear1971
Posted

If you have DH and have been on steroids at the time around Celiac testing you are more likely to test falsely negative.

DH Celiacs have patchier than usual intestinal damage and are more likely to test negative on blood tests. Steroids are actually used to treat refractory Celiac and decrease inflammation and that could contribute to a negative biopsy and perhaps lessen the overall autoimmune effect, resulting in lower antibodies.

So, get to a dermatologist at get the rash tested for DH. It's your best bet for a Celiac dx, if that's your issue.

gina77 Newbie
gina77
Posted
  • Author

I'm sorry you are feeling so ill. My advice and the advice of many here I am guessing would be to just give up gluten for at least 6 months and re-access your symptoms...and if need be at that time have a slice of gluten and see what happens. You will absolutely know if gluten is causing you some problems. Since you've been through all the testing there's nothing stopping you from just giving up gluten and taking this in your own hands. I'm in the middle of testing. My blood test was negative...and next week if my biopsy is negative it's not going to stop me from removing gluten from my diet for good because in the end I know gluten effects me negatively.

Good luck!

The only other thing...if your rash is DH then you can get it biopsied and if it comes out to be DH then for sure you are celiac.

thanks for your replies, i have looked at the DH rash and that seems more blistery than the rash i get mine are more like weal marks, i asked a doctor to look at the rash and he said i was allergic to sunlight, no tests no nothing, he gave me anti hystamines and told me to take them for life. I think i will take your advice and kick gluten, and see if there are any improvements, i will also look up gluten sensitivity as i didnt realise there was such a thing. I only thought of celiac cos a sufferer told me to look into it as she said my symptoms were very similar to hers. Thanks again for your replies.

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