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Just been diagnosed and struggling


BeckyF

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BeckyF Newbie

Hi, this might be a long post but really needing some help and advice...So I'm new to this disease and have only been told a week ago by my GP it's highly likely I've got Coeliac disease and will be having a biopsy to confirm this in November. I've been gluten free since a week prior but accidentally severely glutened myself over the weekend before last with a few foods I thought were safe. I've been off work loads since symptoms started kicking in in April this year and have now been off work for the last two weeks due to the severe pains from being glutened. It's given me terrible anxiety, depression and despite genuinely wanting to get back to work I cannot get out the house without nearly throwing up repeatedly and having severe pains in my stomach most mornings. I've used paracetamol, peppermint tea, hot water bottles and even had my husband massaging my abdomen to try move what feels like trapped gasses around. Massaging it has worked in the past but other times (more recently) not so much. Back in April, I was planning my wedding for July this year (4.5 months to plan everything was rather stressful to say the least) and I don't know if that triggered off my symptoms and coeliac would have just come out another time in my life. I would say I've suffered with anxiety since my early teens, I used to have IBS when I was very young, and have never had good energy levels. I don't know if this means I've had Coeliac for years and only just now it's come to the fore?  We've been super strict over this last week but I'm still very anxious, exhausted, weak, nauseous and in a lot of pain that has kept me awake at night. It might be worth mentioning I live on a working farm that works mostly with wheat, rye and barley. Will living here have a negative effect on my health? How long does it take for symptoms to clear up and to feel 'normal' again? Is it normal to have this much pain that I'm bent over a LOT of the time, nearly throwing up but never actually able to and almost instantly in pain and severely bloated after eating most meals? What's helped you all get back in control of your health and life? Has anyone has symptoms like mine? Any advice, or even if others have had a similar experience to what I've described would be great just to know I'm not alone or if there's something I should be doing that will massively help me?? 
Thanks,
Becky 


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cyclinglady Grand Master

Welcome!  

You might try the search button on the forum.  I found this thread to get you started:

https://www.celiac.com/forums/topic/52692-farming-with-celiac/

 

Ennis-TX Grand Master

OK, first welcome, second might do good to check the newbie 101 thread.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Now about the testing.....you do know you have to be eating gluten every day for the testing? The biopsy test will require you to be eating a slice of bread a day for 2 weeks prior. A blood test much longer but you already knocked that out.

About living on the farm....I hate to say this but if they have wheat dust from the grain in the air...your going to have to move. Air borne flour can be inhaled and gets trapped in the mucus in our nose and throat then drains down into our stomach/digestive tract where it triggers a gluten exposure and antibody reaction. Flour dust can be airborne for over 24 hours when used in a bakery or kitchen environment. As to the farm...I honeslty do not know what your prospects are of having ground wheat kernel in the air. They make pollution mask like Respro brand I have used the Sportsta and Techno when I go shopping...our stores have open bakeries around here and sometimes I would feel sick after getting home, it stopped when I took this precaution. I am also allergic to corn so there is is that lol.

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      I don't see how cornstarch could alter the test results. Where did you read that?
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    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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