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Confussed Can You Help Please?


poppet

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poppet Rookie

Hello i am poppet a mum to 3 great kids, i have ulcerative colitis and maybe wheat/gluten allergy, i have been having a few problems with things and thought i would drop in to see if you could help me please, this is a long one so be ready...

I have been tested in march for wheat/gluten allergy the specialist who deals with my ulcerative colitis suggested i go wheat/gluten free while i see her next in november...

Fine i said i did as she said and after 2 days i felt miles better, a bit more energy not crampy all the time, go to toilet 3-4 times a day instead of 25 times, i lost 3 and half stone since i have been on it, trouble is it is very expensive...

One bread loaf cost £3.33, ok its a small price to pay for health and worth it but it is the not knowing...

I am anemic so i have to take iron, i know when i am low on iron and start taking it again, so i start taking it last week what normally gives me constipation has given me the opposite..

I phone up the chemist and ask them if they are what free she didnt know gave the number to the manufactuer so i phoned them and they do contain wheat i phoned the chemist back to tell them as they could give some one with a servere reaction anaphalactic shock, again she didnt seem interested...

I phoned my gp and told them they contain wheat, she suggested i phoned up the specialist and ask for my results to be faxed to the gp, the speacilsts secretary couldnt do this i have to wait while november, i mean come on these are my results why cant i have them???

I am so peeved of at the minute, the secretary didnt want to be bothered by me and seemed put out that i phoned up!!!! what a snob i hope she never gets ill, she said all i can say to you is if you have a sandwich you will be ill!!! is she confirming my allergy to wheat or is she safe guarding herself, this is so unreal you have to laugh about it...

So after 7 calls yesterday i am a still none the bloody wiser, and if my gp repeats the test it will come back negative as i have been wheat free for 6 months now!!!

Also does anyone know if cooking oil, has wheat in it, i used to be ok with chips but now i get all crampy if i eat them but if i mash them i am ok, is it the oil?..

So many questions with no one to help me, hope you can love poppet x


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tarnalberry Community Regular

I would continue to work on getting those results. You may have to be persistent and you may have to deal with a bad attitude, but keep on it. It's true that being gluten-free for so long will turn up positive. (The tests are looking to a reaction to gluten; if you haven't had any gluten, you can't have had a reaction to it.)

The chips could be fried in the same oil as something that is breaded - if that is the case, they will be contaminated and make you sick.

As for the cost, it seems pretty universal that substitutions for gluten-free food are expensive, because we're a niche market, and there isn't enough demand to keep prices low. It means that it'll be cheaper to do what you can to find foods that are naturally gluten free. This, in turn, may mean more cooking from scratch, but that too is healthier. (Also, and one of our UK members will have to check up on me here, I think that you can get a prescription from the doctor to cover the added cost of specialty gluten free foods.)

Welcome to the board! You'll find a lot of great advice! Most of us are in the US, but there're are a number in the UK who can give you some region-specific advice.

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
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    • JoJo0611
      Thank you this really helped. 
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