Wheat allergy or CD - wdyt?

I've always believed myself to be wheat allergic but am now wondering if I was misdiagnosed:-

Just repeating here a little bit from another thread to give background:

I have had wheat and dairy allergy for over 30 years but last year I found my eczema just wouldn't settle down (it is set off by my food allergies). I took a good look at my diet and regressed it, especially my breakfast ingredients, and had only "safe" (not officially gluten free but reliably sourced) oats and corn based things. My eczema cleared up and I thought "job done". I then started with IBS (morning diarrhoea) and I can't identify consistently any triggers. Found couple of things that make it worse (xanthan gum, coconut milk......) but nothing that seems to really hit the nail on the head.

I've just been told I've got the gene variants for CD and I'm starting to wonder if my original diagnosis of wheat allergy was wrong. Originally the things in favour of food allergy and not CD were: severe eczema, not the official CD rash, atopic with very very high IgE and other allergies (dust etc), no digestive (GI) symptoms but lots of itching, no weight loss. However, I have always been iron deficient (but normal B12 and folate). I've now read things that say atopy and eczema can co-exist with CD. And, looking at my modern day symptoms, I do have GI symptoms (reflux for 6 years and "IBS" for 1 year). I've just been told my gene variants put me at risk of CD.

There's no way I can do a wheat eating challenge (unless someone puts me in hospital and looks after my job, my house and my kids for 3 months - and even then I'd go crazy from the symptoms!).

Anyone been in this situation - wdyt(what do you think)?

MMM

I’m on Zantac for the reflux and take Imodium when needed (occasional).

By hit the nail on the head I mean I can’t pinpoint a specific and consistent cause for the IBS, but it clears up and then relapses, which makes me feel as if there is a specific cause that I’m not detecting!

Overall health is OK, I’m probably menopausal and a bit tired!

Diet wise I avoid the foods I’m allergic to but we have young children and we eat as a family and cook most things from scratch. The kids eat wheat bread but I have my own gluten free and wheat free bread. I used to be OK with rye bread and lots of oat based things. I stopped having the rye due to wheat contamination which was triggering my eczema (but not IBS). I am careful where my oats come from but do not buy official “gluten free” oats as up until last year I was very well on a rye-oat-barley-corn based diet. It was after “fixing” my diet last year, which sorted my skin, that the IBS took hold!

I'm sure you're right - my reflux started after repeated courses of antibiotics for cystitis. I'm not too bothered what name it has either - just want to be the boss of my own symptoms!

We make wheat free bread for me, sometimes with yeast, sometimes not, sometimes home design recipes (don't always work!) and sometimes shop bought mixes.

I don't use any supplements as they almost all give me aggravation of the reflux. I manage some intermittent multivits and linseed oil or evening primrose oil from time to time. Used to take milk thistle as found it helped the reflux but stopped pretty much everything when the IBS began!

To the original OP (Mudmagnetmum),

If you have done your research, you already know that you have to be consuming gluten daily (equivalent of 1 to 2 slices of bread daily) for a period of 8 to 12 weeks for the celiac blood panel. The time is less (2 to 4 weeks) for an endoscopy (obtaining biopsies). It sounds like you have decided to NOT do a gluten challenge for a variety of reasons. I get that! The University of Chicago's celiac website is one of the best around (the world) for reliable and current information.

Over 30% of the population has the genes to POTENTIALLY develop celiac disease. Only 1% of those actually go on to develop it. The gene test just helps exclude celiac disease and should not be used to diagnose it. Heck, my kid has the genes, but she doesn't have CD!

CD symptoms can come and go....present differently throughout a the course of your lifetime. Many never have any symptoms at all (called silent celiac disease).

If you suspect celiac disease and refuse to test for it, you can (not recommended) go on a gluten free diet. Let me tell you it is hard! No eating out for at least six months. Adhering to whole foods diet that is filled with naturally gluten free foods (e.g. veggies, meats, fish, fruit and nuts). Test for lactose intolerance that often accompanies CD due to damaged intestinal villi. Keep a food diary of other intolerances for the same reason -- a damaged gut. Check and verify that all medications, supplements, etc. are gluten free. Study up on the diet from reliable sources and not blogs of mis-guided folks who think gluten free is a healthy diet. The GF diet is healthy for celiacs or those with Non-celiac gluten Intolerance (no actual test for this condition except to rule out celiac disease). My house has two people with CD. Our house is 100% gluten free. Our kid gets her gluten fix outside of the house. So, watch for pet food, gluteny kids, spouses who want to kiss you after downing a beer, can all trigger a celiac-flare up that can last for days, weeks or months (some years!)

I wish you well!

ya mum, my sneaking suspicion is that the manufactured "GF" stuff sold in the stores is as bad or maybe worse than the gluten itself - at least for some folks ----

most of the time, my diet consists of "real" food - fruits, veggies, eggs, goat milk, beef, and wild caught fish - occasionally i'll venture off that plan, but very seldom - simple works best for me -

i'm fortunate that so many things do work - but it took time for my gut to heal in order to eat the way i do - i don't feel like i'm missing out on anything - i have a local GF pizza once a month, and a meal at a local Mexican restaurant once in a while - and that's it as far as eating out -