Wheat allergy or CD - wdyt?

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mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 7/26/2016 9:40 AM (GMT -6)   
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

TroubledTurds
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Date Joined Jan 2004
Total Posts : 7964
   Posted 7/26/2016 12:25 PM (GMT -6)   
are you currently on any meds ?

when you say "really hit the nail on the head" what do you mean ?

how is your overall health ?

do you eat a certain "diet" like paleo or gaps ?
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)

mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 7/26/2016 3:00 PM (GMT -6)   
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!

TroubledTurds
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Date Joined Jan 2004
Total Posts : 7964
   Posted 7/26/2016 3:48 PM (GMT -6)   
it sucks that trying to be healthy and pain free is so difficult -

my body wasn't happy till i got rid of all grains - did ok GF, but never quite got there till the rest were gone -

do you make all your own breads ?

do you use any vitamins, supplements, or probiotics ?

i don't have a clue on the CD front - i tend to dismiss named diseases - IMO, most problems come from the gut being messed up for one reason or another, whether you call it CD, IBS, IBD, or whatever - pretty sure years of antibiotics screwed mine up - unless i'm knocking on heavens door, i'll never take them again -

wish i had some helpful suggestions - i know what works for me, but what i do may send you into a tailspin - we all have to fight tooth and nail to find our own path to well being, while dodging a hellstorm of obstacles !
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 7/26/2016 4:59 PM (GMT -6)   
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!
GERD (6 years and counting)
Past 1 year - IBS
Lifelong stuff: Food allergies/intolerance, eczema, asthma

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7964
   Posted 7/27/2016 5:09 AM (GMT -6)   
have you tried any fibre pills ? they help lots of folks, including my wife, with ibs symptoms -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 132
   Posted 7/27/2016 2:48 PM (GMT -6)   
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!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 7/28/2016 2:33 PM (GMT -6)   
Thanks Cyclinglady. I have been on a "low allergen" diet for 30 years - no wheat, egg, cow's milk, food additives or colourings, and that always used to keep me well. The things that have turned up in my middle age (reflux and IBS) may be unrelated to diet, unrelated to each other, hormonal, or just plain unknowable.

My consultant recommends going fully gluten free (seeing as I live almost but not quite gluten free these days with only oats) as it is not a massive undertaking from the position I am already in.

There's no way I could go back to eating wheat, as I would be too unwell and cannot have that amount of time off work.

I do think my IBS reacts to the so called "Free From" products that have filled our supermarket shelves of late - not the simple stuff like corn pasta but the things where when you read the list of ingredients you don't find things that would be in your own kitchen cupboard! I do try to home bake but don't always have the energy and give into temptation during the weekly shop. I have a sneaky suspicion that things like inulin, xanthan gum and guar gum may be disagreeing with me somehow. Coconut milk definitely sets the IBS off, as does anything with added fibre in the form of chia seed, linseed etc.

MMM
GERD (6 years and counting)
Past 1 year - IBS
Lifelong stuff: Food allergies/intolerance, eczema, asthma

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7964
   Posted 7/29/2016 5:17 AM (GMT -6)   
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 -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)
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