Advice Re: Negative Tests And Symptoms

[kel72]

Hi, please bear with me, this might be a bit long! I have had crohns disease for approx 12 years and i had a bowel re-section around 10 years ago. since then i have had constant diarreah and other symptoms which i have always attributed to crohns. Purely by accident i discovered that when i didn't eat bread most of my symptoms stopped (discovered whilst dieting). I started eating it again and they all came back. So i stopped again and have paid close attention to what i eat and it would seem anything wheta based is a big no no, i tried eating gluten free bread which also affected me so i thought maybe the yeast? Anyway i had the blood tests for coeliacs and they were negative but i have since found out that i should have been eating gluten when tested but i had stopped eating it several weeks prior to the test. My sister and my aunt both have coeliac and my symptoms are actually worse than my sis who can eat wheat sometimes whereas i have quite a violent reaction now if i eat even a small amount. Do you think it is possible that the tests were incorrect? I am now 15 weeks pregnant so i'm not willing to eat wheat again in order to repeat the tests accuratly. i have also now found that when cornflakes i get a reaction. I'm sorry it's so long but i wondered if anone could offer advice? Kelly x

[tarnalberry]

If you're celiac (or "just" gluten intolerant), it'd make sense that you get a reaction from corn flakes - outside of one or two specifically gluten free brands (like a couple of Nature's Path varieties), they have gluten in the form of barley malt.

Yes, it's quite possible that your tests were inaccurate. I was gluten free for only a couple weeks before my blood tests, and my blood results were inconclusive, but a dietary challenge was pretty obvious. That alone was enough for me (if something hurts, stop doing it!), and enough for my doctor at the time to concur that I probably had it. I've not had any doctor try to fight with me over it, but any new doctor whom I've mentioned this to I've just said "And I'm gluten free as gluten bothers me." It has never been an issue.

[GFinDC]

Hi Kelly,

Wheat is one of the grains that celiacs have to avoid. Rye and barley are just as bad, and for some people oats are a problem too. I'm surprised your sister thinks she can eat wheat sometimes, because if she has celiac she would be doing damage to herself by doing that.

It is very possible for the tests to be wrong. They are not 100% accurate in the best of situations. I have read on other web sites that sometimes people with Crohn's improve on the gluten-free diet. My younger brother had Crohn's and I have celiac.

Celiacs often have addiotional food intolerances beyond gluten. Any of the top 8 food allergens are common ones, but also nightshades, potatoes, and tomatoes. Some gluten-free breads have soy in them, and lots of other gluten-free foods also soy. That may be what bothered you with the bread. Although I have also read that some people with Crohn's have antibodies to bread yeast. So it could be yeast also. If you want to try the gluten-free diet out right, here is a good way.

Start by planning to stick with it for at least 3 to 4 months.

Don't eat any, zero, no processed foods, even if they are labeled gluten-free.

Don't eat any dairy.

Don't eat any soy. This should be easy since you won't be eating processed foods. Soy is in a ton of processed foods, just like gluten and dairy.

Make your food from whole ingredients at home.

Don't use shared cooking pots, pans, utensils, toasters, colanders, condiments, etc.

Don't drink any grain derived alcohol. Rums, wine, tequilas are not grain derived (generally, always check though).

Don't take any meds or vitamins that have gluten or wheat or barley or oat grass ingredients.

Don't use spice blends, single ingredient spices are the way to go.

Learn to cook meals you like from whole ingredients. There are lots of recipes here in the cooking forum.

If you still have problems check into an elimination diet. There are threads here on how to do them. Basically you start with a few foods and add one new food every 3 to 4 days. Some people say 5 days though.

Liquid B-12 might be a good thing to try. Untreated celiacs often have vitamin deficiencies. Vitamin D and also iron might be low.

And keep coming back here for advice and support. There are some a-ok peeps here.

[kel72]

Thank you for the replies. My sister eats bread occasionally and she eats biscuits, sauces etc which amazes me as i wouldn't dare touch them. She's had celiacs for about 20 years. I have many other symptoms which i didn't list such as extreme tiredness, a persistant cough which went when i stopped eating bread but came back when i started eating cornflakes, middle back pain which comes and goes depending what i eat and psoriasis which has started to clear since cutting out gluten.I don't particularly want to have celiacs but it does frustrate me that the nurse didn't advise me that the tests may not work properly since i wasn't eating gluten. Either way i guess i have resigned myself to the fact that i have to watch my diet although that is easier said than done with crohns as well! I also didn't realise that soy could affect me so thank you for that information. Kelly.

[Nilnala]

Hi Kelly,

Wheat is one of the grains that celiacs have to avoid. Rye and barley are just as bad, and for some people oats are a problem too. I'm surprised your sister thinks she can eat wheat sometimes, because if she has celiac she would be doing damage to herself by doing that.

It is very possible for the tests to be wrong. They are not 100% accurate in the best of situations. I have read on other web sites that sometimes people with Crohn's improve on the gluten-free diet. My younger brother had Crohn's and I have celiac.

Celiacs often have addiotional food intolerances beyond gluten. Any of the top 8 food allergens are common ones, but also nightshades, potatoes, and tomatoes. Some gluten-free breads have soy in them, and lots of other gluten-free foods also soy. That may be what bothered you with the bread. Although I have also read that some people with Crohn's have antibodies to bread yeast. So it could be yeast also. If you want to try the gluten-free diet out right, here is a good way.

Start by planning to stick with it for at least 3 to 4 months.

Don't eat any, zero, no processed foods, even if they are labeled gluten-free.

Don't eat any dairy.

Don't eat any soy. This should be easy since you won't be eating processed foods. Soy is in a ton of processed foods, just like gluten and dairy.

Make your food from whole ingredients at home.

Don't use shared cooking pots, pans, utensils, toasters, colanders, condiments, etc.

Don't drink any grain derived alcohol. Rums, wine, tequilas are not grain derived (generally, always check though).

Don't take any meds or vitamins that have gluten or wheat or barley or oat grass ingredients.

Don't use spice blends, single ingredient spices are the way to go.

Learn to cook meals you like from whole ingredients. There are lots of recipes here in the cooking forum.

If you still have problems check into an elimination diet. There are threads here on how to do them. Basically you start with a few foods and add one new food every 3 to 4 days. Some people say 5 days though.

Liquid B-12 might be a good thing to try. Untreated celiacs often have vitamin deficiencies. Vitamin D and also iron might be low.

And keep coming back here for advice and support. There are some a-ok peeps here.

From my own experience, I would recommend having a doctor check your vitamin b12, vitamin D, and electrolyte levels (including the ones they don't usually test like magnesium and phosphorus, just to be sure that you are covered, and especially with that vitamin D, if it is low enough, you may need to have a higher prescription level dose to stay healthy.