New To Gluten Free, Blood Test Negative

[bikegirl]

Hi folks, I'm Susie,

I've only been suffering from gut problems for a few short months, which started after a few Gynae operations (luckily that part of me seems to have recovered). I popped to to docs and had a negative blood test for Celiac, but he recommended gluten free. I've never experienced brain fogs, sickness or other extreme symptoms, luckily for me.

However, having gone egg and dairy free too only last week, my sudden reaction to accidental wheat intake last night (how on earth could I forget that couscous is wheat, daft woman?!) made me research online.

This forum is an eye opener as I had no idea that blood tests might be inconclusive, or the difference between the labs.

The single reaction I get is a severely bloated abdomen which feels like a lead weight. This morning I'm experiencing sharp pains mid-abdomen and too much discomfort to lie on my side. So I guess that Sunday lunch with a bunch of friends is off :-(

It's very clear to me that wheat is utterly out of my life, even traces seem to affect me. I'll try to reintroduce eggs soonish, and maybe give dairy an go, but any reaction which cuts out my ability to lead an active and social life is not worth having.

My finance is sceptical of reaction to traces, but very supportive. We've not cut out his gluten intake, though his snack of eggy bread with maple syrup last night made me green with envy!

I've started a consultation with a gut specialist in the UK (I'm English and live in Spain) who has suggested posting my poo to the US (admittedly he called it 'sending a stool sample to a lab) so now I'm going to get the name of the lab and check back on here.

To be honest, I'd tend to agree with many opinions on here which seem to suggest no more proof is needed if I'm reacting so badly... even though I'm not as extreme as many of you. I now intend to tell people I am a celiac as they are more likely to take it seriously in restaurants and with friends, etc. I do have medical insurance so should be ok to get more tests done, BUT... I had no idea I'd have to eat gluten for a while first. Is this truly the case? I can't imagine doing that after reacting so badly last night. Social life and the ability to do my job (I'm currently the sole bread-winner) are far to important to suffer a few weeks of this bloated discomfort.

Can anyone advise on this? I'll Check in with my consultant tomorrow. In the meantime, thank you for posting all of your experiences here, I'm finding them invaluable.

Susie

[Pandoranitemare]

I have been having increasing problems over the past few months, until it reached the point that following some online research I guessed that gluten may be the cause, so I went gluten free for a week. Whilst it didn't resolve everything, I did begin to see some improvements. However, I then discovered that in order to test for celiac the person must have been fully eating gluten (and there was much conflict about the duration and quantity!) So, I decided to quit with the gluten free and make a doctors appointment.

Despite having only been gluten free for one week (3 weeks prior to my appointment) my doctor has still insisted on my doing a gluten challenge for 4 weeks before doing the blood test.

It would seem (from what I have read) that the blood tests alone are not always 100% reliable, and even less so if the person has low or no gluten intake in the time leading up to the test.

I am finding it very hard to really make sure I get the maximum amount of gluten in my food, but keep telling myself it is necessary, and if I do it now it is be better than being gluten free for much longer and then having to maybe make that choice to eat gluten again for the sake of testing further down the line (as some people have faced) I understand that for a lot of people going back on gluten is just too hard, and makes them too ill.

I am just holding on to continuing to be ill in the short term, so get better in the long term, hopefully with an diagnosis.

Good luck with your diagnosis journey.

[squirmingitch]

Susie, you need to be eating the equivalent of 3-4 slices of bread everyday for 3 months (as I understand it) to get the max. out of the tests. And you may still turn up negative. You may be truly negative for celiac or may not be. You may have a wheat allergy. Does it matter? You said wheat is utterly out of your life forever. So you could do your own challenge as to if it's just wheat or if it's gluten. You could try ingesting some barley or rye & no wheat. If the barley & rye give you problems then you can say it's gluten.

[ciamarie]

Susie, you need to be eating the equivalent of 3-4 slices of bread everyday for 3 months (as I understand it) to get the max. out of the tests.

She had only been gluten-free for 1 week before going back on gluten for the testing, so I'd suspect that 4 weeks back on gluten should be fine?

[squirmingitch]

" I do have medical insurance so should be ok to get more tests done, BUT... I had no idea I'd have to eat gluten for a while first. Is this truly the case? I can't imagine doing that after reacting so badly last night. "

I was responding to this statement of hers.

[ciamarie]

" I do have medical insurance so should be ok to get more tests done, BUT... I had no idea I'd have to eat gluten for a while first. Is this truly the case? I can't imagine doing that after reacting so badly last night. "

I was responding to this statement of hers.

Yeah, I think I was confusing the issue, after I went back and looked at the thread. Sorry, and never mind.

[bikegirl]

Hi, in fact the blood test was before going gluten free - I had no clue why my abdomen was so sore. Since then the improvements have been there, but as I'm pretty new to a gluten free diet it's hard to stick to it. It really has to be worked at, it seems. More than 24 hours after my couscous accident last night, my belly is still swollen and uncomfortable. I'm just hoping it doesn't take too much longer to settle down again.

That's the problem I'm having really - I don't know how long it'll take to recover, or even if I've eaten something else that my tum doesn't like. I tried cutting out gluten starting a month ago, but didnt understand how much food contains it - rye, dried figs with a flour coating, some baked beans. So I went label-crazy and also ditched eggs and dairy a week ago. But a little error means another week, maybe more. It does seem preferable to going back onto gluten to prove the point though. I think....

[squirmingitch]

No problem ciamarie --- it happens. Blame it on brain fog.

Susie, there is a VERY steep learning curve with a gluten-free diet. We ALL make mistakes. We've been eating one way for our entire lives & suddenly there are all these rules. We can't learn them all overnight & even if we could then we couldn't remember them all ALL the time. Our minds just don't transition that quickly. I'm doing low iodine right now & yet the other night I made corned beef for dinner. DUH!!!!!! Talk about iodine intake. The salt in it! Oh my!

The best thing you can do is read as many posts on here as you can. That will help you a great deal. You will learn much. And ask questions whenever.

[bikegirl]

Susie, there is a VERY steep learning curve with a gluten-free diet. We ALL make mistakes. We've been eating one way for our entire lives & suddenly there are all these rules. We can't learn them all overnight & even if we could then we couldn't remember them all ALL the time. Our minds just don't transition that quickly.

The best thing you can do is read as many posts on here as you can. That will help you a great deal. You will learn much. And ask questions whenever.

Thanks, I'll keep at it - I have to.

As a matter of interest, what's the deal with soy sauce? Do some brands come gluten free and other with?

[squirmingitch]

I haven't gotten into soy sauce myself as I never cared for it pre-gluten-free. But from what I gather reading on here normal soy sauce is off limits HOWEVER there are gluten free soy sauces. As a matter of fact I was just making some online orders for gluten-free stuff & ran across a company that sells it but I'm afraid I didn't pay much attention to it or I would tell you which company it was but I don't remember.

Put soy sauce in the search box at the top of the page or gluten free soy sauce & you should come up with some answers.

[bikegirl]

I haven't gotten into soy sauce myself as I never cared for it pre-gluten-free. But from what I gather reading on here normal soy sauce is off limits HOWEVER there are gluten free soy sauces. As a matter of fact I was just making some online orders for gluten-free stuff & ran across a company that sells it but I'm afraid I didn't pay much attention to it or I would tell you which company it was but I don't remember.

Put soy sauce in the search box at the top of the page or gluten free soy sauce & you should come up with some answers.

Thanks, I'll check it, but will avoid all soy for now as my gut hasn't settled yet. I'm really keen to check out hormonal imbalances and parasites, etc after my new consultant recommended I download and read this guy's book - Open Original Shared Link

The book is an eye opener and fascinating, as I can see myself in it. I'll let you know how it goes with all the tests and subsequent treatments - got to be worth a go.