I Feel A Bit Like I'm In No-man's Land

[ShellyB]

Hi everyone

This is all very new to me and at the moment I'm not sure what to think. For over 5 months I have been experiencing gastric problems and my diet has been vastly reduced to things which don't cause me problems with acid/burning sensation in my stomach. I have developed several allergies over the last 3 years (including red wine

My doc prescribed Lansoprazole but I haven't felt happy at being told I'll just have to take it long term without any further investigations. I don't do meds unless I know there is good reason for them and I instinctively felt this was just masking something which wasn't healing.

I had already mentioned to my Doc that my Aunt is coeliac and my DS had non-coeliac wheat intolerance (was very poorly but thankfully 'outgrew' it apart from a flare up at puberty) and by the way I am of Irish ancestry but he said that although he thought I was likely wheat intolerant I wasn't coeliac........

Feeling cold, tired, finding hairballs in the bath when I wash my hair and with pains in my feet, back and pins and needles I went back (yet again) for full bloods and I am (for the second time) anaemic (ferritin). Took the iron pills for a week and my gut flared up again and I was told to stop taking them immediately, and by the way I think we need to get you tested for coeliac and referral to a specialist.

So here I am. I've had the blood tests and go at the end of the week for the results pending referral for an endoscopy. Decided to look into coeliac a little more and cannot believe things I have just accepted as normal for as long as I can remember are not 'normal' at all. The more I read the more I am convinced, even to the time in my 20's I went on a diet which excluded wheat for a week and felt soooo much better. I could kick myself as I remember my son saying to me 'but I thought everyone's tummy hurt like mine did so I never said anything'

I don't want to jump to any conclusions hence me feeling like I am in limbo, but if I am coeliac (or even wheat/gluten intolerant) it answers so many questions. I guess I would just be glad to find out the cause of all my problems even though it would carry lifelong implications.

Does anyone else feel like they're in No Man's Land with not yet knowing?

ShellyB

[dbmamaz]

I do . . .i took a sensitivity test (A.L.C.A.T) 2 weeks off gluten and casien and came back mildlly reactive to both, and reactive to several other foods. I took a celiac panel 2 mo off gluten, and it came back negative, which means very little. I went to the allergist and tested positive for wheat, barely, malt, yeast, milk, and 90% of all foods he tested me for.

Well, going off gluten and dairy cleared up most of my intestinal symptoms, got rid of headaches and anxiety and depression. Going off all my reactive foods cleared up more intestinal symptoms as well as some congestoin.

Well, i doubt i'll ever eat gluten again, but . .. i still am not entirely sure what it is . ..

[constantly questioning]

Hi Shelly.

Good luck on your tests. I am also in a limbo state. I have been going to doctors for my problems for three years, now. I have been gluten free since some time last year when I had the startling revelation that I seemed sicker after eating pizzas, breads, etc., I didn't know exactly what was wrong with me, but I knew it was something caused by what I was eating. Well since I went gluten free, my bloodwork came back negative for celiac (I skewed the test I guess). So I am not officially diagnosed, but I know that if I stay away from gluten I feel better. If I do eat it by mistake, I get very down, dark circles under my eyes, I get that big belly, and get sick, sometimes for days.

I guess you just have to wait for your test results. However, gluten free seems to help a lot of people. And, at first you may have to give up dairy, too. Best wishes.

[ShellyB]

Hi Guys

Thanks for your replies, oh for a crystal ball for us all

The results of the blood test for coeliac came back negative and my GP was so vague about the wheat intolerance this time around, he just asked me how I dealt with my DS when he was wheat intolerant so I came out of my appointment feeling like I had gone 2 steps back. He is referring me to a GI for further tests though and I am going to go armed with as much info as I can as I am not sure what the doc actually took on board when I told him how I was feeling (heck, he even referred me to the wrong department at the hospital - I have zero confidence in him now Thankfully the hospital have sorted it all out but I have a few weeks to wait for my appointment (and eat wheat/gluten)

I was so down when I got back home I sent off for intolerance testing (IGg). Result

Intolerant to wheat, eggs, almonds, buckwheat, chilli peppers, coconut, garlic, peanuts, some green leafy veg (mustard mix) and garlic

Also borderline reaction to corn, gluten, hazelnuts, millet, molluscs, mustard seed

I feel a bit shellshocked but to be honest the foods are those I have suspected were a problem but couldn't be sure, I couldn't see beyond the wheat. Explains why I feel so bad after eating them but the eggs surprised me..... so I ate one last night. Within 20 mins I felt bloated, sick, D.... I always eat eggs with bread/toast and just assumed it was that, not the eggs, guess the experiment proved otherwise

Oohhh I have a lot to learn. Am feeling a bit overwhelmed with it all just now and really would like to get on with wheat/gluten/egg free as a start. Still, at least I can deal with the eggs.

Have just found out there are at least 6 of my family who are diagnosed by docs as wheat intolerant, 3 of us are currently being tested for coeliac and have similar problems and it seems likely there are 3 more so it will be great to help them before they get too bad.

Guess I'm going to have to be inventive with the cooking from now on...... There is light at the end of the tunnel

ShellyB

[dbmamaz]

I went thru two rounds of broad food testing (see siggy) and each time, i was a bit overwhelmed at how many foods I had to cut out. But once I did cut everything out, I just felt so much better . . . the adjustment is definitely worth it.

[horsesjapan]

I am in limbo too. My tests came back inconclusive I guess. I was positive to the IgG anti-gliadin, but negative to the IgA anti-gliadin. Also negative to the anti-endomysial IgA. But (and it's a big BUT) they didn't test Total IgA or the Ttg IgA test. I am waiting on my referral (the doc didn't put it in like he was supposed to, so a week wasted, now I need to check and make sure he did put it in) to the GI and trying to eat enough wheat/gluten till my appt but it is hard. Unless I eat out (we live in Italy, so when we eat out it's easy to get enough bread, pizza, and pasta lol). My ds2 is IgG reactive to wheat, dairy, soy, egg, and malt so most of our family meals are made so we can all eat the same thing. I worry I'm not consuming enough gluten to make the tests accurate. But with the + IgG test, I will go gluten free as soon as testing is done and see how I feel!

Hang in there!

Nancy

[constantly questioning]

Hi SHelly,

Looking at my old posts and I saw this one. I have been off the board for awhile now. LIving Gluten Free and feeling so good that I almost thougth I didn't have an intolerance problem. Little did I know by cheating how sick I would get again. Anyways, how are you doing? Did your tests ever come back gluten intolerant?