what should i do?

[andyuk]

Hi all,

I did originally post this on a different board but got bombarded mainly with just go gluten free don't bother getting a diagnosis. Which is all well and good but it doesn't exactly provide me with the definate answer i would like since my two youngest children both have major D problems too. The youngest who is 2 has never had what you could call a none D bowel movement yet. My mum also has had stomach related problems for a long long time and was told it was IBS and it was left at that as far as i'm aware.

Ok so here is a bit of background... Around 5 year ago i had a panic attack a really bad one or i think it was a panic attack atleast.. I had just finished eating my tea ( frozen shepherds pie with loads of cheese put on top ) Then decided i was gonna wash my mess up then all of a sudden my heart started pounding out my chest and really felt ill..

From that day i couldn't eat many foods without it giving me D like you can't believe and feeling really rough.. I started to eat chicken and boiled potatoes as it is pretty bland and was fine when i ate that..

Then i started with allsorts of other things now other than depression i never ever used to get sick it didn't matter what the kids got i was the 0.1% domestos couldn't kill now i always get either D or constipation really bad gas, irritability, dry skin still have depression my knees hurt like hell somedays, i get stomach pains, blurry vision i go dizzy a lot ( not blood pressure had it checked and it is perfect apparantly ) and the list goes on...

If i eat ice cream i get real bad D i feel absolutely terrible most days i daren't eat shredded wheat or any other heavy wheat product last time i did i regretted it for 2 days after i wake up in the morning and feel like i have been awake all night and finish up falling asleep for an hour around 4pm..

I have had blood tests done for coeliac but when my dr did them i was doing a gluten-free diet at the docs reccomendation so the results came back negative and i left it at that at that point due to the fact that the wife has gotten to the point were she is sick of hearing it and gets annoyed when i start on about it again...

I just don't know what to do next i have been to the docs more in the last 5 years than i have the other 24 i have been alive... I am wary of going to the docs again with this as i am sure they think i am a hypocondriac by now.

I have considered the enterolab tests but due to a lack of funds i cannot afford to get the whole of the ones relevant done and have no clue which one if any to get done...

I have maintained the whole 5 year that this has to be an allergy to one food or another since my two sons have a bad stomach too but the wife thinks i'm going mad and am just looking for something to be wrong with me.

Sorry for the huge post i just don't know what to do next and i really didn't think the just go gluten free and forget a diagnosis was the right thing to do so looked for somewhere else that maybe i may get better answers from.

[cardine45]

Welcome to the board, and I'm so sorry to hear about everything you've been going through. I know most of us here will recommend getting tested if at all possible. People usually have an easier time believing you if your doctor was able to back up the findings with medical tests (this may help with your wife). Celiac is also genetic, so it would give you a better idea for your children.

I know a lot of us here have also been labeled hypochondriacs pre-diagnosis. The symptoms can be so obscure, and they're not always obvious to outsiders.

I would almost be concerned that there was something wrong with the shepherds pie unless it was just a coincidence that it happened after eating it. Often times, the symptoms will present themselves after a huge event, so it's not surprising that a panic attack could have brought it on. I've heard far too many stories of people who have life-long symptoms from eating one bad thing, so you may want to get tested for other issues too in case one of them is causing issues. It's possible that you have 2 factors in play, and going gluten-free will help you if it's just Celiac, but it may not help the other.

I don't have time to give more advice, but I'm sure others will help out with advice too (weekends are kind of slow here, so don't be surprised if you don't get much help today). Just remember that we are not medical doctors, but you can find a lot of helpful advice and stories of experiences that we've all had too.

[rpf1007]

Welcome! I hope you find some good advice here.

Are you currently consuming gluten or are you trying to stay away from it? Since your first tests were done while you were gf- that could be the reason they are negative. You should be consuming gluten for about 6 weeks I think to make sure the tests are accurate. I don't have any personal experience with the enterolab tests, so unfortunately I can't help you with that. There are some places that do have centers that offer free testing at certain times of year. I'm assuming you are in the UK? I also heard that you could buy a test kit at Boots- but I don't know the specifics on accuracy etc. It might be something to look into.

Have you talked to your pediatrician about your kids? I think the testing can be inaccurate for very young children, so that is something else to keep in mind.

Whether you decide to get tested or not- is a personal choice. It does sound like you are searching for answers though and re-testing while consuming gluten might be a good idea. Once people have gone completely gf it can be very very difficult to do a 6 week gluten challenge and many in the end just decide to stay away from gluten and whatever else is causing the symptoms.

Good luck!
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Rachel

[andyuk]

I am indeed consuming gluten now. I have spoke to the doctors about my sons however they are very unhelpfull with them they say that since they are not dehydrated they don't feel it is a concern.

[rpf1007]

I'm sorry you are having difficulty with the doctors. You may try to consider self-testing. My brother lives in the UK and his doctor is refusing to test him, eventhough I am positive. Please feel free to ask questions and we can try to help you out as much as possible.
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Rachel

[andyuk]

Just thaught i would let you know about my trip to the doctors today..

I went and saw the doctor my wife always sees and after explaining what has been going on the last few years she has ordered a full celiac panel to be done and also a test for fecal reducing subastances to see if i have a problem with lactose.. Maybe i will get somewhere with this doctor

[rpf1007]

Very encouraging! I will keep my fingers crossed that you will get some answers.
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Rachel

[Gillie]

Hi Andy, just thought I would add to your post being from the UK. I have had digestive problems for many years, and after having my gall bladder out and then diagnosed with diverticulitis thought things would improve but they havent. Five years ago went semi gluten free, things improved dramatically, the only time I became ill was after eating something with gluten. Anyways cut a long story short in March went to Germany for a long weekend, threw caution to the wind and ate anything and everything! what a mistake. On my return home first symptom was this muzzy head, just like living in a fog! mouth ulcers, aching joints and fatigue beyond belief, I wanted to sleep my life away. My tummy was not too bad, but I am used to being bloated and abdo pain so could deal with that. Spoke to GP she did not think that my symptoms were all associated with Gluten!! Had a blood test and it came back negative (but it would because I had reverted to my GF diet) (Which I did tell her) However due to my fatigue and aching joints I requested a referral to a Gastro for an endoscopy, reluctantly she has, I have an appointment at the end of this month. So, I am on the gluten challenge (gluten challenge thats an understatement) yep I will have been on it for 11 weeks by the time I see the Gastro and the only thing that has improved is the muzziness and the mouth ulcers, aching joints and fatigue still difficult to deal with. I have done a lot of reading over the past weeks on Coeliac disease and apparently being on the gluten diet for nearly three months might still give a negative biopsy, but that is as far as I go - roll on August when I can return to a total GF diet and hopefully have the energy to return to my normal life, to working, to long walks with my dog and the gym. I do hope your GP sympathises with your condition? I know, from experience what some peoples perception of Coeliac disease is - oh its just a wheat intolerance just like dairy, little do they know hey.
I wish you all the best with your journey to identify what is making you feel so ill.

Gillie (The Welsh Lassie)