blue angel

  tmk said:

i got my endoscopy done on Aug 23rd and have yet to hear my results -- i went in to ask for a copy of them b/c every time i called, they said -- they're in, the doctor just hasn't looked at them yet. when i went to get a copy, they refused. i think it is so inconsiderate how they treat people, busy or not -- good luck w/ your results. i, myself, decided to go gluten free regardless of the biopsy results -- one week through now, and boy, do i feel tons better! give it a try

Best luck to you!!

Hi to all who replied. Just been to see my GP and he has gone mad. he says i should have heard something before now. He has advised me to go as gluten-free as i can,but can't yet give me perscriptions as they have to get the go ahead from the consultants.

He has asked me to make an appointment for next week and was personally chasing up while i spoke to the receptionist. He says they shouldn't have a right to rescope as they have left it for so long and left me getting more ill by the day. He was extremely concerned and also told me a positive ttga would not come back as positive if it was negative or would be highly unlikely. Problem i have now is finding what to eat

  mama2 said:

I would think by now you should be able to call them, they should have called by now. When I had my biop done they only took two and they cam back inconclusive. They never did the blood wrk?. But I had my results within 3wks or so. I hope you get some answers soon. sry I am not much help about the false neg stuff... I am still trying to figure that all out myself.

Thanks for your reply but can i just ask are you now diagnosed celiac disease. It's just that you said your biop came back inconclusive. What happened after that if you don't mind my asking?

I had a biopsy done 5/6 weeks ago after my TTg blood test returning positive for celiac disease.

I have all symptoms except diarroeha ( in fact the opposite). All i get told when i call is no results yet. Has anyone had to wait this long for biopsy results?

I forgot to add that the initial result while i was in the recovery suite was Gastritis and oesophagitis and that i may need rescoping as they didn't retrieve as many samples as they needed. In the mean time i am in constant pain but can't take gluten out in case the rescope (if needed) gives a false result HELP!!

Your symptoms sound very similar to mine and yes i feel like i'm going insane too.

I was diagnosed with IBS 4 years ago and only recently my doc asked me if i had ever been tested for celiac disease,only because all the meds under the sun hadn't cured my so called IBS. Needless to say i had blood tests and it came back positive. I then underwent a gastroscopy/ biopsy of my stomach lining to confirm it. I have been waiting over a month for the results but all i get is "we're still working on it". What is so complicated about finding out what a person can and can't eat for goodness sake. Like you i am in constant pain, tummy looks like a 6 mth pregnancy, itchy forehead severe joint pains, tingly hands and frequent hard motions, sometimes discoloured I am also dehydrated even though i drink enough. The problem i have is i can't take gluten out of my diet because they may need to repeat the biopsy as they only got two samples and needed 6. I have however booked with my GP tomorrow and if i don't get anywhere then i am going to take matters into my own hands as it's my body they are messing with and i don't want it past irrepairable. Good luck with your investigations and try to stay positive.

  confused said:

Sounds like you have DH, which means you do have celiac. If you want to conifrm it is DH then the best bet is for them to biopsy by the rash. Since your blood work was positive and you are now getting an rash i would stop eating gluten right now.

paula

Thanks for the reply Paula. I know what you are saying but the problem is the scope i had may need repeating so i have to carry on eating as normal. I am definately sure that i have issues with gluten now but the ttg was positive but the biopsy is looking different ( still waiting for the results). I have classic symptoms as you will see from my previous posts and getting more and more sick. If i go gluten-free now it may give a false result, i guess i just have to stick it out.

Hi people, well still no results . I just wanted to ask a couple of questions really. Recently when i eat bread, gluten foods i get a raised itchy rash on my left buttock and sometimes just above my eyebrow. Accompanied with my other symptoms ( see messages above) is this something to do with celiac disease. Also when they found gastritis and oesophagitis could this be what they needed to see to confirm it ??? i'm hanging in there but feeling quite ill at moment.

Ta folks you're all angels i will keep you posted

  dadoffiveboys said:

As a note to what Gemini said.. I have symptoms similar to yours.. I had multiple biopsies and I had NEGATIVE results - blood test and biopsy. However, I definitely have a gluten intolerance/allergy! Insurance wise, if you have celiac it DOES affect your rates (increasing them!) - so no official diagnosis is sometimes a very good thing - and I am not going to pursue getting it. Most GOOD doctors will give you an official diagnosis if you improve on a strict gluten-free diet. We changed our pediatrician for our children because the old one would not give a diagnosis w/o positive biopsy. The 'real GOLD' standard is when you feel better and have lack of symptoms - not a positive biopsy.... sometimes I think doctors are missing the boat!

I wonder if I could ever afford insurance if I had the celiac label added on to my heart disease (I also wonder whether the two are related...??)

Either way.. do what makes yourself feel better and ignore jeers. If you don't get an 'official' diagnosis and feel better - tell everyone you have celiac because you do .. and only you can know if you have it or not!

  Gemini said:

A history of Vitamin B-12 deficiency is a warning bell that a malabsorption problem could be the root cause. Vitamin B-12 is found mainly in animal products like dairy and meat.....it is not made within the body itself, just stored there. It is also used very slowly so you would have to be either not eating at all or have a malabsorption issue to become deficient in it. You do not need to go to a physician to buy good B-12 supplements....just make sure they are sublingual tablets and gluten free. You want to by-pass the gut until it heals and by placing it right under the tongue, it goes to the bloodstream.

The nosebleeds may be a Vitamin K deficiency as K helps to clot blood. A good doctor will do vitamin levels to see if this is the case. Don't go taking large doses on your own as it may cause a clotting problem. I have found from personal experience that Celiac can cause some pretty weird symptoms, ones you would never think are associated with celiac disease. It's amazing to follow the diet and see problems disappear like magic just by dumping the gluten out of your diet. It's also fun when doctors give you a weird look over the stranger symptoms and their disappearance....they really don't "get" it at all. Learn to trust yourself and what happens with your body.....you live there so only you will know for sure.

Hi gain, it's really great to share this with people alike It is so unpredictable from day to day. I will wait for full biopsy results and hope it wont be redone due to lack of tissue samples. Then when i see my doc i will ask him to put me on gluten-free diet to see if symptoms improve.I just don't want to label myself celiac if biopsy is neg i feel like a fraud almost. I much prefer a diagnosis and i hope that doc will give me one, one way or another thanks all ~keep you posted ps forgot to mention the malabsorbtion test came back at 14 don't know what that means really

  dadoffiveboys said:

I had equivocal blood results on only ONE test - negative biopsies.. and I had like 8 in the intestines, 6 in the stomach and 4 in the esophagus. I got a diagnosis of Gastritis and GERD - but when I went gluten-free all my symptoms - GERD, Asthma, Reflux, Uticaria, Neuropathy - disappeared- how can this be?

Btw - my only high test was for IgA Gliadin. My TTG was 'normal' at the highest range possible. My 2 1/2 yr old son (now 3) had failure to thrive and 'normal' blood results - he no longer has failure to thrive going gluten-free and gained 5 lbs since Feb 2007 (went from 25lbs to 30lbs!!). All four of my boys have it, and got off medicines and none have a diagnosis. As a side note - my dad who went undiagnosed (and btw the doctors REFUSED to test him) is now off all reflux and blood pressure medicine which his doctors vehemently refuse they were wrong but can't explain HOW that's possible. Unfortunately, he still has his 60% kidney failure from YEARS of improper diagnoses. If you have a positive TTG - that is a BIG indicator your system is on the verge of collapse and I highly recommend you IMMEDIATELY go gluten-free - do not stay on gluten just for the doctors to get more medical notes. I only wish I could have gotten blood test results for my father so I'd know how much the medical doctors don't know about this disease.

Hi all, thanks for that advice my findings on endo was oesophagitis grade 1 and gastritis moderate antral? could this be caused by the gluten monster too.

My symptoms i forgot to mention are

abdo totally swollen ( can't wear normal jeans etc 2 sizes bigger)

pain in joints especially neck shoulders and on a morning ankles sieze up

V occasional diarroeh but mainly hard but frequent

pain in abdo worse after bread, biscuits etc

tingly feeling in hands and fingers

moody irritable ( or maybe that's just frustration wanting it all sorted)

gas

gums bleed recently Help!!

are these sounding like celiac disease?

Hi people, well just had my scope done 2 weeks ago and so far no indication of celiac disease. Problem though, i didn't tolerate it too well and they only got 2 biopsies, needed 6 . Anyway called them yesterday and said still looking at it.

After my scope they told me i may need another if it comes back inconclusive. My Ttg was pos all symptoms pos and recently tingling in fingers ??. One thing though can anyone help me with, If my biopsy is neg and blood pos plus symptoms will my doc put me on a gluten-free diet to see if it helps? and also if he does will i get a diagnosis cause i'm tearing out my hair at the moment

  par18 said:

Was the weak positive the result of a Celiac/Coeliac specific test? If so there is at least the possibility of a sensitivity to gluten. I would wait until after the scope procedure to try anything else at this time. Based on the results of your scoping you can decide on further testing or maybe try the gluten-free diet to see if it helps. Make sure you understand how to avoid gluten completely if you decide on the diet option. Good luck.

Tom

Hi thanks for the reply. Regarding the tests all i was told was that the specitivity came back positive and i guess the other was sensitivity was the other, but that was negative. My symtoms have now started to vary though. The C has become the fluffy D if you get my drift but i admit that recently i have ingested quite a lot of gluten ie: bread,pizza,muffins etc as i was told i must carry on eating as normal until the scope.

First of all hi to everybody on here . My name is jo and i am confused.For the last year i have had problems with my tum and bowels etc. After eventually ruling out IBS my doc decided to screen me for celiac disease.

My abdomen is constantly swollen to a point where i am mistaken as expecting and i have crampy pains and general joint aching. When i sit for a meal i can eat a small amount but usually end up on the loo. I don't have diarreoh in fact just the opposite. I have found the pain at times un-manageable and been taking strong pain killers. My specitivity test ( whatever that is ) came back weak positive and the other negative. I am having a gastroscopy on Friday to confirm the diagnosis but am totally baffled by it all ?????????? any views would be extremely grateful, thanks ~ jo