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having a nightmare!

Posted , 4 users are following.

bethany36199
bethany36199

hi, 

I have a couple of questions to ask on here...

forst of all here is my story!

I have been having a lot of symptoms which i belive sounds a lot like celiac after reading hundreds of forums! ive had these symptoms for a while and they have worsened within the last 6 months, these include:

. severe tiredness/ fatigue

.severe bloating even first thing in the morning

.excessice gas in the evening/ night which smells awful!

.feeling the need to burp at night

. nausea after eating or at night

. bowell movements sometimes up to 5 times a day

.loose stools

.taking a long time wiping before clean 

.undigested food and blood occasionally in stools 

.dark circles under my eyes 

.constantly hungry

. mild anxiety

.insomnia

.rash around nose

i went to the doctors with my symptoms and she ordered 15 different blood tests including the celiac test. went to get these done. my results returned with everything normal except i had low vit D and high ESR which is a sign of inflamation, celiac tests hadnt returned and i was informed these often take longer so to wait for a couple more weeks. in the meantime i wanted to test going gluten free for a couple of weeks. i know that if you then have to have an edoscopy then you have to be eating gluten tot get an accurate result however i knew it woul dbe a long time before i had that done so going gluten free for 3 weeks wouldnt afect it.  Going gluten free almost got rid of my symptoms completely apart from my bloated belly. however i read that if you have a lot of damage then this can take a while to go back to normal. 

1 month kater my celiac test still wasnt back. the doctors were useless at helping me and half of them hadnt even heard of celiac! i rang the hospital where i had the bloods done. they told me that they hadnt requested the celiac tests and my bloods ha been disposed of! obviously at this poiunt i was very annoyed as it meant i would have to get more tests done. But in the meantime because i had not been eating gluten i would now have to wait even longer befor ei could get them done in order to make sure my results were accurate.

so my questions are:

1) does this sound like celiac?

2) i avoided gluten for about 3 weeks in total, how long should i be eating gluten for again befre getting the test done again? 

3) how much gluten should i be eating?

4) what is the importance of a diagnosis?

i would appreciate anyones help! I am so uncomfortable wth my symptoms and just want all of this to be over!

thanks smile

1 like, 3 replies

3 Replies

  • laurie99463
    laurie99463 bethany36199

    Posted

    Hi Bethanby,

    Yes, it certainly could be Celiac Disease.  However, everything is a symptom of Celiac Disease.  An autoimmune disease, Celiac can attack the body in numerous ways seemingly unrelated to the digestive system.  Remember, it is through the digestive system that nutrients are distributed throughout the body. Tat source being interrupted leaves vital organs in compromised conditions. How much gluten can you have? the answer ZERO!  If, however, you are being tested, NO NOT TEST IMMEDIATELY AFTER HAVING BEEN GLUTEN FREE.  You will most likely be ill but it is important that you eat a normal diet at least one week before testing.

  • linda72460
    linda72460 bethany36199

    Posted

    It's possibly coeliac but it could be IBS. coeliacs don't normally wake up bloated but IBS sufferers do. coeliac doesn't often cause regular loose stools but ibs does.staying away from gluten would improve both conditions.you need to be eating gluten at least twice a day for a month to get a reading from a blood test.the most reliable form of identifying coeliac is an endoscopy.the main importance of a diagnosis so that regular blood tests can be done to check for anemia,diabetes and bowel damage.i found that even though I went gluten free I still bloated up as the day went on.i cut out dairy and soya completely and I feel good.hope you get it sorted
  • FA54321
    FA54321 bethany36199

    Posted

    Hi Bethany, I'm sorry to hear of your experience with the doctor and the mix up with your tests. There still is a possibility you have coeliac disease, especially if your symptoms have improved - and yes, it can take a lot longer to heal totally, if you have gone untreated for a long time. I had withdrawal symptoms as well, for a while afterwards.

    You need to be eating gluten on a daily basis for at least 6 weeks before an

    If I was in your position, I would ask your doctor for an endoscopy and for biopsies to be taken, as that will give you are more accurate diagnosis than a blood test, (doctors usually ask for an endoscopy to confirm it, in any case, following a blood test).  The thing is, you want to find out for certain what is causing your symptoms, and an endoscopy should do this. They will be able to see any damage etc. 

    You our need to eat gluten for at least 6 weeks before and endoscopy (or even a blood test) to get an accurate result.  It is very important to get a proper diagnosis, as if coeliac disease goes untreated (by excluding gluten/wheat) it can lead to other illnesses (e.g. Other auto-immune diseases, osteoporosis or even cancer), so it's not something to be taken lightly.

    I wish you the best of luck with everything.  Let us know how you get on.  

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