Biopsy

[ritamichelle]

Hi all i hope you can help me i have just had blood tests for celiac and they both come back as a positive result the 1st test was a low reading but the 2nd test was a medium result, i am now waiting a 4 week wait for a endoscopy/biopsy. Not trying to get out of the endoscopy as i have had this procedure before but is it really necessary to have this done when it has been confirmed in the blood tests, i know that they look to see if damage had been done but surely the damage is already been done. Any advice would be great

[ch88]

For me personally a medium result, in that situation,  would be enough to convince me that I had celiac disease.  Probably the standard of care is to also get a biopsy. Going gluten free is difficult so some people want to do all the tests they can so they can make the best choice. Generally more testing is thought of as providing better patient care. I think it is a personal preference thing though. 

 

[ritamichelle]

Thankyou for your advice i am getting so confused as some people are saying you dont need the biopsy and others are saying you do need it as it comes with other tests connected to thyroid, iron etc? just want to start being gluten free asap! did you go for the endoscopy? 

[ch88]

No, I didn't get a endoscopy or even  a blood test. I got digestive as well as other problems though on a number of occasions after being gluten free and accidentally eating something with gluten.  My symptoms were severe and dramatic so it was obvious to me that I had celaic disease. 

I would ask the doctor what the endoscopy test is for and if there is any reason to take it besides confirming the blood tests.  From what I have read a false positive result on a blood test is unlikely but I don't know for sure. 

[cyclinglady]

Almost EVERY single celiac expert in the world and/or groups like the U.K./U.S. Gastroenterologist Associations recommend obtaining biopsies for diagnosing celiac disease.  There are some exceptions.  If you are too ill to even risk an endoscopy, your celiac panel is extremely high on several of the celiac tests (this is still debatable), you have long wait times in getting the endoscopy (government health wait times) or you can not afford to get one are all acceptable.  

You know your situation and will have to determine what is best based on your doctor's input.  

The blood tests are not 100% accurate.  Heck, I tested positive only to a really odd one (the DGP IGA).  I had no noticeable symptoms.  I chose the endoscopy.  I never wanted to doubt my diagnosis as my hubby went Gluten Free some 16 years ago based on the poor advice of two medical doctors.  He got well, but does he really have celiac disease?  He would be the first to say that I have had way more support from family, friends and medical, yes, medical.  

I hope this helps.  Best to research like you are doing so that you feel comfortable and committed.  

[ritamichelle]

Thankyou both of you for your advice, i will have the endoscopy will just have to wait, my blood tests were not hitting the roof with reading but a low to medium result, dont want to be one of them people who have gone gluten free with no need, however i do show typical symptons of celiac but no overwhelming symptons apart from feeling nauseous and crampy at times, and extreme tiredness. There is soooo much to learn

[squirmingitch]

Furthermore, getting a positive on the endoscopy will leave no doubt either in your mind nor in the minds of the rest of your family or friends. All first degree relatives of celiacs need to be tested every 2 or 3 years in the absence of symptoms & immediately if symptoms present since celiac can present at ANY age. So your parents, siblings & your children will need to be tested.

Believe me, there is oftentimes a TON of pushback by family members simply because they don't want to have celiac so they stick their heads in the sand & say you're off your rocker, refuse to get tested because they say they don't have it and you don't have a concrete diagnosis so how can you be sure they need to be tested? Friends can be even more doubtful. People are really, really doubtful of people who don't have an ironclad diagnosis. I think it's stupid of them to be so negative & questioning what you know to be true but they are. I mean, when you say you are diabetic, no one doubts that you are, no one questions your diagnosis and everyone respects the implications of diabetes but that is not the case with celiacs. I think it must be that people can not conceive of never eating wheat flour again for life. They can easily accept a diabetics diet but not a celiacs. Yet they will grill you as if they are experts in celiac disease unless you can tell them you've had the full nine yards of testing & ARE, no doubt about it, celiac.

[ritamichelle]

Thankyou squirmingitch that is useful info, i have decided to go ahead with the endo and biopsy but i know what you mean there are still alot of people out there who still think celiac is not serious and thinks it is a choice. I have a 11 year old daughter and i think it would be foolish not to go the whole hog with this has it would help her in later life if i have the gold standard confirmation as im sure some docs still dismiss it because they do not specialise in this subject.

[squirmingitch]

You're welcome ritamichelle. Yes, if you are biopsy confirmed then it will be much easier to get your daughter tested. 

[ch88]

That is a good choice.  That way you can have an official diagnosis. 

I regret not getting a blood test as it would have made explaining things to people around me a lot simpler. It is common for family members and other people not to understand celiac disease and to think that it is a eating disorder or that is is all in the head. That would have made my life a little bit easier.  I probably would have still skipped the biopsy. 

[ritamichelle]

Ch88 yes im  glad i had the blood test but it was found by accident so bit of a shock when i found out. God knows how long i had it but i always remember as a child suffering from stomach pain alot but back in the eighties it was unheard off!  But if you or any other membets can offer advice on what happens after the biopsy it would be much appreciated.

[ch88]

There is a lot of information on site about living with Celiac disease. A good idea is to take a look at the "coping with" section and the "newbie info 101" thread. There is a lot of good information about cross contamination and proper nutrition.

[ritamichelle]

Thankyou ch88 you are so very kind, im so glad there are forums like this, so helpful.  Only signed up the other day and everyone is great.

[caitilnr222]

I am going through the diagnosis stage as well. My family has strong history for celiac disease, and while I always had discomfort and other symptoms ( some of which i didnt know about) I wasn't tested until recently because I was DEATHLY afraid of needles. The results are highly positive but I am still getting a biopsy in early August. From what I have learned about it is that the endoscopy is beneficial to looking for not only signs of celiac but also other diseases that have similar symptoms to celiac. Because of your mixed result it wouldn't hurt to get a biopsy but it really is personal preference. I understand what you are going through and didn't like the idea much either but I really think it is something that can help you in the long run.

P.S. There are lots of testing being done for new medications or other ways to "cure" celiac other than a gluten-free diet. It is my understanding that this can only be covered by insurance with a confirmed diagnosis (biopsy) but I don't need to get into that. The bottom line is that a biopsy is confirmatory especially since the doctors could see in the intestine, so to me, I feel better knowing that there's no chance of going gluten-free for nothing.

[ritamichelle]

Hello thankyou its always great to know that other people are going through things the same time. Yes my endoscopy is friday coming at 8.15am, been through the procedure before for diagnosing a hernia so that side of things are ok, just not sure if i needed the biopsy at first being the blood test confirmed  positive but i know now that i do need it not just for me but also for my 11 year old daughter who could also be celiac later and it would be better for her to know 100% mum is celiac.