Advise Needed About Bowel Biopsy

[Jenny1972]

Hi

I have been gluten free for 4 months. My Doctor said I had celiacs but the consultant at the hospital says that there is no eveidence to prove this from my bllod work so I need a biopsy. The only thing is that they expect me to eat gluten for two weeks before biopsy. I did an experiment about a month ago and ate a bread roll which made my bowels exploid (yuk) and then I spent all weekend with pains in my arms and legs. So I proved to myself that I can't eat wheat. I told the consultant this and he is still insisting that I eat gluten for two weeks prior to biopsy. He says is inportant to get a diagnosis. The trouble is I am on my own with my 12 year old son who has epilepsy. I have no family support so don't see how I can make myself ill for two weeks just to get a diagnosis. Plus I work part time.

Any advise?

Jenny

[nikki-uk]

Quite frankly, is it worth it??

You know how gluten affects you so I really can't see what's to be gained??

Besides - 2 weeks is not nearly long enough for you to gain a positive biopsy (more like 8 week+)

Good Luck!

[ravenwoodglass]

Okay, you have a diagnosis, you have done well on the gluten free diet and have been gluten-free for 4 months. You know gluten makes you sick. You don't need to make yourself sick for 2 weeks, which as stated is not long enough anyway, just to prove to this guy that the gluten free diet is what you need. If you do go through the pain and expense and the biopsies are negative are you going to go back to eating gluten? If the answer is no then IMHO you will be putting yourself through a lot of pain just to 'prove' something to this doctor. When I was diagnosed I did attempt a gluten challenge for a biopsy, I was back on gluten for only a couple days when I started bleeding heavily from my GI tract. The biopsy was cancelled and I got my 'official' diagnosis at that point. Too bad I had to almost die to get it. Your body is telling what you need to know. You don't have to prove it to anyone. In my opinion.

[Jestgar]

He says is important to get a diagnosis.

Important for whom? If it isn't important for you personally, don't do it.

[happygirl]

Although I do think its important for some people (esp those who haven't stopped eating gluten) to have the biopsy, if I were you, I would not do it.

I've stood my ground....told 4 GIs I wouldn't go back to eating gluten. They can't make you eat gluten and have the biopsy. If it is too much for you, then don't back down.

[nora-n]

About your son---gluten is known to to trigger epilepsy in gluten-sensitive people. Have you looked into that?

Dr. Hadjivassiliou has also written articles about gluten-sensitivity and neurological problems and says only a few have bowel afflictions, that gluten-sensitivity is really three things, villi destruction, Dermatitis herpetiformis, and neurological affliction.

nora

[Jenny1972]

Hello

I totally agree with all of you. I know I can't eat gluten so will remain gluten free no matter what the biopsy result says. I am trying to get my consultant to confirm that the proceedure may still be useful if it rules out stomach ulcers and other cysts etc. As for a celiac diagnosis like I said I am going to carry on gluten free regardless. I do feel much better by not eating gluten so why change.

The only benefit to getting a proper diagnosis is that if I have celiacs then it is likely that my son has too and as one of you commented about gluten effecting his epilepsy it may be nessesary to get him gluten free too.

Jenny

[Jenny1972]

Okay, you have a diagnosis, you have done well on the gluten free diet and have been gluten-free for 4 months. You know gluten makes you sick. You don't need to make yourself sick for 2 weeks, which as stated is not long enough anyway, just to prove to this guy that the gluten free diet is what you need. If you do go through the pain and expense and the biopsies are negative are you going to go back to eating gluten? If the answer is no then IMHO you will be putting yourself through a lot of pain just to 'prove' something to this doctor. When I was diagnosed I did attempt a gluten challenge for a biopsy, I was back on gluten for only a couple days when I started bleeding heavily from my GI tract. The biopsy was cancelled and I got my 'official' diagnosis at that point. Too bad I had to almost die to get it. Your body is telling what you need to know. You don't have to prove it to anyone. In my opinion.

Oh god how aweful for you. This is exactly what I am trying to avoid. Why should I put myself at risk for a diagnosis.

Thanks you for your comments.

[aikiducky]

Is your son gluten free? If he isn't, what's stopping you from having him tested? You don't necessarily need to have celiac for your son to have it.

Pauliina