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Jenny1972

Advise Needed About Bowel Biopsy

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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

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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! :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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He says is important to get a diagnosis.

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


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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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.

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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


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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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

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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.

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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

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