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Help- Biopsy Schedule For 1/29...what Will It Show If I Don't Eat Wheat

Robynn

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Robynn Newbie
Robynn
Posted

Hi all,

I have been violently ill since April. First I had uncontroable diarrhea and lost 25 pounds int he first month, cramping, bloating, back pain, thought I had oviarian cancer, my doctor was treating the symptoms but did not know what to do with me. I couldn't eat anymore but was always hungry. I was a mess and very depressed to think I would have to live like this for the rest of my life (I turned 40 in March and heard it was downhill from there, but never expected this :0) I really thought I was dying, and wasn't even functioning during daily life!

About a month ago, a friend of mine had a friend that had the same symptoms but a bit more mild, and she told me try to take out my wheat and see if that helps. Not knowing what had wheat in it, I cut out all carbs, and only ate fruits, vegies and proteins. Within 24 hours I had energy and I wasn't sick all the time. I feel like a new person! And hoping that all my other symptoms reduce over time as things heal in time (ie: back pain, achiness, ect.) I cannot believe I have all these symptoms and doctors are just not aware that this even exsists (Boy I am going to be educating quite a few of them).

Now here is my problem: I finally went to a gastro doctor and he did blood work on Thursday (not back yet) and scheduled a biopsy and scope for 1/29. He looked at my history, family history and he feels I totally found it! Will he find anything if I am not eating wheat for this month? I cannot imagine starting to eat everything again for the diagnoses, but will if it will help in the long run I will. How about just eating it the week before? If I do not eat wheat will it heal in that time? It has already been a month off wheat. What will a diagnoses do for me in the long run? Is it worth getting one? Sorry for my ignorance on everything, I just found out and we are leaving for Florida on Tuesday, and I am getting worried I am doing the wrong things.

I am going on a 10 day cruise on Thursday and I really am going to be good so I feel good. Didn't even want to go before or think that I could even survive (big family reunion trip) but now I really feel like I am a new person and it will only get better and cannot wait to go! Any suggestions for the cruise (I already let them know that I am gluten free)?

Help me please and I so appreciate your time in responding! Thank you! Robynn

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Ursa Major Collaborator
Ursa Major
Posted

It looks like you've found the culprit - gluten (and it is not just in wheat, but rye and barley as well). Unfortunately, it is quite likely that all of your tests will come back negative, because in order for them to be positive, they should have been done before you stopped eating gluten containing foods.

And no, eating wheat for a week before the biopsy won't be enough. You may have to eat wheat again (at least the equivalent of four slices of bread a day) for three to six months minimum for accurate test results. Personally, I wouldn't do that (in fact, I didn't). You can still get tested by Open Original Shared Link, their tests will be accurate up to a year after eliminating gluten.

Guest j_mommy
Guest j_mommy
Posted

I agree...more than likely your blood tests and a biopsy will come back negative due to you not eating gluten. As ursa major said you need to be eating an egiv of 4 slice of bread a day for at min 2 months(accordign to Dr. Green).

kbtoyssni Contributor
kbtoyssni
Posted

Yep, you'll probably test negative. Don't feel you have to go back on gluten for traditional medical testing. Dietary response is a perfectly reasonable method of diagnosis. Benefits of a traditional medical diagnosis would be for some people it's easier to stay on the diet if you have "proof". Or to convince family members if they're skeptical. It could be helpful for kids, too, with school issues. Negatives include difficulty getting private insurance if needed later in life. I diagnosed myself on dietary response because I wasn't willing to keeping making myself sick so I could do traditional testing. I wanted to get on with my life.

mftnchn Explorer
mftnchn
Posted

I agree, I think that a month off gluten will already make your testing negative. I wonder if there would still be unhealed damage in your gut....but the biopsy would have to find just the right spot. Not that likely.

MyMississippi Enthusiast
MyMississippi
Posted

I would ask these questions of my gastroenterologist. He's the specialist. :) He should have some good answers.

Also, considering how sick you have been, he may be ruling out other disease processes(besides Celiac) by doing an endoscopy.

Glad you are doing better. :)

Ursa Major Collaborator
Ursa Major
Posted
I would ask these questions of my gastroenterologist. He's the specialist. :) He should have some good answers.

The problem with this way of thinking is, that too many gastroenterologists know close to nothing about celiac disease (sadly, because they SHOULD be the specialists on celiac disease). Still, you should ask him all those questions (if you bother with the biopsy).

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