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Help! Have To Eat Gluten Again!

F.deSales

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F.deSales Rookie
F.deSales
Posted

I have been gluten free for 7 weeks. Had my first normal bm in months today. Went to the doc today said I need to have another EGD/colon done . This time I have to eat gluten for two weeks staring tomorrow to make sure the test is accurate. :( I am trying to get the courage to do so. I can't do the regular blood test because I have complete Iga deficiency.

When I think of the pain and hours I will spend in the "powder room" I get really scared. I am getting very depressed too. I am just starting to feel a bit better and now it is back to a living nightmare. My hubby is going to make sure I do as I am told because last time didn't and the procedure was canceled.

So, I guess I am just asking for pep talks and prayers. I know that you all have probably have gone though this also and I would appreciate some "I lived to tell about it"

Should I eat low gluten stuff or a little or what? :huh:

Thanks. This group is a blessing.

A~

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sfm Apprentice
sfm
Posted
I have been gluten free for 7 weeks. Had my first normal bm in months today. Went to the doc today said I need to have another EGD/colon done . This time I have to eat gluten for two weeks staring tomorrow to make sure the test is accurate. :( I am trying to get the courage to do so. I can't do the regular blood test because I have complete Iga deficiency.

When I think of the pain and hours I will spend in the "powder room" I get really scared. I am getting very depressed too. I am just starting to feel a bit better and now it is back to a living nightmare. My hubby is going to make sure I do as I am told because last time didn't and the procedure was canceled.

So, I guess I am just asking for pep talks and prayers. I know that you all have probably have gone though this also and I would appreciate some "I lived to tell about it"

Should I eat low gluten stuff or a little or what? :huh:

Thanks. This group is a blessing.

A~

It really depends on how much you feel you need a diagnosis. I've been gluten free for going on 10 months now, despite negative blood testing. Because I could tell from how much better I felt what the answer was, tests or not.

Your G.I. does know what he's talking about, though. Lots of doctors don't bother telling their patients (or don't know) that they have to be eating gluten for the tests to be accurate. Mine didn't before my blood tests, so they might have been positive if I had them earlier.

I'm seeing a new G.I. who wants to do a biopsy anyway - he thinks my doctor should have ordered one based on my symptoms. But I know I have a choice - eat gluten and be sick for a few weeks, or don't, and accept the fact that my diagnosis will probably be incorrect.

One other thing - you haven't been gluten free that long - which means the damage may still be present, whether you go back to eating gluten or not.

I know I'm not answering any questions for you, but those are my thoughts...

Good luck.

Sheryll

Ursa Major Collaborator
Ursa Major
Posted

Unfortunately, your G.I. doesn't know what he is talking about after all. After being gluten-free for seven weeks, two weeks won't be nearly enough to get an accurate test. It is quite likely that you would get a false negative, and be told that you can't have celiac disease.

It would at this point take at least three to six months of eating a lot of gluten (at least four slices of bread a day) to even have a remote chance of an accurate biopsy. And even then there is no guarantee.

Really, you have no choice but cancel the biopsy that is to take place in two weeks, as it will be utterly useless.

You now have two choices: The first one is to once more destroy your villi, making yourself very ill in the process, possibly causing irreparable damage to your intestines and possibly other parts of your body to have a biopsy in a few months, which may still not be accurate. The second one is, to listen to your body and realize that you feel so much better without gluten, and obviously have a problem with it, that it would be foolish to start eating it again.

Also, you could be tested with Open Original Shared Link, which will give you an accurate test result up to a year after starting the gluten-free diet. It is expensive, but worth it if you get the answers you need.

No doctor in the world can order you to make yourself sick again just to get a diagnosis you don't need. You already have your answer.

amberleigh Contributor
amberleigh
Posted

Before I found out I had celiac disease, my doc prescribed Bentyl to help with the diarrhea (we thought it was just my IBS flaring up again after the birth of my son). That stuff acts like industrial strength Immodium and it really helped a lot. I don't know if your doc can prescribe it for you to help while you're back on gluten??? Just a thought. Hang in there!

Oh and I got some side effects on the Bentyl for about an hour...dry mouth and a little dizzy/shaky...but I'll take that over diarrhea anyday!!

JNBunnie1 Community Regular
JNBunnie1
Posted

I couldn't agree more with Ursa. There is no medical reason to get a Celiac diagnosis, YOU already know you feel better. Why bother? What exact purpose would this diagnosis serve, really?

kbtoyssni Contributor
kbtoyssni
Posted

I don't see any reason to waste another 2+ weeks of your life just for a doctor. It sounds like you're perfectly convinced it's gluten and don't need another medical diagnosis to make you stop eating it. You do not need a doctor's permission to stay gluten-free.

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