After The Gastro, Before The Biopsy

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I don't really have anyone to talk to about this whole diagnostic journey, so I hope it's ok to keep posting on it and asking questions. I keep finding myself really worried that I'm at this crossroads in my health

I saw my new gastroent. on weds. He told me that Celiac was an 'allergy' and he tested for it a lot but rarely saw it.

On the other hand, he thought, given my long list of symptoms (GI, 35 lb weight loss, new vitamin deficiencies (ferritin especially), neuro. symptoms, fatigue, anxiety, & pernicious anemia) and my positive TTG (35) that it really looked like celiac.

But, he scheduled the enteroscopy (sp?) and biopsy for 5/29! and reminded me to keep eating gluten!

I understand that I can't try the gluten-free yet (grrrr), but is there anything I can/should do? Should l be worried about this gastro doing my biopsy/treating me? Are there other questions I should ask or other doctors I should talk to?

Sorry if I sound a little insane right now I know that waiting another 2-3 weeks is nothing compared to the 10 years + I've been sick (or longer for a lot of you), but I'm still a little crazy. Thanks.

[JennyC]

As you already said, you should continue to eat plenty of gluten. I would also ask/demand that your doctor take many samples during your biopsy. Celiac disease is known to be a patchy disease and the fewer samples your doctor takes, the greater the likelihood that he will miss the atrophied locations during the biopsy.

[Guest j_mommy]

I was/am in teh same boat!!! I was diagnosed via blood tests April 1st and had biopsy scheduled 5/15. Still awaiting results. My GI Dr said to wait until after biopsy to start Gluten Free diet. I have since learned that all you need is positive blood tests, but I wanted to know the damage of teh small intestine. So I did not start teh gluten free diet yet. I wil lget results on mon! Can't wait!!!!!!

Be sure to ask the Dr doing your biopsy to get 5-10 samples. Celiac can affect one area and not the next, so they need to get plenty of samples!!!!

It sucks to wait and is a personal choice. I decided I wanted to know the exact extent of the damage so I waited to do gluten free until after my biopsy! Good Luck to you!

[Ursa Major]

Grey, it is only 11 days until your biopsy! And you should go gluten-free immediately after the biopsies are taken, before you get the results.

This gastro doesn't seem to be the best, if he claims that celiac disease is an allergy. Make sure he takes at least five biopsies, because otherwise the chances of a false negative, even if it is celiac disease, are too high.

In the meantime you can start taking a good probiotic and a good, gluten-free multivitamin.

Also, you ought to see your regular doctor and get your blood tested for common deficiencies, like vitamin D, vitamin K, calcium, magnesium. Also, see if you can schedule a bone density scan, to rule out osteoporosis.

Doing all those things before the biopsy will get you all your relevant results before starting the diet. And when you do start, you'll know more about your nutritional status, which will help you heal faster when you supplement specifically for what is lacking.

I have no idea if I have celiac disease or not. But I do know I am obviously gluten intolerant. My vitamin D was quite low, and in the meantime I've got it in the perfect range, lowering my chances of many problems, including cancer.

Hang in there, in less than two weeks you can start eating gluten-free to see if it makes you feel better. And if it does, stay on the gluten-free diet no matter what the biopsies say.

[Nantzie]

When I was waiting for all my testing to be done, I just experiemented with different gluten-free foods so I would know what I liked when I went gluten-free.

Also, read a lot here and learn as much as you can so you can go gluten-free when your biopsy is over.

Nancy

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Thanks for the replies.

I'm in a new place where I don't know anyone well, so it really helps to have found this forum. Unfortunately my doctors won't do anything until after the biopsies results, but I've been reading everything I can, doing my 'gluten farewell tour' of foods, and learning about eating shopping gluten-free locally.

Given how sick I've felt this week I'm definately planning on going gluten-free next week for at least a serious trial.

J_mommy, it's good to hear about others in the same boat. I hope your results came in today and your waiting is over!

The hospital had a cancellation, so I'm up on this Wednesday... and then maybe I can get my attention (what little is left of it after the fatigue & skippy memory) back away from the biopsy to the rest of my life.

thanks again.

[Ursa Major]

Grey, what are you waiting for? The doctors won't do anything else after you get the results, whether the tests are positive or not. If it's negative they'll tell you it's all in your head and to eat whatever you want, and if it's positive they'll tell you to go gluten-free. Usually that's all you get, no diet advice at all, since most doctors are woefully ignorant when it comes to nutrition.

So, either way, you'll be on your own. Why would you wait until after you get the results to see if a gluten-free diet will help? The only reason to stay on gluten was to make sure your biopsy results would be accurate. You had the biopsy, so there is absolutely no reason to stay on gluten now and to stay sick, if gluten is indeed the problem.

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I'm definately going gluten-free after the biopsy (it's just tomorrow). I'm nervous even though I'm sure that a serious trial is the right thing.

I'm waiting on the mds for tests on the vitamin/mineral deficiencies. I know i have b12 and ferritin, but haven't been tested for a lot of the others. I tend to either vomit or have severe diarrhea w/ multimins, so I'm want to wait to find out what's missing and figure out a plan. I'm scared of vitamin supplements to be truthful. I hope I can beg for some kind of advice from the doctor...

Grey, what are you waiting for? The doctors won't do anything else after you get the results, whether the tests are positive or not. If it's negative they'll tell you it's all in your head and to eat whatever you want, and if it's positive they'll tell you to go gluten-free. Usually that's all you get, no diet advice at all, since most doctors are woefully ignorant when it comes to nutrition.

So, either way, you'll be on your own. Why would you wait until after you get the results to see if a gluten-free diet will help? The only reason to stay on gluten was to make sure your biopsy results would be accurate. You had the biopsy, so there is absolutely no reason to stay on gluten now and to stay sick, if gluten is indeed the problem.

[Cruiser Bob]

I'll be keeping up with this thread. The Gastro just called and can fit me in tomorrow, rather than a month from now. 7 years gluten-free, DF. 3yrs Egg/Nightshade free and still digestive, body pain, insomnia and occasional brain fog and pretty much zero stamina, compared to the old me. Bob

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Hi Bob,

Good luck tomorrow!

I'll be keeping up with this thread. The Gastro just called and can fit me in tomorrow, rather than a month from now. 7 years gluten-free, DF. 3yrs Egg/Nightshade free and still digestive, body pain, insomnia and occasional brain fog and pretty much zero stamina, compared to the old me. Bob

[Cruiser Bob]

I'd guess it's just a screening tomorrow. I'll let the thread know how it goes. Bob

[Guest j_mommy]

grey....

Good Luck tomorrow....i know how you feel on the farewell tour of gluten!!!! I swear i binged and paid for it!

My own fault but it really hit it home for me that gluten is not good!!!!

Good luck again and let us know how it goes!!!

By the way my biopsy was way positive!!!

[Ursa Major]

Grey, I wish you all the best for tomorrow. I was totally unable to take any vitamin or mineral supplements for six months after going gluten-free, they all gave me terrible stomach cramps. You may need to get iron and B12 injections, until your intestines are healed enough to absorb nutrients.

You can try a liquid vitamin supplement. Maybe you'd be okay with that. I wouldn't have been. If you can't tolerate supplements yet, you can't worry about it. You will need to concentrate on healing your intestines first.

[Cruiser Bob]

The Gasto PA: do some blood work first, then we'll look at an endoscopy & probably a colonoscopy since I'll be down for the count anyway. At 45 it's a little early, but it will set a baseline and help rule out other possibilities (because I'm secretely not a celiac - per the Gasto's view). My view: dad is biopsy proven, kids are healthy on gluten-free diet and my world stopped crashing with the gluten-free diet - it will be extremely difficult to convince me to add gluten into my diet regardless of what the tests say.

Anyway the scoping work, from my point of view, will show how much damage I have, or don't have in my guts. July 9 - I'll follow up in mid-July when we get results. Bob