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Does This Sound Familiar ?

Mary Contrary

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Mary Contrary Rookie
Mary Contrary
Posted

Opps !! Mods I see I put this in the wrong spot..should be in Pre-diagnosis...

I have been lurking around here for a month or two..

I have had constant D for 3 months...nothing helps, Impodium, Pepto, or some high powered med..Diphenoxylate & Atrophine.

Have been going to my regular Doc about once a week is seems complaining..had all the stool test for various things..and a few blood tests and she even had a Celiacs panel done, or course it was negative..but here is the deal, I cut out all wheat and gluten about 2 months ago, and now finally this last week I have seen a bit of improvement in the D, oh by the way I have added Psyllium Husks to my diet and it has firmed things up a bit ...

Oh her best advice, my Doc, was to go home and eat lots of applesauce, and have some toast.. :blink::angry::rolleyes:

I found a great Gastroenterologist, on my own, but at the same clinic, anyway he listened to everything I had to say and my feelings that it could be Celiacs, I am having a colonoscopy and an upper gastrointestinal exam to get biopsy of my small intestines, this coming Tuesday....I am actually looking forward to all of this, perhaps I will get some much needed answers, although I am so sure it is Celiacs. Up until the last 3 months, I have always noticed that if I ate too much bread or spagetti, pizza, what have you, it would give me C quite a bit of the time.

I am also hypo-thyroid, which has caused me intestional problems off and on a bit too...if my meds are too low, I get major C....but just had my TSH checked any everything is good there.

I love this forum, you guys have been a life saver for me these last few months.

I am wondering since I have been off of wheat/gluten for two months do you thing it will effect the biopsies..I am thinking if it is this, my intestines must still be pretty ragged..

thanks for listening...

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happygirl Collaborator
happygirl
Posted

Welcome to the board!

Chances are, your biopsy will not accurate. You have to be eating gluten for an extended period of time (months) for it to be accurate.

Think of it like blood sugar testing for diabetes. Before someone starts managing their diet, and they test their blood, their blood levels are all out of wack when they are tested. They start managing their diet, and then when they re-test, their blood sugar levels "should" be normal. Having normal blood sugar levels then doesn't mean that you don't have diabetes...it just means that it is managed and well controlled.

You can think of the diabetes example in relation to Celiac. The reaction only occurs when you are ingesting gluten. If there is 100% no gluten, then the reactions stop, and the body begins to repair itself. Plus, Celiac damage can be patchy anyways, so even when eating gluten foods for an extended period of time, doctors can easily miss Celiac damage. Add the fact that you are healing.....and it could be pretty hard to find damage that is left.

(I know this from experience. I had positive bloodwork and went gluten free on the advice of my ignorant doctor. 5 weeks later I had the biopsy and it was negative. But, I react horribly to gluten. We decided it was not worth it to put me on months of gluten to test what we already know)

You will need to have this discussion with your doctor, because your biopsy results could very likely turn up a false negative.

On the other hand, you could be non-celiac gluten intolerant, which means that the blood work and biopsy, even when eating gluten will not be positive (these tests are for Celiac gluten intolerance, and not non-Celiac gluten intolerance). The treatment is still the same: Do not eat gluten :)

Mary Contrary Rookie
Mary Contrary
Posted
  • Author
Welcome to the board!

Chances are, your biopsy will not accurate. You have to be eating gluten for an extended period of time (months) for it to be accurate.

Think of it like blood sugar testing for diabetes. Before someone starts managing their diet, and they test their blood, their blood levels are all out of wack when they are tested. They start managing their diet, and then when they re-test, their blood sugar levels "should" be normal. Having normal blood sugar levels then doesn't mean that you don't have diabetes...it just means that it is managed and well controlled.

You can think of the diabetes example in relation to Celiac. The reaction only occurs when you are ingesting gluten. If there is 100% no gluten, then the reactions stop, and the body begins to repair itself. Plus, Celiac damage can be patchy anyways, so even when eating gluten foods for an extended period of time, doctors can easily miss Celiac damage. Add the fact that you are healing.....and it could be pretty hard to find damage that is left.

(I know this from experience. I had positive bloodwork and went gluten free on the advice of my ignorant doctor. 5 weeks later I had the biopsy and it was negative. But, I react horribly to gluten. We decided it was not worth it to put me on months of gluten to test what we already know)

You will need to have this discussion with your doctor, because your biopsy results could very likely turn up a false negative.

On the other hand, you could be non-celiac gluten intolerant, which means that the blood work and biopsy, even when eating gluten will not be positive (these tests are for Celiac gluten intolerance, and not non-Celiac gluten intolerance). The treatment is still the same: Do not eat gluten :)

thank you for your reply and advice...and I have already decided no matter what happens with the tests, I am off of gluten for life...I think the proof is in the pudding, I am already feeling much better and I am going to stick with this..

I also had horrible bloating and major gas....and that has gone away as well... :D

happygirl Collaborator
happygirl
Posted

That sounds like a great plan to me!!!!! It amazes me that there are people who know that something bothers them, but don't stop it, because a test doesn't confirm it. Our goal on this board is to provide information, education, and support for the gluten free lifestyle...regardless of its form: celiac, gluten intolerance, gluten allergy, or personal choice.

My mom and I talk about the joke (Patient: Doctor it hurts when I do this. Doctor: Well don't do it)....why doesn't that philosophy apply more to gluten?!!! I get sick when I eat gluten...so I don't eat it, but I don't care what anyone wants to label it as :)

Positive dietary response is an important diagnostic tool!! I am happy that you have found the proof in the pudding...the gluten free pudding, of course :P

Let us know what else we can do to help!!!

Laura

Mary Contrary Rookie
Mary Contrary
Posted
  • Author
That sounds like a great plan to me!!!!! It amazes me that there are people who know that something bothers them, but don't stop it, because a test doesn't confirm it. Our goal on this board is to provide information, education, and support for the gluten free lifestyle...regardless of its form: celiac, gluten intolerance, gluten allergy, or personal choice.

My mom and I talk about the joke (Patient: Doctor it hurts when I do this. Doctor: Well don't do it)....why doesn't that philosophy apply more to gluten?!!! I get sick when I eat gluten...so I don't eat it, but I don't care what anyone wants to label it as :)

Positive dietary response is an important diagnostic tool!! I am happy that you have found the proof in the pudding...the gluten free pudding, of course :P

Let us know what else we can do to help!!!

Laura

lol..I say that too...it's like 'hey it hurts when I hit myself in the head with a hammer..wonder what I should do about it'... :P

Yeah you people are awesome on here...after about 2 months I am getting closer to a normal, can I say it...turd... :D:)<_< ..it's nice to have some other folks who can relate to all of this...

  • 3 weeks later...
Mary Contrary Rookie
Mary Contrary
Posted
  • Author

Sorry for the double post, but wanted to get back to you wonderful folks on here and maybe this will help some other poor fool out there as well..

I added it to my sig, but here is what I have confirmed Microscopic/lymphocytic colitis ..but I am still staying gluten free, because initially it just made me feel better, it didn't do anything for the constant D, but now I have an answer for that..and I am doing much much better...and I know you people can relate to this..I am even back to real turds... :P

I have been gluten free for almost 3 months now as well..and am sticking to it...everything my body is telling me is that I am on the right track, despite the negative tests.

and of course I have "friends" who say "well if the tests says you can have wheat, then what's the problem" and then they look at me like I am nuts...but my entire family, and especially my husband, are extremely supportive and know I am not crazy.

It has been fantastic to come here and read what so many of you have to say, and how true it rings for me as well...

I also have to say in my Docs defense that Microscopic/lymphocytic colitis can go undiagnosed for years, it is hard to find..so I do have lots of faith in the man. They even felt at the clinic if wheat bothers me, well don't eat it. Duh-o...

Merry Christmas

tarnalberry Community Regular
tarnalberry
Posted

Yep, being gluten-free for that long will affect your results, and good for you for listening to your body! :)

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Nancym Enthusiast
Nancym
Posted
My mom and I talk about the joke (Patient: Doctor it hurts when I do this. Doctor: Well don't do it)....why doesn't that philosophy apply more to gluten?!!! I get sick when I eat gluten...so I don't eat it, but I don't care what anyone wants to label it as :)

I think about that too, except in our case the doctor says to keep doing it and thinks we're nuts if we stop! Sheesh, the world is upside down.

GlutenWrangler Contributor
GlutenWrangler
Posted

The diet will definitely affect the test, and it's already too late to re-introduce gluten for the biopsy. Just keep with the diet and don't worry about a negative biopsy. You could still have an accurate result if you get tested through Enterolab. That's if you want to know for sure, and if you want to check your genes. Good luck.

-Brian

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