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whattodo

Please Help Me Find Out What Wrong With Me

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Today i recieved my biopsy results and they were NEGATIVE.

They just said my duodenum was inflamed.

I have been run down for 8 months now, also had alot of weight loss and neuro symptoms and constant bloated stomach (like something is stretching, visable distention) thats why im finding it very strange. They said it could be nothing else other than celiac disease or IBS. I have been on a gluten diet for the past week and i was feeling miles better, till i accidentally had some gluten. My stomach had stopped hurting and made some real progress in the gym. Although after the gluten yesturday it is bloated again.

When i had a blood test a few weeks ago everything was fine. Believe me they tested for everything, bloodcount, antibodies, you name it. Except celiac disease.

My worry is that i have celiac disease and not know i have it, i believe it can heal itself or they took a biopsy in a good area. I do not want any more problems when i get older thats why i want to stop gluten now. Atleaset if i knew i had it i could control it.

My other worry is that it may be something else, but what could it be. the doctor said my duodenum tube was inflammed. I didnt get an answer as to why. I going to see him on tuesday to find out what he thinks. I fear he will put me on some sort of medication to get rid of me.

Another thing that confuses me is that when they did the biopsy they saw that my duodenum had flattened out. I saw the photo and it was perfectly smooth. Surely this is a sign of something. I dont think my doctor has seen this as it is still at my specialist. I have an appointment to see the specialist again in 8 weeks. I really cant wait that long.

Would my doctor have put 2 and 2 together if he saw my flattened duodenum and inflammed biopsy results.

Can my symptoms be anything else. ie. candida.

How do i know that my problem is simply not just a wheat intolerance of milk intolerance. They seem very similar to celiac disease.

Can anyone suggest a self test i can do.

I hope it doesnt offend anyone but if i am not a celiac then i am happy to eat other foods. I am worried about working out of the country and holidays, even eating in resturants. Things would be so much easier if i dont have a gluten intolerance. If you know what i mean.

I am very sad today and very confused. I dont want any more tests but i feel i may need them incase anything else is wrong and just ignoring it.

I am meant to be going for a meal tonight with friends and have planned not to eat, but should i now???

I know what you all are going to say..... just stay on the gluten free diet and see how you get on.

Am i being paranoid, am i looking too much into things?

Please can you help me come to some sort explanation.

Thanks

Jay


Hope i dont become a nuisance but there are so many questions i need to ask

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Jay-

Just had to say that you are a VERY handsome guy :wub: My age, handsome, however too far away! ha

Ok....now on to the "important" stuff ;)

You were right on when you said that we would say "just try the diet". It really isn't going to hurt anything to TRY it. If you feel better then you have your answer, and easy fix to your health problems. You don't have to buy expensive medicine!!

As far as traveling and things....there are ways to deal with that. Is celiac inconvenient?? YES!! However, it's sure alot better than being terribly sick!! I can deal with the inconvenience for the sake of my health.

It's normal to try to analyze your situation. You want to find an answer.......nothing wrong with that.

-Jessica :rolleyes:


Jessica

Gluten Free since 12-31-2002!!

Kansas

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I would try the gluten-free diet for a few months. If all your symptoms resolve, then you know it was a gluten intolerance causing them.

You could get tested for Lyme Disease. It's another systemic disease whose symptoms closely match those of celiac ... or maybe it's something you can look into if you don't feel better gluten-free. And, yes, there is Lyme in the UK.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I would try the gluten-free diet for a few months. If all your symptoms resolve, then you know it was a gluten intolerance causing them.

You could get tested for Lyme Disease. It's another systemic disease whose symptoms closely match those of celiac ... or maybe it's something you can look into if you don't feel better gluten-free. And, yes, there is Lyme in the UK.

Carla, the thing is how do i know it is celiac disease or not just a wheat intolerance. Do they both not have similar symptoms?


Hope i dont become a nuisance but there are so many questions i need to ask

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There are SO many varieties of gluten intolerance!

There is celiac disease.

There is the gluten intolerant person who gets 100% better on the gluten-free diet.

There is the gluten intolerant person whose intolerance seems to come from another condition, or at least exists along side the other condition -- Like me with the Lyme and gluten intolerance.

The thing is all kinds of gluten intolerance can wreak havoc on your body and make you ill. All kinds have the same treatment -- a gluten-free diet. So, it probably doesn't matter if it's celiac or gluten intolerance. All that matters is that you get better on the gluten-free diet. If you don't get completely better, then that's when you need to look for what other variables there may be -- other food intolerances, other illnesses, etc.

If you see no change whatsoever on the gluten-free diet, I'd say it's not a problem at all for you.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Are you sure your biopsy was negative? You said your duodenum was inflamed, and from what I gather something has to cause the inflamation and the flattening. This is what happens with coeliac The flattening of the villi and blood tests confirm the condition.

Cathy

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Are you sure your biopsy was negative? You said your duodenum was inflamed, and from what I gather something has to cause the inflamation and the flattening. This is what happens with coeliac The flattening of the villi and blood tests confirm the condition.

Cathy

Cathy, you hit the nail on the head. "something has to cause the inflamation". I am positive i am negative, just found out today. I believe I have celiac disease but the diet i had leading to the biopsy was gluten free and a week before the biopsy i ate gluten. I only strictly went free for 2 weeks. I was eating a healthy diet on finding i had trouble with diverticular disease of the bowel about 7 months ago. Maybe this helped me get a negative. Maybe a week on gluten before the biopsy wasnt enought.

I dont know if i will ever find out now

Jay


Hope i dont become a nuisance but there are so many questions i need to ask

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Cathy, you hit the nail on the head. "something has to cause the inflamation". I am positive i am negative, just found out today. I believe I have celiac disease but the diet i had leading to the biopsy was gluten free and a week before the biopsy i ate gluten. I only strictly went free for 2 weeks. I was eating a healthy diet on finding i had trouble with diverticular disease of the bowel about 7 months ago. Maybe this helped me get a negative. Maybe a week on gluten before the biopsy wasnt enought.

I dont know if i will ever find out now

Jay

Hi, Jay:

Everybody is different. For me, there were many factors involved for me wanting to know if it was really celiac or something else. For instance, I have a sister with Lupus. I wondered if undiagnosed celiac disease caused her Lupus or not. I wondered if the entire family should be tested. (And that's just one factor)

Anyway, you said you didn't have the blood test. Is there any way you could find a way to get one done? And you have to be consuming a lot of gluten for a while for it to come out positive. That's the problem. Or, could you find out about getting the genetic panel done? Although it's not a diagnosis by itself, at least if you're positive you have something to go by. You know that you're at least predisposed to celiac disease.

A very good reliable doctor told me that it is rare to have a negative biopsy and have celiac disease. But it's not impossible. There could be a number of reasons why it came out negative. They could have actually screwed up! Or maybe you don't show enough damage yet, or they missed where the damage is. There's a lot of intestine and they usually only take so many samples.

I tried the diet and it worked wonders! But I still wanted to know for sure if it was celiac disease or not. But it's up to you what direction to take.

At least you've put your health in your own hands and you're looking and pushing for an answer. I don't understand why it's so sticken hard in the US to get the tests we need for the disease! They should just give us every test under the sun for the disease and rule it out completely or find out we have it. (do I sound frustrated)

Keep pushing to find out if that's what you want. One good option is to ask people here who they see for a specialist and perhaps you can find a better doctor who will actually run the tests you need. I don't know. Good luck.

Dee

Oh, you didn't offend me at all! Just so you'll know. My son is going through the same stuff right now. I want him tested and of course he's hoping he doesn't have it because although he's been eating much healthier lately, he's concerned about the gluten-free diet. He'd be much happier not having to do it!

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Hi Jay,

Its a hard decision for you I am sure.

Just a note, I found this information about flattening in the duodenum being related to celiac:

http://www.celiacdiseasecenter.columbia.ed...6-Endoscopy.htm


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Jay, the villi will become inflamed before they will start to flatten. Maybe you have just caught it before that would have happened. That is a good thing, as some damage may be irreversible once your villi are completely flattened, plus you could become very malnourished then, due to not being able to absorb nutrients.

You say 'my doctor might just put me on some medication for IBS'. Your doctor can't 'put you' on anything. It takes him to say you should take it, and you to do it. If you refuse, there is nothing he can do!

You may just have to be your own doctor, and put yourself on the gluten-free diet! You said that when you went gluten-free you felt much better. Meaning, you are obviously gluten intolerant.

Somebody said that it is rare to get a negative biopsy if you have celiac disease. Not so. It isn't rare at all. It is actually quite common.

So, now that you had your biopsy, just go back to being gluten-free, and to feeling better. You don't need any doctor to allow you or not allow you to do it. It's your body, you can put anything you want into it.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Somebody said that it is rare to get a negative biopsy if you have celiac disease. Not so. It isn't rare at all. It is actually quite common.

Dr. Peter Green told me this. But he also said all the other stuff I wrote. He gave me reasons why it's not impossible, such as the lab screwing up, etc.

He diagnosed me even though my biopsy was negative. So, it's not impossible. But he said it's rare.

Dee

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Jay,

I know EXACTLY how you feel. Before I found out about my "possible gluten intolerance" I was having blood tests run every couple of days, had a biopsy of my small intestine, and a colonoscopy. All of which came back negative...aside from a "high antibody count" in my blood test.

And before all of the lovely tests, I was diagnosed with IBS and put on a high-fiber diet, and TONS of medication.

The only advice I can give (like most of the other posts thus far) is to stick with the gluten-free diet, since you said that it was working before.

Trust me, I definately know how frusterating it can be to have doctors running tests and for the results to not be what you are expecting...but as someone said prior to me: it's your body. Only you know what makes you feel good and healthy.

Hopefully I helped you a bit (and didn't ramble too much...) and I hope everything gets better for you :)

-Haley

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Jay, the villi will become inflamed before they will start to flatten. Maybe you have just caught it before that would have happened. That is a good thing, as some damage may be irreversible once your villi are completely flattened, plus you could become very malnourished then, due to not being able to absorb nutrients.

You say 'my doctor might just put me on some medication for IBS'. Your doctor can't 'put you' on anything. It takes him to say you should take it, and you to do it. If you refuse, there is nothing he can do!

You may just have to be your own doctor, and put yourself on the gluten-free diet! You said that when you went gluten-free you felt much better. Meaning, you are obviously gluten intolerant.

Somebody said that it is rare to get a negative biopsy if you have celiac disease. Not so. It isn't rare at all. It is actually quite common.

So, now that you had your biopsy, just go back to being gluten-free, and to feeling better. You don't need any doctor to allow you or not allow you to do it. It's your body, you can put anything you want into it.

Thanks for your reply Ursa Major and everyone else. U understand what your are saying by catching the flattening of the villi in time. By the photo that they showed me and the observation they made of the duodenum. It has no folds at all. I would have thought the folds flattening would have happened after the villi flattened. i might be wrong


Hope i dont become a nuisance but there are so many questions i need to ask

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Hi Jay,

I have been struggling with same issues. I was not diagnosed with celiac, but i am certain I have it. I went gluten-free a month before the test and probably skewed the results. I do know this, if I stay away from gluten, I feel better. I am extremely sensitive to it. I would really prefer a straight out diagnosis, but my body is telling me that it can't take the gluten. I need to listen to it. They also told me I just have IBS. I am going to continue on the gluten free path so I can feel better. Best wishes to you, I am right there with you. Confused and sad. It is so hard to go out with friends because you have to be so careful. The boards here have helped me alot and it feels very supportive!

Terri


Diary free 11/06-6/08

Now using a small amount of low-lactose dairy such as aged cheeses and yogurt. Yum!

Gluten-free since 4/07

"When you row another person across the river, you get there yourself."

- Fortune Cookie

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Jay,

There are a lot of us in the same situation. By the way I am in the UK too (post on a uk based board as well as this one).

By "the same siutation" I mean that gluten causes us a problem but we have not been diagnosed wioth celiac disease because the biopsy was clear.

The UK medical profession do not seem to accept that there is a broad spectrum of gluten intolerance and that at one end you have minor gastro symptoms and that at the other end there is celiac disease.

In between there are all sorts of neuro symptoms, levels of sensitivity and Coeliacs who are asymptomatic even.

What the medical profession don't seem to be able to agree on either is that if we have symptoms of Gluten Intolerance, but do not YET have coeliac Disease - will we get it? If we carry on eating gluten?

Why - just because we are so in touch with our bodies, and realise that gluten is causing a problem, and we catch this thing early before we get celiac disease - are we dismissed as there being nothing wrong with us - or even worse, IBS?

There is only you that knows how you feel when eating gluten, and how you feel when gluten-free. And whether it is worth going gluten-free. By the way - sorry I haven't read all your previous posts, and I don't want to sound pedantic, but do you know it is gluten, rather than wheat which is giving you a problem. i.e. malt rye barley?

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