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Undiagnosed And Still Sick... Could This Be Celiac?

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I've been sick for a while, and hoping that maybe someone here can give me some insight into what might be going on. At this point, any ideas are greatly appreciated.

Thanks in advance for reading through this massive post! <3 I've tried to format it so that it doesn't make anyone's eyes bleed.

So, here's the deal (I'll attempt to do this in chronological order):

Wtf Insane Stomach Pain?!

Since about January, I've had mysterious stomach pain. A sharp, stabbing pain usually near to my solar plexus, that lances all the way down to almost my belly button. When I have one of these severe attacks, I can barely sit up straight. (Due to a lack of coverage, I wasn't sure if I should go to the hospital in the beginning) This hasn't happened often, maybe 8 or 9 times, but every time it scares the crap outta me. Usually if I lie down, it'll fade away after a while. I'm not sure if there really is a connection between being horizontal and a lack of pain, but whenever I get an attack I usually just curl up in bed.

I remember a few occurrences of this kind of pain 2-3 years ago. I never knew what caused it. My mom is a nurse, and she said it could just be built up gas (since I didn't always eat a lot, or on time) and since it didn't bother me often, I never thought too much of it. I've tried taking Gas-X and Gaviscon during attacks. Neither made a lick of difference.

I spent 2009-2010 in Japan, and my diet was uber healthy. Always had rice, and not much in the way of wheat/gluten. I don't remember having any stomach pain that year.

Fast forward to January 2011. (My diet has included a lot of wheat things, like bread and pasta) The stomach pain comes back. Often late at night, right after I eat (thought it may have been because of greasy foods like Pizza/Hamburgers) although I have had it a few times when I haven't eaten for several hours. I haven't had a severe attack in.. a month or two, I think? I'm not well off, so I've been eating a lot of rice lately, rather than breads/pasta, though in the last month that has changed.

Randomly Sick - Nausea and Mild Pain?

About a month and a half ago, I woke up one morning and felt sick. Just.. eugh. I had been drinking a little the night before, but this wasn't like a hangover. Nausea, and mild stomach pain. I called in sick. The next day I was no better. Went into work anyway, and had to ask to come home early because of mild nausea and sharp stomach pangs. I work in a warehouse, and although I'm a featherweight I do a lot of lifting, up to 50lbs.

My mom just had her gallbladder out, so we were suspicious about gallbladder stones. I went for an ultrasound, but it came back completely clean. Also did a general blood workup, which also came back clean, aside from my hemoglobin was sliiightly low (can't remember the exact count).

Symptoms since I 'got sick' a month-ish ago are:

-Stomach pain. Usually pangs near my solar plexus, sometimes moving a bit to the right or the left. Occasionally in other places, though always upper abdomen. I believe it worsens with exercise (since it happens often at work.. haven't thoroughly tested this, mostly because I don't want to)

-Nausea. Not severe, but constant. Worsens after I eat, though I have yet to throw up. I believe it worsens with exercise (since it happens often at work.. haven't thoroughly tested this, again, mostly because I don't want to)

-Tender abdomen.

-Bloating

-General fatigue

-Weight loss. I used to hover at about 110 lbs on my parents' scale, which is a bit underweight for my 5' 6" frame. Now I'm 100 lbs. Unsure of when this began. In the last few months, I'd guess.

-Decrease in appetite. (More recently, but that might just be because I feel sick whenever I eat..)

-Occasional diarrhea. This may or may not be from my wheat/dairy allergy (explained below)

Crappy Doctor and Test Results

Since then, I've missed a ton of work, which is causing major financial problems. I might lose my apartment because of this. =S

Our family doctor thus far has been absolutely terrible (never answers his phone, takes forever to return messages, never in during his "office hours", ridiculous wait times, bad about scheduling tests... I could go on). We just changed to a new guy, however, after a few visits I'm wondering if he's much better. Doesn't seem to be taking what I say seriously (I'm 19 y.o.) The first few times I saw him, he tried to sell me the "nervous stomach"/"stressed" idea, but I'm not buying it.

Recently, he's been stuck on the idea of Irritable Bowel Syndrome, which indeed this may be, but I'd like to test for as many other things as possible before jumping to that conclusion. He basically said that if the endoscopy doesn't show anything, that I have IBS and that was that. But I haven't heard of IBS causing such sharp, severe pain.. and what about the weight loss? Admittedly I've been doing a lot of exercise (because of work) and haven't been eating the best I could, but that's almost 10% of my body weight.

I've had an endoscopy scheduled, but it's not until Sept. 21st. Until then, my doc. doesn't want to do any other tests. He prescribed me Buscopan until then.

I've been tested for H. Pylori, and had the blood test for Celiac. Both of them gave back negative. I've been to various clinics, was put on Zantac first. No change, was put on Pantaprozole instead. No change. After a trip to the hospital a few weeks ago, I was put on Raberprazole. No change. Haven't started the Buscopan yet, hoping to soon.

Why I think it might be Celiac:

Prior to this:

-I've been bloated for a number of years. I assumed it was because of untested food allergies. My last test (November '10) showed I had a mild allergy to wheat and dairy, a few more nuts, and pork, in addition to peanuts. I'm confident that the symptoms I have now aren't caused from the allergies. when I have a glass of milk, for example, within half an hour I have increased bloating and diarrhea.

-Lactose intolerance. Used to be? Still am? Quite unsure at this point. After noticing that milk products bothered me, I started drinking lactose free milk and using lactase enzymes. There was significant improvement. In the last year-ish though, even lactose free milk makes me sick. I've switched to soy.

-General fatigue.

-Chronically underweight, despite many attempts to change that. (110 lbs is actually the highest I've ever been, and I was quite proud for the increase =P)

So...

A hernia and stomach ulcers are also on the table... but looking at all of these symptoms together, I can't help but wonder if Celiac is behind it all.

Has anyone else had sharp stomach pains like this? Or even a combination of the symptoms I've listed? I'm tempted to cut out all gluten from my diet, but I'm afraid that it will mess with whatever biopsies I get done in the next few months. And from what I've heard, the blood tests aren't accurate, and the biopsies aren't 100% either.

Opinions?

Thanks again for reading!

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Yes. You should get tested for Celiac. Keep eating gluten because a gluten-free diet will cause the blood work & endoscopy ( if you have one) to be negative. Blood tests are accurate for most people but there is a chance of false negatives.

I have an 18 year old son. He likes me to go with him for doctors appointments because they treat him more seriously if I'm standing there. ( Gads! Horrible sentence structure!). The only doc that treats him seriously, and as and adult ,( and has for 4 years) is the eye doctor. Anyway, maybe if a parent was standing there backing you up and demanding a solution, it would help.

Here's some info about blood tests

http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

If you live near Chicago or want to visit someone there, they have a free blood screening coming up.

http://www.celiacdisease.net/free-blood-screening

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I agree with everything kareng talked about! With one additional note...with IBS your pain will be most likely be in the form of spasms while with celiac it will most likely be more sharp or shooting pains. This note is what made my doctor agree to a celiac test. Hope it gives you the same help it did me!

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@kareng: Thanks for the links, but Chicago is a tad far for me - I'm just north of Toronto. My dad doesn't care/is always working, and my mom is of the opinion that it's all in my head because of stress. -.-" (Thanks Mom...) Got the beginning of a lecture about it today. Like, the last year has been rough.... but again, I haven't heard of stress causing this kind of pain, or a number of my symptoms. =/ So I'm not sure how much help either of them will be. The doctor was definitely more polite when my mom was around though.

@Krystynnycole: Ahh, that's interesting.. Often my pains are sharp, so I should bring that up with the doc. next time I see him. (On my last visit, he went off on a tangent saying I can tell the gastrologist to do any test he thinks will give me a diagnosis... but without that in writing, I'm not sure whether it will make an impact on what the gastrologist can and can't do?)

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@Krystynnycole: Ahh, that's interesting.. Often my pains are sharp, so I should bring that up with the doc. next time I see him. (On my last visit, he went off on a tangent saying I can tell the gastrologist to do any test he thinks will give me a diagnosis... but without that in writing, I'm not sure whether it will make an impact on what the gastrologist can and can't do?)

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Aghn. Apologies for the uber late reply. New job + moving have made the last few weeks crazy.

Haven't seen the family doctor yet, but likely will after the endoscopy. The consultation for it is tomorrow.

Unless the results come back definitively showing a different cause, I'd like to go on a gluten free diet ASAP. If I don't have Celiac, the it won't hurt me... And if I do, it can only help. Would I be able to start the diet before my endoscopy without affecting the results?

I need to put on weight. Period.

I'm just getting over a terrible stomach flu (included stomach cramping/pain, which was unusual for me.. usually I just sleep with a bucket by my bedside). I was only down for a few days, but according to the bathroom scale I'm now at 96 lbs. I'm 5' 6". Scary stuff. I feel like a skeleton, and everyone is commenting on how I look tired all the time/appear to be wasting away. How soon after starting a gluten-free diet does weight gain usually start?

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DO NOT GO GLUTEN FREE!! It will skew your tests and you may get a false negative. You need as many antibodies in your body as you possibly can for testing. If you stop eating gluten, you stop producing antibodies. WAIT!!!!

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Yes, most definitely wait until all testing is done!! Your symptoms sound very much like celiac, so I hope you get a diagnosis from your endo. Ask them to also do a colonoscopy at the same time to rule out any other issues.

And with your endoscopy, ask them to take 8-11 biopsies to minimize the risk of missing something!

Good luck with it all x

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I totally agree with the others...but would like to point out something.

When I found out I was celiacs I ALSO found out I was CASIEN intolerant! I had never heard of that before...I thought that I was Lactose intolerent but found recently that even lactose free bothered me! My dr. told me NO dairy because of the casien and ALSO hidden gluten (Binders and emoulsifiers) often over looked because of what they're listed as! :unsure:

Really scared for you...hope you find answers soon... :unsure:

Hope you feel better soon!!! :)

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Went for the endoscopy, and they did the biopsy (they took 2 samples). I got a call from my doctor's office this morning: both came back clean.

I don't know what to think.

I had another attack of stomach pain the day before yesterday while I was at a friend's place. I had orange juice 3 hours before, and pasta with meat sauce an hour before that. (yet this is the first *severe* attack I've had in a while) Couldn't sit up. Had to lie down, which reduced the pain, but when I tried to sit up an hour later it came right back.

(Possibly relevant: yesterday I hadn't eaten for hours, and was really hungry, so I had a snack-size coffee crisp. I have mild stomach pain, nausea, and diarrhea a few hours later. Not so long ago, I had a king size coffee crisp and no reactions like this.)

Ideas of anything else that could be causing this stomach pain? There's no way this can be IBS. All I can think is Celiac, or at least a gluten intolerance.

Considering going on a gluten free diet, even though all of my tests have been negative.

@Cougie 23: I've been wondering if I'm lactose intolerant, but my last allergy test did show a reaction to dairy (assuming I have celiac, is it possible to be lactose intolerant AND have a dairy allergy?). So I'll definitely be avoiding casein anyway!

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Went for the endoscopy, and they did the biopsy (they took 2 samples). I got a call from my doctor's office this morning: both came back clean.

I don't know what to think.

I had another attack of stomach pain the day before yesterday while I was at a friend's place. I had orange juice 3 hours before, and pasta with meat sauce an hour before that. (yet this is the first *severe* attack I've had in a while) Couldn't sit up. Had to lie down, which reduced the pain, but when I tried to sit up an hour later it came right back.

(Possibly relevant: yesterday I hadn't eaten for hours, and was really hungry, so I had a snack-size coffee crisp. I have mild stomach pain, nausea, and diarrhea a few hours later. Not so long ago, I had a king size coffee crisp and no reactions like this.)

Ideas of anything else that could be causing this stomach pain? There's no way this can be IBS. All I can think is Celiac, or at least a gluten intolerance.

Considering going on a gluten free diet, even though all of my tests have been negative.

@Cougie 23: I've been wondering if I'm lactose intolerant, but my last allergy test did show a reaction to dairy (assuming I have celiac, is it possible to be lactose intolerant AND have a dairy allergy?). So I'll definitely be avoiding casein anyway!

Aside from gluten intolerance (regardless of your biopsy), that's a lot of acidic foods (oj and tomato sauce) combined with long periods between eating. That's a recipe for an acid attack for me!

Try keeping the acid diluted with water, eat low acid foods, eat meals close together. That may help. And if going gluten-free helps, by all means DO IT.

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Went for the endoscopy, and they did the biopsy (they took 2 samples). I got a call from my doctor's office this morning: both came back clean.

I don't know what to think.

I had another attack of stomach pain the day before yesterday while I was at a friend's place. I had orange juice 3 hours before, and pasta with meat sauce an hour before that. (yet this is the first *severe* attack I've had in a while) Couldn't sit up. Had to lie down, which reduced the pain, but when I tried to sit up an hour later it came right back.

(Possibly relevant: yesterday I hadn't eaten for hours, and was really hungry, so I had a snack-size coffee crisp. I have mild stomach pain, nausea, and diarrhea a few hours later. Not so long ago, I had a king size coffee crisp and no reactions like this.)

Ideas of anything else that could be causing this stomach pain? There's no way this can be IBS. All I can think is Celiac, or at least a gluten intolerance.

Considering going on a gluten free diet, even though all of my tests have been negative.

@Cougie 23: I've been wondering if I'm lactose intolerant, but my last allergy test did show a reaction to dairy (assuming I have celiac, is it possible to be lactose intolerant AND have a dairy allergy?). So I'll definitely be avoiding casein anyway!

They only took 2 samples? That is ridiculous - you need at least 8-11 for accurate results. It is possible you had a false negative. Perhaps.

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I would go off of the wheat and dairy. In fact, I would do a hypoallergenic diet for a month and see how you feel - no wheat, dairy, soy, eggs, peanuts, nightshade veggies, citrus, artificial sweeteners, coffee and alcohol. Add one food group at a time back in your diet for 2 weeks at a time to see how you react.

Depending on your insurance I would see if you could have a 24 hour ph and motility. It is possible something like physical like achalasia or gastric outlet obstruction is the cause. Have you had a gallbladder ultrasound?

I'm sorry.

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Hi SilverC,

Some people with celiac never test positive. They still have celiac. Other times people don't test positive and are told they have NCGI (non-celiac gluten intolerance). Either way, the treatment is the same, avoid all gluten. You are right, the gluten-free diet won't hurt you, so it is another very good and valid test. If you go gluten-free and have symptom improvement then that is your bodies way of telling you "stop eating that junk!".

To start gluten-free diet avoid all processed foods and stick with whole foods cooked by yourself. A simple diet with low amounts of spices is good. Take a look at the lists of top 8 food allergens and eliminate all of them just in case. You will end up doing a lot of cooking so sometimes it is easier to make large batches of food and freeze some of it for later. Avoid all restaraunts and eating food other people make.

The only way to know for sure what you are eating is to make it from scratch yourself. Don't trust other people who don't understand the issues to make your food.

Give the gluten-free diet a good 3 to 6 months or more before you decide if it is working or not. But record your symptoms in a diary each day from the start (or now for that matter) so you can look back and remember how you felt and what you ate that day.

Some of the other foods that celiacs tend to have problems with are nightshades, dairy, soy (big one) corn, eggs etc etc. You can develop an intolerance to any food, there are no restrictions on what can make you sick food wise. some people regain the ability to eat some foods after a while, say 6 months or so. Others don't, it is not a fixed thing.

And Happy Halloween! :o

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