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Misdiagnosed?


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#1 MysteryDiagnosis2012

 
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Posted 16 July 2012 - 05:58 PM

Hello! Thank you for reading this and I'm hoping to find answers from people who directly deal with the issues of Celiac Disease, rather than the mixed answers I am getting from my doctors.

Hopefully I can make a long story short:

In 2006 - I noticed a change in the way my body was digesting food. After a lot of things I ate, I would have diarrhea up to 2 or 3 times a day. I didn't notice any foods in particular, it was random.

Fast forward to 2011 - I had been dealing with daily diarrhea for a long time and it became my norm. But in May of 2011, I had the worst crippling stomach pain I had ever experienced. I couldn't breathe nor move when the wave of pain hit. It seem to cover my entire abdomen and would come in waves probably every 5 minutes. I was so frightened, that I went to the doctor the next morning. I hadn't eaten that day, and the pain seemed to have disappeared. The doc did say I was slightly anemic. I left it at that.

But a week later, the terrible pain again. This time, it left my stomach sensitive for 2 days. Again, I ran back to my physician in a panic. Nothing. Again. They sent me for an ultrasound of my stomach, but it was normal. For about 3 weeks, I had the worst experience with food. It was after everything I ate. I was in the bathroom so much, that I had started passing black stools. I got scared and went to the ER where they didn't find anything but a dehydrated me.

After May 2011 and my experience with the stomach pain, I assumed that maybe dairy was bothering me. It was then that I had decided to give up dairy and just focus on my vegetarian diet, now vegan. The first day, I had Morning Star chicken nuggets, and the pain was so bad after eating them, that I was in tears. I started eating antacids like candy. I typically had to sleep off the pain or take a really hot bath.

I had ruled out the diary part. It wasn't that. I had been told that IBS may possibly be the issue. I welcomed any thought because I was so confused as to what was going on with me.

As 2011 progressed, my reactions were happening more often after eating. Where before it would be one thing that day that bothered me, it was becoming a constant thing. Anytime I ate.

In 2012 - I had to give up Mexican food. The pain in my stomach after eating it was so horrible. I felt the urge to throw up while sitting on the toilet and moaning over the ache. Nothing helped. It would last for hours. I started avoiding Mexican food and it became one less worry in my diet.

2012 has also proved difficult on some other foods. Every time I ate out at work with a grilled cheese sandwich on multi grain bread, I would bloat so bad, it hurt to sit up straight. A lot of breads were starting to give me bloating and discomfort.

After seeking a new physician this year, I was diagnosed with a B12 deficiency. She tried me on anti spasm meds for IBS, in which no relief came from that, so after doing 3 months of bi-weekly B12 injections and 1000mcg orally, when I went back to have my blood tests redone, I had asked for a celiac panel. I was desperate and my symptoms were matching a lot of what I was reading. I had started to experience restless leg syndrome and was so fatigued that I am late to work almost every day. Regardless of how much sleep I get. My blood tests still showed a B12 deficiency and now a very low iron count. The celiac panel came back negative.

2 weeks ago, after one more meal of crippling side effects, I decided to go the extreme and start a gluten free diet. I wasn't getting answers anywhere else and it was a last resort for me. I noticed that I had started to feel lighter, more clear headed and less fatigued. The clear headed part is huge, because my concentration had gotten so bad, that I was driving the wrong way home and had rear ended two different cars on two different occasions. But again, I felt more in control after going gluten free. In those 2 weeks, I had not had diarrhea once. Not once. But after my primary physician suggested seeing a new GI, I agreed and went.

Today 07.16.12 I went to a new gastroenterologist to seek answers. He asked about my symptoms and right away said "Your celiac panel came back negative, so you don't have Celiac. You have IBS and you need to accept that." I tried to explain to him, that regardless of whether it was Celiac or IBS, I had noticed great improvement in my digestive system since going gluten free. I was sore in my stomach the first week, and the second week felt stronger as though something was healing. As I was telling him about this improvement, he shook his head with a grin and said "You don't have a problem with gluten. You have IBS. So many patients do the gluten free diet and say they feel better, but it's a placebo effect." I was shocked. And felt humiliated that I felt so much better, yet he told me that basically it was all in my head.

So after the appt. I ate a cookie containing gluten. I bloated for about 20 minutes. I came home from work and ordered a pizza with breadsticks and had to step away in the middle of eating to go to the bathroom...with none other...diarrhea.

I am so frustrated. What is this? Is anyone else experiencing this? I have an upper endoscopy scheduled for July 20th, but at this point, I just wanna make sure nothing serious is going on. But I would like to hear diagnosed celiac individuals on this. IBS or possible gluten sensitivity? Help!
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#2 rosetapper23

 
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Posted 16 July 2012 - 09:53 PM

First of all, IBS is a symptom, not a disease. It is very obvious that you have a problem with gluten. It doesn't matter if it's bona fide celiac disease or gluten sensitivity--you need to stop eating gluten. Stop seeing ignorant, uncaring doctors. We all stopped seeing them! You know what's best for you.....and, believe me, we also know what is best for you--avoid gluten for life. Welcome to our exclusive gluten-free club!
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#3 eatmeat4good

 
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Posted 16 July 2012 - 10:51 PM

Yeah, it's not possible to stop seeing uncaring and ignorant Dr.'s...they will shrug their shoulders and say IBS to a million people before they wake up to the fact that Celiac exists and 90% of their patients probably have it!

Soooo...

Just go gluten free and get your life back.
It's a miracle to watch yourself get well.
I think you have done enough elimination and re-introduction to know that Gluten is the problem.
Really hope you feel better soon.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#4 tom

 
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Posted 17 July 2012 - 12:15 AM

...
Today 07.16.12 I went to a new gastroenterologist to seek answers. He asked about my symptoms and right away said "Your celiac panel came back negative, so you don't have Celiac. You have IBS and you need to accept that."
...

IMHO this Dr's a jackass & it's infuriating that this type of Dr isn't rare.
With quotes like these I'm surprised I recently repeatedly have to defend the Drs who wrote "The Gluten Effect" for not being MDs.
MDs who aren't up to speed on Celiac/gluten are all too common.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#5 mommida

 
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Posted 17 July 2012 - 05:42 AM

Are you sure you had the full Celiac panel?
When you tried the gluten free diet and felt better, that is actually scientific data. The doctor wants to call it placebo effect. Did you have any accidents? Did you pop something in your mouth that just seemed like it just couldn't have wheat in it, and felt ill after?

You have a personal choice to make.

Stay on gluten and get tested (starting with a new doctor). ;) You will also rule out any other disorders during a scope.

Go off gluten feel better (then time takes it toll and you wonder if you can eat that)

IBS is the lamest thing. Doctors don't get paid if they don't write down a diagnoses, so they invented IBS.

*Processed gluten free foods ~for the most part~ are not vitamin enriched and fortified like main stream processed foods.* First the gluten free processed foods are for people avoiding allergens, add more things and you will exclude another food allergen group.

I switched from one brand of gluten free, egg free, and pea free bread for the brand that was enriched with Thiamin(B1), Riboflavin (B2), Niacin, Iron, Folic Acid and Vitamin D.

Gluten free in our home means we eat more fruit& vegetables, meals prepared at home, definately no preservatives are in our baked goods. I can say we are eating a healthier diet. Even on processed items~ when you read the label you tend to make a healthier choice. :D
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#6 MitziG

 
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Posted 17 July 2012 - 06:08 AM

I like Takalas idea! Ignorant doctors abound! Honey, you have a problem with gluten. Maybe you aren't celiac, but who cares? Gluten is messing you up bad, and you don't need a drs permission to feel better.

So, two options here. You can start eating gluten again, hunt down a more knowledgeable doctor (good luck, they are few and far between) and get thorough celiac testing, including endoscopy. You must continue eating gluten the entire time. And you may get a celiac diagnosis. Or not. But a knowledgeable doctor will diagnose you as gluten intolerant, tell you to go gluten free and send you on your way. You will get validation, a big bill, and probably spend a few more months being sick.

Option two- you say screw it. Stop eating gluten and never look back. No validation from a doctor, possible skepticism from friends/family who think you are being too extreme...but you get your health back quickly.

I say of course you have IBS- irritable bowel syndrome. Something is irritating your bowels. It seems you have found out what, specifically. Congratulations!
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#7 mommida

 
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Posted 17 July 2012 - 06:27 AM

Like Mitzi said I think it's pretty clear gluten is causing your problems here, but further testing can eliminate other causes too. :rolleyes: H. Ployri, SIBO, and the list goes on.
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#8 beachbirdie

 
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Posted 17 July 2012 - 06:39 AM

Hello! Thank you for reading this and I'm hoping to find answers from people who directly deal with the issues of Celiac Disease, rather than the mixed answers I am getting from my doctors.



So many great replies have already been given, I can only say "amen" to all of them.

I would encourage you to get copies of your lab work and see what tests they actually did. Too often they do only one or two of the tests available to them, and they miss a lot of true celiacs that way! Celiac testing has a 20-30% false negative rate.

Do you know if they are planning to do any kind of biopsy with your endoscopy? I would ask them to do the celiac biopsy even if the doc thinks it's "just IBS". IBS is just a catch-all label when they don't know what else to call your symptoms.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#9 KMMO320

 
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Posted 17 July 2012 - 09:09 AM

You sound so much like me. I dealt with my stomach/digestive issues for 18 years. It just became normal for me to know where the bathrooms are everywhere I go. It became normal for me NOT to eat at friends and family's houses because I knew I would end up in their bathroom with people waiting to use it, and having to go in after me (embarassing!). It just became routine. A GI 13 years ago told me, IBS and turned me loose. I tried elinating greasy foods, dairy and eggs but even if I had a single cracker,or a few spoonfuls of canned soup, it would send me to the bathroom minutes later.

I went to my Primary for routine blood work (hypothyroidism) and my vitamin levels were low (Iron, B12 and D). That, my rapid weight gain, 30lbs in 2 months,and my list of other complaints, mostly fatigue,migraines, brain fog, chronic sinus infections, made her send me to a GI.

THAT GI did an Endoscopy and ran blood work and a Celiac gene panel and when everything came back Negative, she handed me soem vitamins and said she would see me in 3 months. I said what is wrong with me then, and she said IBS...even though I had a host of other problems. She never thought I had celiac or gluten problems in the first place so she wasnt really looking. I am IGA deficient and she ran only IGA based tests.

be that as it may, I may not have Celiac Disease and thats GREAT, but gluten is DEFINITELY my problem. After she did her tests, I had 3 weeks until I had a follow up with her, so I went gluten-free and FELT FREAKING AMAZING!!!! I slept well, I could breathe out of my nose, I had NORMAL BOWEL MOVEMENTS!! I could eat and then go shopping and not have to leave my carriage somewhere to run for the bathroom. Such a small thing most people take for granted but for me thats amazing!! I was in awe of my body. my headaches went away, I had energy. I woke up feeling ready to face the day.

So after my GI told me it was nothing..I told her how I felt and she said, still..there is no medical evidence to suggest you go gluten-free and I dont reccomend it, its hard and expensive to maintain. And that was that.

At first I was just going to go without a dr and just gp gluten-free but I couldnt let it go. So I made an appointment with the Celiac Center in Boston and they admitted that it sounded like I was Gluten Intolerant and possibly have a wheat allergy and suggested I go gluten-free ASAP. It was expensive and time consuming but they validated what I knew.

Bottom line is you dont need a Dr to tell you to go gluten-free, if it makes you feel better, then there is your answer. As there is no treatment for it anyway aside from going gluten-free, it cant hurt.
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#10 MysteryDiagnosis2012

 
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Posted 17 July 2012 - 07:29 PM

First of all, thank you so much to everyone who posted!

Here are the test results my doctor provided me with:

TISSUE TRANSGLUTAMINASE AB, IGA - <3

IMMUNOGLOBULIN A - 134

GLIADIN (DEAMIDATED) AB (IGA) - 7



and then the rest were vitamins and whatnot. This appears negative, and that's what I was told. I have been eating gluten the past couple days due to what my most recent doc said and have noticed symptoms that I once had, but had not paid attention to before. Now that I have seen the difference in my body eating gluten, to not eating gluten...I notice it like crazy.

Today, I had a terrible time concentrating, my brain is one of the most effected parts of this symptoms list. I get disoriented, I can't form sentences correctly. It's embarrassing. I have a bachelors degree working in my profession and it's sad to become almost dyslexic in my sentence structures. I can't count money correctly the first time. It really is scary.

I also felt body twitches today. I had noticed that it almost feels like low blood sugar or something and I need to eat. I used to get this all the time before I went gluten free but didn't think there was a connection between that sensation and eating gluten. But those 2 weeks gluten free were the best I've felt in years. I think after reading your replies and posts, I am going to cancel the endoscopy. I feel as though the doctor is already bias and therefore making the test results invalid. I have been told by my boss to see her doctor, who is a Vanderbilt University Medical Professor, who apparently stays very up to date on medical research and findings. I think at this point, seeking validation was important to me because I have spent so much money and time with doctors trying to figure this out. I just can't accept that this torture is simply due to IBS. Something that people get told they have, when nothing else tests positive.

I am so confused sometimes though, because today I ate pasta, and was in the bathroom within 30 minutes. Then just about a half an hour ago, I ate a sandwich with bread and Arby's french fries. These fries before have made me sick, but in this very moment, I feel ok. A little bloated, but not the same sick reaction I got last time I ate them. So is it normal to have these varying degrees of effects after certain foods? Even if once before it made me extremely ill, and now, just a slight reaction? It may be too soon to speak. We'll see.

Either way, I plan on going gluten free again tomorrow. I just flat out do not like the way I feel. Especially noticing the difference now. I love food. Cupcakes, bread, you name it. But the discomfort and nasty sluggish feeling isn't worth the 30 minutes of satisfaction I get from eating those things. So, I'll be returning to my diet. Thank you again for all your replies. I feel more confident in reading my body's signals and feel as though I am not alone in my struggle. Thank you.
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#11 kuumeilani

 
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Posted 18 July 2012 - 05:07 PM

Wow. Interesting how doctors react. I tested negative for celiac, anemic, and thyroid. Everything is normal. The day I went to get blood work, I decided to try gluten free. It's been a week and have noticed some changes. Today I forgot my lunch an went for ramen noodles. I got bloated and gassy. I'm self proclaiming I have a gluten intolerance. I already self proclaimed lactose intolerance. That one was getting bad I eliminated it from my diet and have been feeling so much better. I hope gluten is what is still making me gassy, bloated, irritable, exhausted (I can barely wake up to workout even after a great rest), diarrhea, and that fatty bowel thing.
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#12 eatmeat4good

 
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Posted 19 July 2012 - 01:59 PM

This is dedicated to MysteryDiagnosis2012...
...just because she loves cupcakes...

I say, "Let them eat cake! But let it be gluten free cake!"

(best gluten free cake I ever ate in 2 years of being gluten free!)

Chocolate Cake

2 C. Coconut Flour
1 C. Cocoa
1 and 1/2 tsp. Baking Soda
1 tsp Salt
1 C butter
1 and 3/4 C. Sugar
(if you don't use sugar may have to tweak the recipe for sweetener of your choice)
1 and 3/4 C. Half n Half- or in case of dairy free- Milk Substitute (Almond, Coconut, Hazelnut) Not soy!
1 tsp. Vanilla
9 room temp. eggs (put em in hot water for 15 min. if you are in a hurry)
1/4 C. Melted and cooled coconut oil

You can dump everything together and beat it for 7 to 10 min.

Makes great cupcakes, 2 9"Rounds, or one 9x13
Baking time will vary but the 9x13 takes bout 45 min.

Bake at 350 until toothpick inserted comes out clean.

This will save your sweet tooth and let you stay gluten free MysteryDiagnosis2012...plus it's loaded with fiber.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#13 MysteryDiagnosis2012

 
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Posted 19 July 2012 - 08:38 PM

This is dedicated to MysteryDiagnosis2012...
...just because she loves cupcakes...

I say, "Let them eat cake! But let it be gluten free cake!"

(best gluten free cake I ever ate in 2 years of being gluten free!)

Chocolate Cake

2 C. Coconut Flour
1 C. Cocoa
1 and 1/2 tsp. Baking Soda
1 tsp Salt
1 C butter
1 and 3/4 C. Sugar
(if you don't use sugar may have to tweak the recipe for sweetener of your choice)
1 and 3/4 C. Half n Half- or in case of dairy free- Milk Substitute (Almond, Coconut, Hazelnut) Not soy!
1 tsp. Vanilla
9 room temp. eggs (put em in hot water for 15 min. if you are in a hurry)
1/4 C. Melted and cooled coconut oil

You can dump everything together and beat it for 7 to 10 min.

Makes great cupcakes, 2 9"Rounds, or one 9x13
Baking time will vary but the 9x13 takes bout 45 min.

Bake at 350 until toothpick inserted comes out clean.

This will save your sweet tooth and let you stay gluten free MysteryDiagnosis2012...plus it's loaded with fiber.



:D Yay! Thank you , I'm gonna try this recipe!
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#14 justlisa

 
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Posted 23 July 2012 - 02:13 PM

First... The lack of knowledge pertaining to gluten intolerance/sensitivities/celiac/etc has nothing to do with the health insurance debate...it has to do with a lack of knowledge and/or willingness by the mainstream medical community to get its collective head out of its collective rear end...

Second... I have to say that I, quite simply, can NOT understand why folks who have found RELIEF/IMPROVEMENT from going gluten-free (especially when their doctors have not been able to provide them with relief/improvement) would just go back to doing something that they know was harming them?!?!?

Third... While I am very new to this, I have been researching like a mad fool and the information is out there... Simply, IF you are gluten intolerant/sensitive/celiac/etc/etc and you are eating gluten YOU ARE DAMAGING YOUR BODY... And, IF you have damage, it does not go away overnight.

As someone who is dealing with significant health issues, I am very sympathetic to the suffering of others BUT I find that I don't have much patience for the lack of fortitude necessary to help oneself. If you're sick...how badly do you want to get better? Btw, this is not directed, specifically, at the author of this thread...just venting about something that is really starting to bother me...
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#15 beebs

 
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Posted 23 July 2012 - 02:23 PM

I'd find myself an new GI asap - someone who knows about celiac disease, clearly yours doesn't, you can be negative on the tests and still be celiac.
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