Dr.'s Think I'm Nuts!

[emileigh79]

Hello All,

I am a 29 year old woman who has been struggling with the same symptoms for years and have not found any diagnosis. I am frequently bloated (look like I'm pregnant), stomach pains that are at times very severe, fatigue, headaches, difficulty putting sentences together at times, and also the inability to concentrate or form words...everything that points to Celiac. The only thing I don't have is the weight loss. I've been the same 140 pounds for 5 years, so no dramatic drop in my weight like everyone talks about. About 2 years ago I went and got food allergy tested. They did a skin test and I came back allergic to dairy, eggs and soy. I cut all of those products out of my diet but still had the symptoms. About a year ago I had a severe stomach pain attack while at work, was rushed to the ER and they presumed it was my gall bladder. My dad and my sister have both had theirs removed and so they thought it was somehow related. Did the CT scan and everything was normal. Did a gall bladder funcionality test that came back normal, and all my blood tests were normal, so they ended up sending me home 6 hours later with a vicodin prescription. After that I started googling my symptoms. Came across this website along with others. I thought...this is it! This is what is wrong with me! So, I immediately cut gluten out of my diet, and started feeling better. I had more energy, the bloating was less and less. So I went strict. Did my research, cut it all out! I basically eat from the ground...nothing from a box, only natural foods. I went to the dr. to get the blood test. Came back negative. WHAT?!? Seriously! Here this Dr. has given me every test known to man and probably thinks I'm a whack job! So I went back to eating gluten, noticed all my symptoms returned even noticed the behavioral symptoms. Since then I've been tested for MS, had an MRI, another gall bladder test and one more celiac blood test. Every single test is normal. I was even re-tested for food allergies and that came back normal (which conflicted with my diagnoses 2 years ago) I am not crazy! It is just frustrating to go through this and to feel like nobody understands and they all think you are nuts. So this is the question I pose...should I continue to cut out the gluten in my diet? Should I replace all my cooking pans to avoid gluten contamination, should I buy only gluten free shampoo, toothpaste, should I stop drinking sodas because of the barley in the caramel coloring will cause a reaction? Should i do all this even without a diagnosis?

Seems to be some sort of connection with autoimmune diseases. My dad has MS, my sister Thyroid cancer and my mom lyme disease. Seems to be a connection but still at a loss for what to do.

Signed,

Crazy in Texas

[Salax]

Wow, I feel ya. The docs have been thinking that "its all in my head" for the last 9 years. So I feel ya. IMHO you have 2 options.

1. Drop the doctors, stop eating gluten...infact don't eat anything but fresh meats, veggies, and fruit. Do it for a while. See if you feel better. If so, bring back some starches. Rice for example. If you are feeling good. Stick with it. You can try to eat gluten foods at that point and if you backslide to sickness again, you know it's gluten. = Self Diagnosis

2. Find a specialist, keep eating gluten until you can get tested by someone who knows what the heck they are doing. = Doctor Diagnosis

Personally, I think we all know our bodies better than a doctor could. If you have a "gut" feeling about it, go with it!

It's your body and your life, don't leave to chance.

Best of luck,

[nw0528]

Did you have negative biopsies too?

Nicole

Hello All,

I am a 29 year old woman who has been struggling with the same symptoms for years and have not found any diagnosis. I am frequently bloated (look like I'm pregnant), stomach pains that are at times very severe, fatigue, headaches, difficulty putting sentences together at times, and also the inability to concentrate or form words...everything that points to Celiac. The only thing I don't have is the weight loss. I've been the same 140 pounds for 5 years, so no dramatic drop in my weight like everyone talks about. About 2 years ago I went and got food allergy tested. They did a skin test and I came back allergic to dairy, eggs and soy. I cut all of those products out of my diet but still had the symptoms. About a year ago I had a severe stomach pain attack while at work, was rushed to the ER and they presumed it was my gall bladder. My dad and my sister have both had theirs removed and so they thought it was somehow related. Did the CT scan and everything was normal. Did a gall bladder funcionality test that came back normal, and all my blood tests were normal, so they ended up sending me home 6 hours later with a vicodin prescription. After that I started googling my symptoms. Came across this website along with others. I thought...this is it! This is what is wrong with me! So, I immediately cut gluten out of my diet, and started feeling better. I had more energy, the bloating was less and less. So I went strict. Did my research, cut it all out! I basically eat from the ground...nothing from a box, only natural foods. I went to the dr. to get the blood test. Came back negative. WHAT?!? Seriously! Here this Dr. has given me every test known to man and probably thinks I'm a whack job! So I went back to eating gluten, noticed all my symptoms returned even noticed the behavioral symptoms. Since then I've been tested for MS, had an MRI, another gall bladder test and one more celiac blood test. Every single test is normal. I was even re-tested for food allergies and that came back normal (which conflicted with my diagnoses 2 years ago) I am not crazy! It is just frustrating to go through this and to feel like nobody understands and they all think you are nuts. So this is the question I pose...should I continue to cut out the gluten in my diet? Should I replace all my cooking pans to avoid gluten contamination, should I buy only gluten free shampoo, toothpaste, should I stop drinking sodas because of the barley in the caramel coloring will cause a reaction? Should i do all this even without a diagnosis?

Seems to be some sort of connection with autoimmune diseases. My dad has MS, my sister Thyroid cancer and my mom lyme disease. Seems to be a connection but still at a loss for what to do.

Signed,

Crazy in Texas

[elye]

The blood panel is notorious for yielding false negatives -- 30% of the time is an oft-quoted statistic, and I've read even higher numbers. Were you gluten-free when you had the testing done? If so, a negative is almost guaranteed.

For many of us on here, the only truly accurate diagnostic tool for this illness is dietary response. Countless people find an end to all of their debilitating symptoms upon going gluten-free, after "negative" blood tests and a "negative" biopsy. One's lower intestine is twenty-two feet long, and patchy bits of damage can be easily missed with the camera and/or scalpel.

So, if I were you, and knowing what I do now, I would listen intently to what my body is screaming at me - - "I cannot tolerate this stuff!! It hurts! Keep it away!!" -- and go totally gluten-free, and start my new, healthy life. You have a diagnosis, not from a lab but in my opinion the most bang-on accurate to be had anywhere.

Best of luck!

[Takala]

Q.Should you continue to cut all of the gluten out of your diet ?

A.Yes. Based upon your self monitored, positive response to a gluten free diet.

Q. Should you do it now or later ?

A. Depends on whether or not you feel you need a formal medical diagnosis to go about your life.

The drawback is that you will have to eat gluten daily for weeks to prime up your body's response to make antibodies to gluten proteins again that will show up in the bloodwork. There is no guarantee that you will have positive blood results. Some of us slip through the cracks. Last year my PCP unknown to me ahead of time, decided to run a blood test for the antibodies along with other thyroid tests, well, after over 5 years, it's too late now, so of course I am still listed as negative. Since I have never passed a blood work test for my other diseases (by the way, not unusual ) I officially have nothing at all wrong with me other than my x rays prove I have arthritis and my past medical records show a lot of problems.

If you did manage to eat yourself into oblivion and get a positive antibody test, then the doctor is very likely going to insist that you also get a positive biopsy for intestinal damage, only then is he or she willing to play nice and bestow the Official Diagnosis Princess Tiara upon your brow, otherwise, you're still out of favor with the Medical Court.

The reason I'm both snarky and cynical is that I also have the neurological form of gluten intolerance that mimics MS, and the medical profession has no idea what they're doing when they see one of us, and they tend to get hostile when their pet theories of what could be wrong are proven to be bogus, one by one. I went thru a period of several years where, after I started figuring it out, I told them repeatedly it was food related for me, and got blown off. I no longer care if they sanction my diet from any official viewpoint, they are merely to avoid glutening me or there will be he(( to pay. I still get this "it can't be gluten intolerance because you're not celiac by the book" response sometimes, but if there is a chance that this was said because of ignorance, I gently correct them, as I can't really expect somebody like an ob- gyn to realize that (example) cystic ovaries are one symptom of an auto immune response kicked up by a response to wheat proteins and that diet change cut down drastically the endometriosis symptoms.

There are other people here who can explain the genetics of this a lot better than I could, if I get curious enough I may go ahead and get tested because for that to see if their guesses match what I have. The genetic understanding is growing by leaps and bounds every day, at the time I abandoned wheat nobody was talking about this, and now you can do it without a doctor's permission, even, thru Enterolab.

Here's one of shortest best explanations of the DQ genes, from the genealogy forum. Unfortunately the last sentence is goofed up as 43% of the population of the United State is much larger than 3 million people. It would be about 130 million. Carrying the genes does not mean you automatically get the diseases, it means you have the ability to get them if you are triggered.

Open Original Shared Link

The DNA test of the HLA DQ region of Chromosome 6 show only a predisposition to develop either Celiac Disease and/or Gluten Intolerance. If a person inherits one or two DQ 2 B or DQ 8 B alleles they are much more likely to develop problems. People who inherit 2 DQ 2 B alleles almost always develop Celiac Disease sometime during their life. Studies show that about 43 % of people in the US - about 3 million people - have at least one of these alleles (genetic markers) which predispose to Gluten Sensitivity.

here is a link to a wiki article that has more explanations about the genes and gluten sensitivity

Open Original Shared Link

Keep in mind if this is what you've got, you inherited it from at least one parent if not both, so you may want to, especially based on your family history, suggest that your parents and siblings also get tested. The good news is that if it is a neuro form, if you stick with the diet eventually you do get better. Unfortunately the current wikipedia article has a line in it that states this is the opposite, and that is dead wrong. Idiopathic means that the cause is unknown yet, not that something does not have a cause.

[sugarsue]

One thing that I think is so cool is that you can eat whatever suits you best and you don't have to have a doctor's permission for it. Once you decide whether you need a diagnosis or not for yourself, then you can do the diet and feel better. You don't need gluten to live a healthy life and if it takes away your symptoms, it's well worth it.

I have a blood test that says I'm allergic to wheat but no doctor ever suggested I actually cut it out of my diet. Once my daughters had to stop eating gluten, I stopped the wheat and I've never felt better. I don't even bring it up with my doc's.

Good luck to you in whatever you decide is best!

[whitball]

I certainly understand your frustration. It took me almost 15 years to finally get a diagnosis. I have spent thousands and have been called a hyperchondriac (I can't spell either!), been told it's in my head, etc. I questioned everyone because I just didn't feel that what I was being told was the right diagnosis. It finally took the abdominal adhesions that I suffer from to get me set up with a doc for a consult to look to see if I had a bowel obstruction. I told him of my other symptoms and he ordered tests to see if I had Celiac disease. Finally found someone to listen. My advice is to not go through this any longer. You know what helps you feel healthy. Follow the diet and save yourself some hassle and don't continue to allow the poison into your body. Good luck to you.

[emileigh79]

Thank you all for your advice and words of wisdom. I've never had a biopsy because my doctors haven't ordered one, especially with all my negative tests. Sometimes I feel like, 'why am I doing all this, going through all this hassle' without a proper diagnosis. But at the end of the day, like you all say, if you feel better without it... don't eat it. Thanks again!

[Lisa16]

Hi!

I just wanted to add that if you had been gluten free prior to having the bloodwork, your test would come back negative.

From what you wrote, it sounds like this may have been the case.

[wilem008]

Oh, I can totally relate to this...in fact - have a read of my latest topic called "I feel like im running out of options" in the "Coping With" section of this forum.

Im the same as you....I have had every test possible (except a skin allergy test), Ive even had the colonoscopy/endoscopy and all my tests have come back normal!! Doctors think its all in my head and want to put me on anti depressents for my so-called 'depression'....im not depressed, im sad because I feel sick all the damn time!! *sigh* its so frustrating....

Anyway, im sticking to my gluten and lactose free diet and im going as strict as I possible can!!

Im done with doctors....my naturopath was really good! She was really supportive!

Good luck, hang in there!

x Wilem

[mushroom]

Doctors think its all in my head and want to put me on anti depressents for my so-called 'depression'....im not depressed, im sad because I feel sick all the damn time!!

I don't know why it's so hard for doctors to understand this; it's pretty basic really. How can one be happy and joyful when suffering in misery. They seem to understand this if someone has lost a limb or is paralyzed, but if they can't "see" your suffering, then it doesn't exist, it is all in your head. I wonder how many of us have had psychiatric help recommended to us, when all we needed was an accurate diagnosis. (Puts hand up!)

Hang in there, and if necessary do what I did and just quit the gluten. Have never regretted for a minute that I did not pursue a diagnosis. Feeling better (after identifying and conquering as many of the side-effects of gluten as possible) is enough in and of itself. And it has the additional reward of saying, well, you may have graduated from medical school, but there are medical things that I know more about than you do. So there! I have had to tell my doctor how to treat me, and she has seen my sadness and crying disappear as I get better and better. I still have psoriasis and RA but identifying all my nutritional deficiencies and treating them has made me feel every so much better. (Vitamin D, B12, folate were the main ones for me--have you had these checked?) Others are very low in iron, zinc, magnesium. If you haven't had all these checked you should do so.

By the way, I had about 50 lb weight gain, unexplained, because I ate much less than anyone I knew. Lost 44 lbs when gluten free.

[krystal]

I wonder how many of us have had psychiatric help recommended to us, when all we needed was an accurate diagnosis. (Puts hand up!)

*raising my hand*

I told my doctor "Of COURSE I'm depressed! I haven't been out of bed in three months and I can't SLEEP!!! Now, figure out why!"

[wilem008]

*raising my hand*

*raises hand*

Im putting my hand up. That was one of the first thing a doctor told me.

"There's nothing wrong with your stomach - the reason you're having these stomach problems is because you're depressed - can I suggest a course of Anti-depressents?"....

Umm. No. I have refused anti depressents - im sad because im sick, not sick because im sad.

One of my symptoms when I get glutened is depression.

*sigh*....frustrating doctors - they cant see beyond what's written in their text book!

[Tallforagirl]

So this is the question I pose...should I continue to cut out the gluten in my diet? Should I replace all my cooking pans to avoid gluten contamination, should I buy only gluten free shampoo, toothpaste, should I stop drinking sodas because of the barley in the caramel coloring will cause a reaction? Should i do all this even without a diagnosis?

Before you do so, consider pushing for an endoscopy/biopsy because it's perfectly possible to get a diagnosis based on biopsy alone, and plenty of celiacs test negative for blood, but positive on biopsy. There's also a chance there may be something else going on inside that needs attention.

After that, regardless of the biopsy result, you can still go gluten-free, it obviously helps you at least in the short term.

[Crystalkd]

I understand EXACTLY how you feel. I got VERY sick in a 12 hour period and the doc said I was stressed and depressed and blamed it on depression and Cerebral Palsy. He sent me to a shrik who said there was nothing wrong with me. Finally I was sent to a gastro when I started dropping weight QUICK. All the tests came back negitive including the ones for ceiliac. After the biopsy and before the results I made an appointment with a new doc and went gluten free. I had nothing to lose. I ate a sandwich before going to the new doc and was in pain when I got there. His responce was: We treat people not test results. You're results say your fine your body says you're not. DON'T EAT GLUTEN AGIAN!!! This doctor has found many things others have missed. I feel SOOO much better!! I have one more thing to figure out and I think that will be answered tomorrow!

If you're body is reacting to the gluten even without positive results don't eat it> The tests can be easily messed up even the biopsies.

[wendstress]

Coincidentally, I have a friend going through a very similar situation. Blood tests have been negative, biopsy was even negative. But she simply feels TERRIBLE when she eats gluten. So, she is stopping eating it.

One other thought - I recently found out that in addition to the Celiac, I have lymphocytic colitis (aka microcolitis). I'm learning about the LC, and don't totally get it yet....except that the symptoms are nearly identical to Celiac. I've been reading in a forum that is all about this condition and the vast majority of members have gone gluten free to control their symptoms with success. I guess what I'm saying is that it is possible you don't have Celiac, but still have *something* that is preventing your body from properly digesting it.

Listen to your body - it knows best!

[thleensd]

*raises hand*

(one of my glutened symptoms? anxiety!)

Me too! Based on the response here, I hope you at least don't feel alone.

My blood work was negative. Fortunately I got the biopsy done, and that was positive.

Not uncommon! Good luck.

*raises hand*

Im putting my hand up. That was one of the first thing a doctor told me.

"There's nothing wrong with your stomach - the reason you're having these stomach problems is because you're depressed - can I suggest a course of Anti-depressents?"....

Umm. No. I have refused anti depressents - im sad because im sick, not sick because im sad.

One of my symptoms when I get glutened is depression.

*sigh*....frustrating doctors - they cant see beyond what's written in their text book!