I Give Up

[Danijela]

Hey everyone!

I'm begining to think I should just give up and suffer... I've been after a number of DR's for nine months now to find a reason for my

fatigue

dizzyness

balance issues

constipation

extreme thirst

weakness

D

sweating after eating

night sweats

vison disturbances

anxiety

hypoglycemic attacks

throat discomfort

anemia

high cholestoral

shortness of breath

bloating (at times look 9 months pregnant)

gas

weight gain (unable to loose it)

sensitivity to loud noises

I had a Celiac blood screening run... I was told it said "antibodies rule out active celiac disease"

I had been advised by a few members of this board to check into which anitbodies were scanned to make sure they were the correct ones.

When I asked I was told "You don't have celiac that is mostly found in the spanish your not spanish. its all stress. its all in your head. you know people can make themselves sick. your self-medicating. stay off the websites a little information can really make you sick"

Anyways I'm really tired of fighting to get answers....

My GP went on to laugh at me when I requested to see a GI guy and said i've tried everyother avenue why not?

I'm really not being taken serious.

The other night my stomach was so bloated kinda swollen looking my lower stomach felt like it weight 50 pounds just in one spot it was really painful and strange and when i touched it something was sticking out... don't know what that was but it sure was uncomforble.... its the third time its happend in the last 6 months or so......

Thanks for listening

[KaitiUSA]

I would see which tests were run because some can come out to be a false negative.

Also, why not just try the diet to see if you feel better? You have nothing to lose by that. Even if you are not celiac and just gluten intolerant you can get those problems.

You could also look into food intolerance testing to see if there are any foods that could be causing this.

[Lisa]

Guess what? I am not spanish either and I have Celiac Disease.

What you have described were the exact symptoms that bafffeled my GP and finally sent me to a GI DR. I received a possitive biopsy as a result to the endoscopy exam.

Please seek another DR and as you are calling, ask if they have had experience dealing with celiac disease.

Find one that won't laugh at your pain. There are many DR's that will be happy to sort out your problems.

Lisa B

[nettiebeads]

I'm not Spanish and I have celiac disease. I believe most of the medical community thinks it's those with NORTHERN European heritage that have the problem. Like Swedes (me - 50% swedish).

A (good) dr. should never laugh at a patient's desire to see a specialist. I don't understand your dr at all. There is no logic in his thinking - okay, celiac disease is a known autoimmune disorder that can be dx through many ways (blood, biopsy and diet challenge) but where is the proof that all of your symptoms are caused by reading the internet? You went to the internet to look for answers to your symptoms. You didn't say "ooh that looks like a fun symptom - I think I'll have very painful gas and a distended tummy tonight" Forgive my rant.

We believe you. What is your insurance like? Can you go to a GI w/o a referral?

Do you have to stay with this dr? Keep us posted.

[Claire]

Anyways I'm really tired of fighting to get answers....

My GP went on to laugh at me when I requested to see a GI guy and said i've tried everyother avenue why not?

I'm really not being taken serious.

Thanks for listening

<{POST_SNAPBACK}>

I made myself a rule - never, never go back to a doctor that laughs at me. I think this might apply to you also. All that misery is bad enough without having a doctor that might as well be one of the three stooges.

The answer is out there. You just need the right detective to help you find it out. Claire

[Rachel--24]

"You don't have celiac that is mostly found in the spanish your not spanish.

<{POST_SNAPBACK}>

Huh?? That was a really dumb thing for them to say.

Well I am Spanish. Mexican/Spanish/Italian....I always thought it was the Italian in me that got me here. Never heard anything about Spanish.

Anyways...obviously you know by now that you don't have to be Spainsh to have celiac disease.

[bluelotus]

If you ever want to go off on the medical community - I am a great person to talk to. I could go on for hours about the ignorance in general and how most people don't believe that food can affect others so drastically. Let me tell you, if a doctor has said it, I've heard it. And I have never heard of spanish heritage having a prevalence of celiac disease. Interesting. I am scottish, french, and scandinavian......not sure which ethnicity contributed to the celiac disease though.

[Danijela]

THANK-YOU ALL for your advice and support.

My GP just called me and said he was in the process of getting a GI specialist to see me... i'm really hoping to get some help from him.

I am lucky to be living in Canada and have the benefit of OHIP so this isn't costing me anything. If it was i'd be angry about the waste of appiontments and the fact that this seems to be a big joke to the DRs.

The Dr's office still wont tell me which antibodies they screened so hopefully that information will be given to me by the specialist.

I asked my GP if i could get tests run to check for food intolerances and he said that is extremly hard to determine.

If none of this pans out then i'm going to go on the diet to see if I improve. that

But honestly if another DR says this is all in your head your creating your own problems through hyperventilation I DON'T KNOW WHAT I'M GONNA DO...

Ive come to realize that when a DR has no answer or knowledge about the situation their only explanation other than the truth is that it can't possibly exist.

Has anyone ever had colon hydrotherapy?

Thank you

[ravenwoodglass]

I asked my GP if i could get tests run to check for food intolerances and he said that is extremly hard to determine.

If none of this pans out then i'm going to go on the diet to see if I improve.

Has anyone ever had colon hydrotherapy?

Thank you

<{POST_SNAPBACK}>

The best way to detect food intolerances is through an elimination diet. You can ask the GI for a refferral to an allegist if he is unable to guide you through it.

Why not try the diet you have absolutely nothing to loose. Some of us never show up positive on the blood tests but if you are Celiac you will see an improvement in your health VERY quickly.

Colon Hydrotherapy would not be something I would do. It may relieve your symptoms temporarily but they are not something that your body needs and can upset the natural balance of the bacteria in your intestines and contribute to more problems.

[Guest nini]

I have absolutely NO FAITH in medical dr.s anymore... you have nothing to lose by trying the diet. Your symptoms sound a lot like mine before going gluten-free. My GP believed me that something was wrong and ran all kinds of tests but it wasn't until I went to a knowledgeable GI that I was finally dx with Celiac.

[Felidae]

I was sick of being sick and being told that I couldn't have celiac disease because my blood tests were negative and that I couldn't have it because no one in my immediate family has it (that we know of). So I went gluten-free and I have never felt better. Your doctor sounds very unprofessional. I know where I live in Canada it is very hard to find a doctor even if it is a bad one. But I think you need a doctor that will listen to you and send you to specialists. But as others have said going gluten-free won't hurt you.

[Guest Kalynn]

Hey everyone!

I'm begining to think I should just give up and suffer... I've been after a number of DR's for nine months now to find a reason for my

fatigue

dizzyness

balance issues

constipation

extreme thirst

weakness

D

sweating after eating

night sweats

vison disturbances

anxiety

hypoglycemic attacks

throat discomfort

anemia

high cholestoral

shortness of breath

bloating (at times look 9 months pregnant)

gas

weight gain (unable to loose it)

sensitivity to loud noises

I had a Celiac blood screening run... I was told it said "antibodies rule out active celiac disease"

I had been advised by a few members of this board to check into which anitbodies were scanned to make sure they were the correct ones.

When I asked I was told "You don't have celiac that is mostly found in the spanish your not spanish. its all stress. its all in your head. you know people can make themselves sick. your self-medicating. stay off the websites a little information can really make you sick"

Anyways I'm really tired of fighting to get answers....

My GP went on to laugh at me when I requested to see a GI guy and said i've tried everyother avenue why not?

I'm really not being taken serious.

The other night my stomach was so bloated kinda swollen looking my lower stomach felt like it weight 50 pounds just in one spot it was really painful and strange and when i touched it something was sticking out... don't know what that was but it sure was uncomforble.... its the third time its happend in the last 6 months or so......

Thanks for listening

<{POST_SNAPBACK}>

I just happened upon your post. You sound just like me. My docs (gi & pcp) were ready to write everything off to nerves/depression whatever. But, I know my body and when there is something wrong. I insisted on the Celiac panel testing. I have spoken with my husband and we both decided that as soon as I have the blood drawn I am going gluten-free because I have been sick for so long and noone can tell me why.

Hang in there!

[Danijela]

I just happened upon your post.  You sound just like me.  My docs (gi & pcp) were ready to write everything off to nerves/depression whatever.  But, I know my body and when there is something wrong.  I insisted on the Celiac panel testing.  I have spoken with my husband and we both decided that as soon as I have the blood drawn I am going gluten-free because I have been sick for so long and noone can tell me why. 

Hang in there!

<{POST_SNAPBACK}>

Thanks Kalynn

I actually just got a list of the antibodies that were screened. My DRS secretary finally told me, and i found out that the full panel wasn't run...

I think i'm going to ask my GI to order the full panel this time and pray for this to be the answer to my misery!!!

[debmidge]

Danijela

My husband has celiac disease & was midiagnosed 27+ years about. Saw 3-4 gastros and many GP's. Last gastro who diagnosed him told him that nationality that gets celiac disease the most is Irish....my husband is Italian/German/Danish background. Maybe Irish slipped in unbeknownst to him, but he doesn't look Irish, if anything he looks Italian (olive skinned, dark hair & eyes).

Sometimes when doctors don't know something they make it up. The especially like the "it's in your head" diagnosis but that's after the IBS diagnosis.

Some advice: ask for a copy of your test results every time. I keep file folders of our tests over the years and refer to them whenever I have to visit a new doctor or specialist. I take copies and give to new Dr. along with what I call a "Health Resume." That's a short synopsis of conditions I've had, surgeries, tests, medications, etc. I make the new Dr.'s office keep that in their files on me. This way they can never say that they weren't aware of something.

[Guest BellyTimber]

"But honestly if another DR says this is all in your head your creating your own problems through hyperventilation I DON'T KNOW WHAT I'M GONNA DO...

Ive come to realize that when a DR has no answer or knowledge about the situation their only explanation other than the truth is that it can't possibly exist."

I've been at this point - round and round in circles - and you got me thinking about it.

I don't think they've got such tidy minds, it doesn't matter to them that there is a gap in their logic and they are the world's worst communicators as well as decision takers. They might project a "blind spot" about it, but the things they get dogmatic about can change at the drop of a hat.

I see a neurologist next week about my shaking and bad ears but he is no further away in distance than the gastroenterologist I've never been sent to.

We do wait a long time to get what we need out of them, and sometimes don't get it. Hoping things work out for you somehow

[NewConcerned]

I feel the same way about doctors. I have seem about 5 specialists over the course of the summer trying to figure out my problem. After each did their own group of blood tests/MRIs and found nothing wrong, they basically didn't know what to say! From this experience, I have felt like the dr's think I'm crazy and it has been extremely hard these past few months trying to explain to ppl that it's not anxiety or stress, but that something is truly going on in my body. The last specialist I saw (a rheumatoid dr) finally did a celiac sprue blood test and it came back borderline positive- that's where I stand now...seeing the GI next week. My primary dr. even still told me that celiac disease couldn't be the cause of my neurological problems- she ruled it out....but then I did my own research and found out that it's not only GI symtoms. I have never been so anti-dr as I am now. I'm in grad school to become a speech therapist and one thing we have learned is that you really need to listen to the patient prior to giving any of your ideas. Dr's need to learn that we are human beings and that we know best what is going on in our own body- if they'd only listen more, we wouldn't have to go through so many tests to figure things out!

[FaithInScienceToo]

Hi, there -

FIRST - Never, EVER, give up on finding out what is wrong with your health, and how to fix it...

SECOND - A joke for you:

What do you call the doctors who graduated LAST in their class?

(answer appears at end of my message...)

THIRD: People can have negative bloodwork and positive biopsies...

FOURTH: Keep on keepin' on...even if it is not celiac disease, it IS something, and it IS NOT ALL in your head...unless you have mastered full body control....you have SO many symptoms, it cannot ALL be 'in your head'...

FIFTH: Your doctor is a jack ass...sorry, but it's true...

Oh....your answer to the ?, "What do you call doctors who graduated LAST in their med school classes?"

"Doctor." (and, sometimes "jack-ass")...

;-)

With love to you, and with respect for the good docs out there....

Gina

[EvilGut]

Danijela,

Definitely get a detailed list of antibody tests run on you. Let me tell you why. There's a condition closely associated with celiac disease which will almost guarantee that you will test negative. This is because most of the autoantibody tests for celiac disease are of the IgA isotype. A small percentage of celiac disease'ers have IgA deficiency. Guess what that means? False negatives galore.

What's with the Spanish heritage thing? That's bulldunk. celiac disease is more common among those of northern/eastern European heritage.

And the "all in your head nonsense": something like anemia, which you have, cannot possibly be in your head. "All in your head" muttered by a doctor means "I have no clue what's wrong with you." Since medical schools train their students to never use the dreaded, "I don't know", they're forced to adopt the more pleasant and accomodating "it's all in your head, fruitcake." Nice, huh?

[Danijela]

Hey everyone !!!

Thank-you soooo much for all your responses!

they were great you all gave me alot of great advice and even a few laughs in the process.

I appreciate it !

The secretary at my gp office gave me the list of antibodies run over the phone last week this is what she read :

Gliadin antibodies

Gliadin igb - ab

Gliadin iga -ab

iga + igg normal

antibodies rule out active celiac disease

From what ive been told on this site thats not a full panel so i'll be after my GI to order the full panel when I see him in a few weeks.

Hes ordered a barium enema that is scheduled on the 18th.

But anyways thanks again for your feedback and i'll be sure to keep you posted!

thanks

[FaithInScienceToo]

Good to hear your update-

I hope that your doc will run the add'l blood tests for you -

What's the barium enema supposed to rule-out, or in?

Gina

[Danijela]

Good to hear your update-

I hope that your doc will run the add'l blood tests for you -

What's the barium enema supposed to rule-out, or in?

Gina

<{POST_SNAPBACK}>

Hi Gina

The doc said that it would allow him to see the bowel

I don't really know what he expects to do with that

It could because I have a history of that kind of cancer in my family.

BUt i'm definity going to request the blood work that wasn't done be ordered and HOPE THAT IS THE ANSWERS TO ALL MY SYMPTOMS!!!

ttyl

[FaithInScienceToo]

Hi, again, Danijela :-)

(Is that your real name, or only your ID, btw?)

One thing just came to me - have you had tests for thyroid dysfunction, or thyroid autoimmune disease?

Just want to be sure you mention that to your doc, too - because

it can be related to gluten problems also, and also to your list of symptoms -

Anyway - I'm glad that the doc wants to do the barium enema - to make sure you're looking OK 'in there,' but I hope he'll also run ALL potentially-pertinent blood tests, too, since it's simpler, cheaper, and less invasive.

Best wishes, Gina

[Claire]

Hey everyone!

I'm begining to think I should just give up and suffer... I've been after a number of DR's for nine months now to find a reason for my

Anyways I'm really tired of fighting to get answers....

My GP went on to laugh at me when I requested to see a GI guy and said i've tried everyother avenue why not?

I'm really not being taken serious.

The other night my stomach was so bloated kinda swollen looking my lower stomach felt like it weight 50 pounds just in one spot it was really painful and strange and when i touched it something was sticking out... don't know what that was but it sure was uncomforble.... its the third time its happend in the last 6 months or so......

Thanks for listening

<{POST_SNAPBACK}>

Only 9 months. I have been fighting for a diagnosis for years - and years. I know what I don't have, if that is supposed to help. Still working on a definitive diagnosis. Getting closer. Might even get it my lifetime.

Rule #1 - never go back to a doctor who laughs at you. Don't forget that you - or insurance you pay for - is paying him. Remind him if he forgets that.

You need to see a GI specialist and a neurologist. Ask if either have any celiac patients. Also try a Naturopathic doctor. Don't let him sell you a lot of stuff. Ask questions about your health issues and ask for his opinion. Ask him to recommend specialist in related fields. Claire

[tiredofdoctors]

Hi Danijela -- I agree with everything everyone has been saying. Antigliadin antibodies are not NORMAL, but are more common than other antibodies which are specific to celiac -- namely, Anti-endomysial antibodies and Anti-transglutaminase antibodies. Also, small intestine biopsy (a very minimal procedure where they take 4 approx. biopsy specimens) can confirm as well.

I agree with Claire -- I don't go back to doctors who laugh at me. There is a rheumatologist who is, probably within the next two days, receiving all of the "factual" (vs imagined) information from bloodwork and biopsies which proves that he was wrong last year.

Hang in there -- and DON'T give up!

[EvilGut]

[>>I agree with Claire -- I don't go back to doctors who laugh at me. There is a rheumatologist who is, probably within the next two days, receiving all of the "factual" (vs imagined) information from bloodwork and biopsies which proves that he was wrong last year.<<

I've had a terrible time with rheumatologists. They don't listen, they don't care. I guess there are some good ones out there. I just haven't encountered them.

Good on you for not putting up with crap from doctors. Any doctor who laughs at you is not worth your while--or your money. You're the customer, and the customer has the right to decide with whom s/he does business.