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I Feel Like I'm On Mystery Diagnosis

fripp017

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fripp017 Apprentice
fripp017
Posted

So, I have been suffering from mild to moderate abdominal pain for about 4 months now. I have seen at least 10 doctors ranging from ER (for some of the more moderate pains), Ob/GYN, Primary doctor, and now a Gastroentenologist.

Has anyone else had a doctor not believe that they were having pain?

I remember one appointment where I walked in, the doctor looked over my test results (just basic blood tests and urine sample), feel around my stomach and tell me that there was nothing wrong. She gave me pain meds and booted me out. I have two children and pain meds make me VERY drowsy so I was quite peeved. Finally, my primary doctor made me do a stool sample (ugh) and some of the antibodies for Celiac were present.

I have abdominal pain, fatigue, irritibility, and nightmares/unable to sleep. I had the endoscopy done and the doctor told me the results were "inconclusive." Now I have to do the blood test (and I have been on and off the gluten free diet trying to feel better - and it does make me feel SO much better).

Isn't the blood test supposed to be done first?

I am so tired of being ignored. Has this happened to anyone else??????

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Tallforagirl Rookie
Tallforagirl
Posted
Isn't the blood test supposed to be done first?

I am so tired of being ignored. Has this happened to anyone else??????

I think you'll find there are plenty of people on this forum who have had a frustrating time with their doctor trying to figure out what's wrong.

At least you are finally getting the blood test, so hopefully that will confirm the diagnosis for you.

I'm suprised they did a stool stample rather than the blood test first off. I know some people opt for stool testing through a company called Enterolab, but I believe those people have done it privately, without going through their doctor. The usual routine is blood tests, then endoscopy/biopsy.

Make sure they do the full Celiac panel of blood tests, should at least include anti-tissue transglutaminase IGA, and anti gliadin IGA and IGG, sometime they'll also do endomysial antibody test as well (EMA).

The EMA is the most specific test for celiac disease, but the anti-tissue transglutaminase test is more sensitive.

Lisa Mentor
Lisa
Posted

Hello and Welcome:

It doesn't matter what order you test. What matters is that you continue to eat gluten for the optimum accuracy in testing. BTW, a stool test cannot indicate Celiac.

This is the panel to request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Keep yelling until you get an answer.

Tallforagirl Rookie
Tallforagirl
Posted
... BTW, a stool test cannot indicate Celiac.

Oh, that's something I didn't realise. What is the stool test from Enterolab that people keep referring to?

And, thanks, I forgot to list the total IGA test, and that's important to validate the other IGA-based tests.

fripp017 Apprentice
fripp017
Posted
  • Author

BTW, a stool test cannot indicate Celiac.

My bad, lol. The doctor gave me a printout of my results and they are kind of hard to read. The doctor found that my Gliadin IGG (from a blood sample) was 20 and it's supposed to be less than 11.

rinne Apprentice
rinne
Posted

Sure, it has happened to lots of us. :)

Here's my theory, what we call disease is damage, when we are first ill we don't have damage but we do have distress, we go for help, the tests look for damage, no damage = no disease, and then we are given medications which suppress our symptoms but do not stop the damage being done. Once we have enough damage, that damage can be classified as celiac, diabetes, arthritis, hashimoto.......according to the tests.

If you have some time read the signatures of some of the posters on this board, you will see diagnoses for years before getting a celiac diagnosis and with adherence to the gluten free diet many see improvement in all the conditions they contracted prior to celiac.

If you feel better on a gluten free diet it is your choice regardless of test results, I wish you well. :)

ravenwoodglass Mentor
ravenwoodglass
Posted
What is the stool test from Enterolab that people keep referring to?

The stool test is a test to look for the antibodies same as the blood test. The difference is they look for them in the stool. Enterolab can not diagnose celiac but they can tell a person if they are making antibodies to the suspect item. They also can test for antibodies to casien, soy and egg and you can also get genetic testing done through them. Although they do not diagnose they can provide a helpful information to add to other indications or testing.

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curiousgeorge Rookie
curiousgeorge
Posted

I went to my family doc a year ago in jan. I told him I was exhausted and felt HORRID and was sleeping every afternoon for 2 hours. He did thryoid tests and said I can't give you more thryoid drugs your ferritin is low but otherwise your fine then offered me antideprssants. I could not believe that this doc who I had this long relationship with didn't believe I was feeling awful and passed me off as depressed. I was SO mad I went to see someone else. He took one look at me and said, you need to be tested for celiac.

fripp017 Apprentice
fripp017
Posted
  • Author
If you have some time read the signatures of some of the posters on this board, you will see diagnoses for years before getting a celiac diagnosis and with adherence to the gluten free diet many see improvement in all the conditions they contracted prior to celiac.

I have read all of them so far. It's actually very depressing. I have done my research online and apparently Celiac is on the top ten list for most commonly misdiagnosed conditions. It's just frustrating to tell a professional that "something" is not right and they don't believe you.

I want the diagnosis so I can test my children for it. If I am not diagnosed then my insurance won't cover the testing for them. It's just hard to wait because I take care of my two children by myself most of the time. My husband is in the Navy and he is constantly gone. He has noticed a difference and even told me, "I want my wife back." I keep telling the doctor I NEED to get better because the symptoms are starting to mess up my life.

SantaDude Newbie
SantaDude
Posted
So, I have been suffering from mild to moderate abdominal pain for about 4 months now. I have seen at least 10 doctors ranging from ER (for some of the more moderate pains), Ob/GYN, Primary doctor, and now a Gastroentenologist.

Has anyone else had a doctor not believe that they were having pain?

I remember one appointment where I walked in, the doctor looked over my test results (just basic blood tests and urine sample), feel around my stomach and tell me that there was nothing wrong. She gave me pain meds and booted me out. I have two children and pain meds make me VERY drowsy so I was quite peeved. Finally, my primary doctor made me do a stool sample (ugh) and some of the antibodies for Celiac were present.

I have abdominal pain, fatigue, irritibility, and nightmares/unable to sleep. I had the endoscopy done and the doctor told me the results were "inconclusive." Now I have to do the blood test (and I have been on and off the gluten free diet trying to feel better - and it does make me feel SO much better).

Isn't the blood test supposed to be done first?

I am so tired of being ignored. Has this happened to anyone else??????

SantaDude Newbie
SantaDude
Posted

"I keep telling the doctor I NEED to get better because the symptoms are starting to mess up my life."

Wow, I say that every time I go to the doctor. We put too much faith and pressure on doctors. They cannot diagnose everything and they don't have the TIME! I have been in clinics that give you ten minutes or 15 minutes to actually see the doctor. When they leave, they don't have the time or mental energy to research every single cae they saw that day. They have a much easier time ordering tests. The tests need to be interpreted. There is so much room for mistakes and it takes so long, I think many of them just hope you'll get better on your own or go away.

So I defend doctors, but I remember they are humans. The health care in the U.S. is set up for quick obvious things. Broken limbs are so much easier than a mystery illness! I have had the possibility of Krones disease thrown at me, possible Lupus, Chronic Fatigue, etc. None of the tests were conclusive. That does not mean I don't have them, it means there were not enough indicators for a conclusive diagnosis. I have tried anti depressants, thyroid meds, and the doctors are saying, here, try this and let me know. Well, that means they are guessing too. Better guesses and a lot more schooling than I wanted, but still a guess.

Naturopaths are supposed to be more in tune with things like celiac, but I have not had that experience. I had an acupunturist first suggest it to me.

fripp017 Apprentice
fripp017
Posted
  • Author
"I keep telling the doctor I NEED to get better because the symptoms are starting to mess up my life."

Wow, I say that every time I go to the doctor. We put too much faith and pressure on doctors. They cannot diagnose everything and they don't have the TIME!

So I defend doctors, but I remember they are humans. The health care in the U.S. is set up for quick obvious things. Broken limbs are so much easier than a mystery illness!

I agree that doctors are human and make mistakes (and cover themselves so they can't be charged for mistakes). Maybe, they could take alittle time to act more human. I feel like a pay check rather than a patient. I don't know if I have just had bad luck with doctors. I just think it is, well - as childish as it may be, unfair. I just want to get better and know what is wrong. I know many people suffer years without knowing, but I know something is wrong and I am being pushed away because it isn't serious enough.

mushroom Proficient
mushroom
Posted

Yeah, optimum wellness is definitely not their goal for us. They seem to want us to have something major, something tragic that they can really get their teeth into :ph34r: Besides, it's a lot easier to diagnose!

mkp Newbie
mkp
Posted

Hi,

I don't know if anyone specifically addressed the blood test for celiac, but if you have been on a gluten free diet, the blood test will not detect celiac (from what I understand). I'm not an expert, but from what I have been reading through different posts, it is VERY important to have been eating gluten for quite a white (I think three months at least) before the celiac blood test or it will be negative.

I am sorry for your struggle to be diagnosed! I feel like I'm on mystery diagnosis as well. I had a negative blood test, but because of the multiple problems and auto-immune things I have been dealing with, I am having the endoscope done on the 24th of this month, then will be going gluten free regardless of the outcome to see if I feel any better.

The best thing I ever did for myself was walk out of my old general practitioners office and never go back. Eventually you will find a doctor that will listen to you or send you to someone else that knows what to do!

Good luck and keep reading on the site, I have found the information here very valuable!

Kristen

So, I have been suffering from mild to moderate abdominal pain for about 4 months now. I have seen at least 10 doctors ranging from ER (for some of the more moderate pains), Ob/GYN, Primary doctor, and now a Gastroentenologist.

Has anyone else had a doctor not believe that they were having pain?

I remember one appointment where I walked in, the doctor looked over my test results (just basic blood tests and urine sample), feel around my stomach and tell me that there was nothing wrong. She gave me pain meds and booted me out. I have two children and pain meds make me VERY drowsy so I was quite peeved. Finally, my primary doctor made me do a stool sample (ugh) and some of the antibodies for Celiac were present.

I have abdominal pain, fatigue, irritibility, and nightmares/unable to sleep. I had the endoscopy done and the doctor told me the results were "inconclusive." Now I have to do the blood test (and I have been on and off the gluten free diet trying to feel better - and it does make me feel SO much better).

Isn't the blood test supposed to be done first?

I am so tired of being ignored. Has this happened to anyone else??????

fripp017 Apprentice
fripp017
Posted
  • Author
The best thing I ever did for myself was walk out of my old general practitioners office and never go back. Eventually you will find a doctor that will listen to you or send you to someone else that knows what to do!

Good luck and keep reading on the site, I have found the information here very valuable!

Kristen

Thank you Kristen. I have considered it. And, after this last blood test today, I may even ask for a second opinion. I actually believe that 20 month old daughter may be showing symptoms and I would hate for her to have to go through this so young. If I am not confirmed, then we would have to start all over again with her.

With the blood tests, I am not sure about "the rules." But, I have definetly been "craming" for my test by eating gluten filled food all day, everyday. I don't know if it works but I hope so!!

Thanks to everyone for their posts and replys. I truely appreciate it. I hope everyone continues to stay strong and positive!

blc40 Newbie
blc40
Posted
So, I have been suffering from mild to moderate abdominal pain for about 4 months now. I have seen at least 10 doctors ranging from ER (for some of the more moderate pains), Ob/GYN, Primary doctor, and now a Gastroentenologist.

Has anyone else had a doctor not believe that they were having pain?

I remember one appointment where I walked in, the doctor looked over my test results (just basic blood tests and urine sample), feel around my stomach and tell me that there was nothing wrong. She gave me pain meds and booted me out. I have two children and pain meds make me VERY drowsy so I was quite peeved. Finally, my primary doctor made me do a stool sample (ugh) and some of the antibodies for Celiac were present.

I have abdominal pain, fatigue, irritibility, and nightmares/unable to sleep. I had the endoscopy done and the doctor told me the results were "inconclusive." Now I have to do the blood test (and I have been on and off the gluten free diet trying to feel better - and it does make me feel SO much better).

Isn't the blood test supposed to be done first?

I am so tired of being ignored. Has this happened to anyone else??????

I completely know what you are going through , i have been going through it for a month ! my General Practicioner blew my forst visit ofr stomach pain off as "shingles " did a CBC and kidney ultrasound and when i came back in a week with no "blister outbreak " and still stomach pain he said i had a "virus " and it would go away on its own as my blood work was "impeccable". i returned the next week still in worse pain , not sleeping , anxiety attacks, joint pain and saw a NP who said it might be "viral" or a "wheat problem " i demanded she refer me to a Gi and she sent me for ultrasound of pancreas, liver and abdomen ( which i told her my GYNO had already done the abdomen in late december ) she did another CBC and did make a referral . cbc was again ok and all ultrasounds . Gi also said it could be Celiac and started his testing , CT scan came back fine except for Diverticulosis and endoscope biopsy was negative for celiac , after biospody i went gluten free to see for myslef anf i was mazed how much better i felt ! wednesday i go for colonoscopy ! then my follow up viste where i may ask for the blood work and/or stool test .

so yes i know what u r going through..............infact my husand has said pretty soon you will be on mystery diagnososi !

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I want the diagnosis so I can test my children for it. If I am not diagnosed then my insurance won't cover the testing for them.

You need to be aware that insurance companies can also use a diagnosis of celiac to deny you coverage, especially if you ever have to switch jobs, insurance companies, etc. (they claim you have a pre-existing condition and then they either deny you coverage or raise your rates). I have read posts on this board from a few years ago where both health insurance and life insurance companies were doing thing.

IMHO, the best test is dietary response. If you have symptoms that don't resolve on the gluten-free diet, you can always look further.

fripp017 Apprentice
fripp017
Posted
  • Author

I regret to inform everyone that Mystery Diagnosis is "to be continued"

I went into for my blood test today, after going off the gluten-free diet again and suffering. It turns out the head gastronentenologist of this group wanted to draw blood for the bacteria that causes ulcers (h. ply-something or other). The person at the lab told me she wasn't even supposed to tell me what the blood test was for. Needless to say, I have really bad luck with doctors, I am growing impatient, and I went home ready to give up.

Should I keep trying? She I challenge the doctor? "Excuse me doctor, I don't have heartburn or grainy poo - it feels like the corner of a table is constantly jabbing into my abdomen. Sometimes, it feels like I am running into the table at full speed. Does that sound like ulcers?"

The only reason I consider even calling my doctor back is for my children.

*See you next time on Mystery Diagnosis*

P.S. This whole reply was done with angry sarcasim due to the frustrating news I heard today. Sorry if I offended anyone.

ravenwoodglass Mentor
ravenwoodglass
Posted
I regret to inform everyone that Mystery Diagnosis is "to be continued"

I went into for my blood test today, after going off the gluten-free diet again and suffering. It turns out the head gastronentenologist of this group wanted to draw blood for the bacteria that causes ulcers (h. ply-something or other). The person at the lab told me she wasn't even supposed to tell me what the blood test was for. Needless to say, I have really bad luck with doctors, I am growing impatient, and I went home ready to give up.

Should I keep trying? She I challenge the doctor? "Excuse me doctor, I don't have heartburn or grainy poo - it feels like the corner of a table is constantly jabbing into my abdomen. Sometimes, it feels like I am running into the table at full speed. Does that sound like ulcers?"

The only reason I consider even calling my doctor back is for my children.

*See you next time on Mystery Diagnosis*

P.S. This whole reply was done with angry sarcasim due to the frustrating news I heard today. Sorry if I offended anyone.

You have the right to be angry at this doctor and I doubt you have offended anyone. This is usually a safe place to vent as most of us have been through the same hoops.

So if I read this right the doctor didn't even do a draw for celiac tests? Although I did notice you stated you already had a postive test, the IGG. Did they do an endo after seeing these blood results? If they did what were the results and did they do at least 5 biopsies of different areas? I really don't like the fact that the nurse was not supposed to tell you what the test was for. I would not stand for that and if you go back to this doctor I would tell him in no uncertain terms that I wanted full disclosure of what he is testing you for and not testing you for. I would also go in and ask for complete copies of all labs and procedures and their results. You have a legal right to them. I am assuming you are here in the US.

fripp017 Apprentice
fripp017
Posted
  • Author
So if I read this right the doctor didn't even do a draw for celiac tests? Although I did notice you stated you already had a postive test, the IGG. Did they do an endo after seeing these blood results? If they did what were the results and did they do at least 5 biopsies of different areas?

You have a legal right to them. I am assuming you are here in the US.

My PCP gave me copies of my labs to take to the GI specialist. I looked it over and I was postive for IGG and equivocal IGA. I just had my endo on the 6th. My doctor didn't tell me much. He said everything looked "fine." When I called him for the results, which took five calls to the office, he told me the biospy was "inconclusive." I have read that sometimes you have to go into the lower part of the small intestine to get more accurate biospies. I don't know. I figured if my tests were showing elevated IGG and IGA, then he should at least be looking at gluten intolerance and looking to rule out Celiac. Instead, he seems to be trying to rule out all the "common" stuff.

My plan is to wait for the blood results (I am assume that it is going to be negative because I am certain I have had this test done already) and see what the doctor does next. If he tries to focus on some other "common" illness, I am probably going to request a copy of all my tests and find a new specialist.

Thank you for your support. I appreciate all the support the members give me. It is probably the only thing that keeps me fighting.

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