Can't Get A Diagnosis! Frustrated!

[nu-to-no-glu]

This is my 1st post, so forgive me if it's long. But, I need some support! I am 98% sure that I have gluten intolerance/celiac disease. I can

[ravenwoodglass]

Posts like yours make me feel like either screaming or crying. They are the reason I am here. I am so glad you have found us, I wish I had before I got so advanced in this disease. I would go ahead and go with enterolab. You have nothing to lose. Also Enterolab can look for antibodies for up to a year after you go gluten free so you can start the diet anytime you want. I am a Seronegative celiac who was close to death by the time I was finally diagnosed. Doctors would look at the blood tests and say 'nope you don't have it' and never even told me what celiac was or to try the diet. The changes for me, as for many of us, were obvious within a short time gluten free. It sounds like they may be for you also. You should also drop dairy from your diet at first and then try adding it back in after you heal.

One more thing you can do if you want a doctor derived diagnosis is to keep eating gluten and demand an endoscopy. Why doctors don't do an endo at the same time as a colonscopy is beyond me but that may show the damage. However there is a risk of a false negative with that test also, for various reasons. So no matter what the results a dietary trial is in order.

Children can be even harder to diagnose than adults but it wouldn't hurt to demand a celiac screening for your son. My son showed many signs of celiac but doctors never thought to test him until I was diagnosed. He did show positive on blood work but unfortunately he was by then almost 20 and it was too late for him to achieve any growth from the diet.

[runningcrazy]

Hi and welcome:)

I dont have much info to share as I am working on a diagnosis as well, I just wanted to tell you a few things..

I went through my pediatrician(im 13) she highly doubted our suspicions of celiac disease. But, she ran the blood test(only 1/2 of the true panel) it was negative and she said that its not celiac(i was gluten free 3 weeks before..she said it wouldnt affect it) so i ate gluten again. I ended up in the ER a couple months later, horrible pains from constipation, the ER doctor wasnt worried, said constipation is painful, and the 6 laxatives i had been on for 2 months(as prescribed by doctor) were probably a factor. I went to a GI doctor, he just made rude remarks to us, was rude, and barely listened. He ran a different panel and it was negative again.

We ordered enterolab one week ago. Hopefully within a week or two i will get my results. I went gluten free last week to get a jumpstart incase i am reacting to gluten. I have seen a huge improvement in my stomach pains, but the bloating is still there(this is most likely from my constipation, were heading out for some prune juice ) today. Perhaps you should order the test( i did the celiac gene and stool panel complete-$369) and go gluten free until you atleast get your results, see if you feel better and if it comes back that you are reaacting to gluten, you have a jumpstart. Be sure to cut out dairy as well, the test i ordered is giving a free casein testing too, so youll want to cut that out too.

Your not crazy to think its the answer, for many people, it is the answer.

I have seen many celiacs on this board who are overweight, super thin isnt the only standard, although I was nearly 5'5 a few months ago and 80 lbs..yikes! Ive gained aout 15 which is good, because it was really unhealthy..

[nu-to-no-glu]

Thank you, both! I am at the point where I am finally ready to give the diet a try and order the Enterolab test (which, I'm sure my insensitive GI will rule as phooey) but I think $400 is worth it, as opossed to finding yet another dr. I tried to ask for an endoscopy, but he said he strongly didn't feel it necessary. I'm sure you all feel the frustration of dr. shopping...this new one even got mad at me for leaving the last one and kept questioning "why didn't you have a follow up with your last dr."???? Ummmm....isn't it my right as a patient to see whoever I feel is giving me the best treatment? I could rant for hours....

[nu-to-no-glu]

I also wanted to ask if all of the tests my dr did would be an indicattion of gluten? I can't remember all of them, but it was definitely a long list of blood tests included a cbc, sed rate, thyroid, phosphate, etc. and a list of stool tests as well. I didn't see the actual results, but the nurse said everythig was fine. If there were something more than "just IBS" would it appear on these tests??? I hope more of you can share with me thanks!

[RESO]

I also wanted to ask if all of the tests my dr did would be an indicattion of gluten? I can't remember all of them, but it was definitely a long list of blood tests included a cbc, sed rate, thyroid, phosphate, etc. and a list of stool tests as well. I didn't see the actual results, but the nurse said everythig was fine. If there were something more than "just IBS" would it appear on these tests??? I hope more of you can share with me thanks!

Whatever tests they did, it sounds like they didn't do the gluten antibody test, so if they didn't do that specific test, sensitivity to gluten would not show up. You have the right as a patient to a copy of all of those test results, ask for them so you can at least see them and perhaps take them to another dr.

My doctor did a full blood panel last August (CBC, white cells, all that stuff including thyroid, liver, kidneys, cholesterol, etc). According to all of the tests, I am the picture of perfect health. They did not explain why I was so tired (tired seems like an understatement, lol) all the time or any of my other symptoms. He thought I might have environmental allergies due to my severe sinusitis. It wasn't until I quit eating gluten a couple months later that my symptoms started going away. This is a dr. I really liked and respected but he didn't catch it. Of course, I don't think I mentioned my digestive symptoms to him, so....

Keep switching doctors until you find one that actually LISTENS to you. It may take several, since most are idiots, in my experience. If a Dr. starts lecturing you about not following up with your previous doctor, or you feel he/she isn't listening to you, get up and walk out. Many celiacs are overweight or even obese before they start the diet. One of my problems was I could not lose weight no matter what I ate or how much I exercised, and when I went gluten free, I lost 10 pounds in less than a month. I am overweight, but nowhere near obese. I think it has to do with whether you have diarrhea or constipation as a symptom. If you have the diarrhea, you can't keep any weight on. If you have the constipation, well, if you're ingesting food and can't poop it out....

Anyway, I hope you feel better soon.

[nu-to-no-glu]

Whatever tests they did, it sounds like they didn't do the gluten antibody test, so if they didn't do that specific test, sensitivity to gluten would not show up. You have the right as a patient to a copy of all of those test results, ask for them so you can at least see them and perhaps take them to another dr.

Thanks, RESO. I did have the celiac panel and antibody test and it was negative. As for your other comment, my main form of elimination is diarrhea, which sort of contradicts what you say about being underweight...hmmm...anyone else have thoughts on this?

[The Fluffy Assassin]

Thanks, RESO. I did have the celiac panel and antibody test and it was negative. As for your other comment, my main form of elimination is diarrhea, which sort of contradicts what you say about being underweight...hmmm...anyone else have thoughts on this?

The latest doctor might well be right about the fructose malabsorption. I seem to have that problem and it seems to have caused the diarrhea I still had a year and a half into gluten freedom. Maybe you should try cutting out sugars first. It's... challenging. You pretty much have to cut out all sweeteners altogether (many artificial sweeteners cause your body to make fructose) and get all your carbohydrates from starches. Starting the gluten-free and no sugar diets at the same time, with a small child in arms, would probably be something beyond challenging. Why not dump the sugar first, and when you're confident with that, try going gluten free? Make sure you're getting enough protein and fats (I didn't when I dropped dairy and sugar practically at the same time, and got to enjoy three weeks of hypoglycemia) and fiber. (By the way, did he test you for fructose malabsorption? I understand it's just a standard hydrogen breath test.)

Good luck, and welcome to the board.

[nu-to-no-glu]

The latest doctor might well be right about the fructose malabsorption. I seem to have that problem and it seems to have caused the diarrhea I still had a year and a half into gluten freedom. Maybe you should try cutting out sugars first. It's... challenging. You pretty much have to cut out all sweeteners altogether (many artificial sweeteners cause your body to make fructose) and get all your carbohydrates from starches. Starting the gluten-free and no sugar diets at the same time, with a small child in arms, would probably be something beyond challenging. Why not dump the sugar first, and when you're confident with that, try going gluten free? Make sure you're getting enough protein and fats (I didn't when I dropped dairy and sugar practically at the same time, and got to enjoy three weeks of hypoglycemia) and fiber. (By the way, did he test you for fructose malabsorption? I understand it's just a standard hydrogen breath test.)

Good luck, and welcome to the board.

Fluffy, thanks for the info and sorry to hear about your restrictions. I have been eliminating/limiting fructose for the past week and 1/2. Not easy, you are right! I have noticed that my pain before a bowel movement is not as intense, but the urgency and frequency still exist I also notice that if i eat something like a piece of bread (been looking for bread with low fructose content) the pain and urgency is pretty quick, but I can't be sure if it's related. I'm definitely proceeding with the drs orders, and think it's so difficult to be patient sometimes when you just want an answer and have been dealing for so long!!! Especially since symptoms seem progressively worse. arggggggh!

Also, I notice my BMs still float and are so so watery and scattered (is that TMI?) Do you know if fructose malabsorption and gluten go hand in hand, or are they seperate conditions? Perhaps I might just be suffering from the fructose?

Thanks, for the advice. I am definitely going to follow the advice of one step at a time. this is all so very overwhelming!

[RESO]

Thanks, RESO. I did have the celiac panel and antibody test and it was negative. As for your other comment, my main form of elimination is diarrhea, which sort of contradicts what you say about being underweight...hmmm...anyone else have thoughts on this?

Maybe not everyone who has the diarrhea is underweight. I know I saw a thread recently on this board where someone was asking if there were any other overweight/obese celiacs. Lots of people responded saying they were overweight or obese. Maybe you could post another thread about diarrhea and overweight with celiac disease or you could ask on that other thread?

Another thing to consider is that there are lots of people on this board who have gotten false negatives from blood tests then were diagnosed with a biopsy. You know what they say, if doctors knew what they were doing, they wouldn't call it practicing medicine...

I hope you find a doctor who is able to help you quickly so you can get some kind of diagnosis and start the gluten-free diet or whatever measures you need to feel better.

Take care,

R

[ravenwoodglass]

Fluffy, thanks for the info and sorry to hear about your restrictions. I have been eliminating/limiting fructose for the past week and 1/2. Not easy, you are right! I have noticed that my pain before a bowel movement is not as intense, but the urgency and frequency still exist I also notice that if i eat something like a piece of bread (been looking for bread with low fructose content) the pain and urgency is pretty quick, but I can't be sure if it's related. I'm definitely proceeding with the drs orders, and think it's so difficult to be patient sometimes when you just want an answer and have been dealing for so long!!! Especially since symptoms seem progressively worse. arggggggh!

Also, I notice my BMs still float and are so so watery and scattered (is that TMI?) Do you know if fructose malabsorption and gluten go hand in hand, or are they seperate conditions? Perhaps I might just be suffering from the fructose?

Thanks, for the advice. I am definitely going to follow the advice of one step at a time. this is all so very overwhelming!

If you BM's are floating and watery that is a sign that you are not absorbing fats, common with celiac. I do have to disagree with the poster who told you that you should eliminate fructose first and then gluten. IMHO that is backwards. Concentrate on the gluten and limit fructose in the form of high fructose corn syrup if you want but I think you will get the most relief from eliminating the gluten.

[The Fluffy Assassin]

Fluffy, thanks for the info and sorry to hear about your restrictions. I have been eliminating/limiting fructose for the past week and 1/2. Not easy, you are right! I have noticed that my pain before a bowel movement is not as intense, but the urgency and frequency still exist I also notice that if i eat something like a piece of bread (been looking for bread with low fructose content) the pain and urgency is pretty quick, but I can't be sure if it's related. I'm definitely proceeding with the drs orders, and think it's so difficult to be patient sometimes when you just want an answer and have been dealing for so long!!! Especially since symptoms seem progressively worse. arggggggh!

Also, I notice my BMs still float and are so so watery and scattered (is that TMI?) Do you know if fructose malabsorption and gluten go hand in hand, or are they seperate conditions? Perhaps I might just be suffering from the fructose?

Thanks, for the advice. I am definitely going to follow the advice of one step at a time. this is all so very overwhelming!

My bread substitute since going gluten-free has been soft corn tortillas. They have no sugar, but they also have no fiber. (Gluten free breakfast cereals tend to have this problem, too. Wheee!) One solution is to eat a lot of beans. Very high fiber, very low sugar. This might be a solution to your watery poo; when I started eating masses of vegetables (also more beans), mine dried up a lot.

Remember that regular sugar is just fructose and glucose. The fructose malabsorption sites suggest that it's easier for a fructose malabsorber to digest than is straight fructose, but it still adds to your fructose load. So cutting out all sugars might still be a good idea. The good news is that fructose malabsorption isn't an all or nothing thing like gluten; you just have to find your level.

Ravenwoodglass may be right that cutting out gluten first is a good idea. The fact that you're still having trouble even while cutting down fructose rather supports this thought. (Also, wheat has a lot of fructose in it, so cutting out wheat is common sense just from the fructose angle.)

Again, good luck.

[ravenwoodglass]

I just wanted to add that I checked my bread to be absolutely sure and the Kinnickinnick White sandwich and the Italian and the Pizza Shells are all fructose free. They are actually a pretty good bread, the only brand I will eat with just butter. I use corn tortillas also often but nothing beats a PB&J some days.

[nu-to-no-glu]

You guys are all so amazing and I feel fortunate to have found these forums. I'm definitely going to call tomorrow and request copies of all the tests and ask why the hydrogen breathe test wasn't performed if he suspects fructose malabsorption. I am also going to tell them that I am going to start a gluten free diet.

It's been so helpful to scour this site and read about so many others with the same problems of achieving diagnosis. Do drs think we want to be diagnosed with a disease? Why would someone be so persistent if they knew they were feeling fine? I think we are a lot more in tune with our bodies than drs give us credit for, for sure.

I think drs are annoyed by informed patients, but you all have given me a lot of information and knowledge to present. Thank you! (And I am off to the store to look for that bread, Raven)

[nu-to-no-glu]

I also thought this might make you smile...I was thinking of all the different things drs have told me to try and just remembered that when I was like 12-13, one specialist told my mom to eliminate ice from my diet. Yes, ice. Ha! Not exactly sure the medical reasoning behind it (frozen water malabsorption?), but for like 3 months I wasn't allowed to have any ice in my drinks....oh, how sad that was. Of all the things to eliminate. Modern medicine, gotta love it! Hahahahha...so crazy!

[Lynayah]

Whatever tests they did, it sounds like they didn't do the gluten antibody test, so if they didn't do that specific test, sensitivity to gluten would not show up. You have the right as a patient to a copy of all of those test results, ask for them so you can at least see them and perhaps take them to another dr.

My doctor did a full blood panel last August (CBC, white cells, all that stuff including thyroid, liver, kidneys, cholesterol, etc). According to all of the tests, I am the picture of perfect health. They did not explain why I was so tired (tired seems like an understatement, lol) all the time or any of my other symptoms. He thought I might have environmental allergies due to my severe sinusitis. It wasn't until I quit eating gluten a couple months later that my symptoms started going away. This is a dr. I really liked and respected but he didn't catch it. Of course, I don't think I mentioned my digestive symptoms to him, so....

Keep switching doctors until you find one that actually LISTENS to you. It may take several, since most are idiots, in my experience. If a Dr. starts lecturing you about not following up with your previous doctor, or you feel he/she isn't listening to you, get up and walk out. Many celiacs are overweight or even obese before they start the diet. One of my problems was I could not lose weight no matter what I ate or how much I exercised, and when I went gluten free, I lost 10 pounds in less than a month. I am overweight, but nowhere near obese. I think it has to do with whether you have diarrhea or constipation as a symptom. If you have the diarrhea, you can't keep any weight on. If you have the constipation, well, if you're ingesting food and can't poop it out....

Anyway, I hope you feel better soon.

In my case, I have a horrible time losing weight when I eat gluten, and I have diarrhea as well as bowel incontenence.

Just want to say thank you for all the posts here. I am going for my second opinion tests this week and I am actually living in fear of the tests coming back negative. I have horrible bowel incontenence and loose stools shortly after eating gluten . . . but no symptoms when I go gluten free. Gee, whadayathink? Also malabsorbtion issues last year.

Dear Lord, please help all of us who are struggling to find the answers we need.

In the meantime, thank you for this forum!

Love to all here,

Lynayah

[ravenwoodglass]

In my case, I have a horrible time losing weight when I get gluten, and I have diarrhea as well as bowel incontenence.

Just want to say thank you for all the posts here. I am going for my second opinion tests this week and I am actually living in fear of the tests coming back negative. I have horrible bowel incontenence and loose stools shortly after eating gluten . . . but no symptoms when I go gluten free. Gee, whadayathink? Also malabsorbtion issues last year.

Dear Lord, please help all of us who are struggling to find the answers we need.

In the meantime, thank you for this forum!

Love to all here,

Lynayah

No matter what the test results it sounds like your body has give you the answer. I would go back to the diet the day the tests are done and not even wait on the results. False negatives are not uncommon and some times the body tells us what the tests cannot.

[Lynayah]

No matter what the test results it sounds like your body has give you the answer. I would go back to the diet the day the tests are done and not even wait on the results. False negatives are not uncommon and some times the body tells us what the tests cannot.

Ravenwoodglass:

Wonderful words of wisdom, as always, from you. You -- and so many others here -- are such a blessing to this forum. It makes me think that all your years of suffering were not completely in vain -- not sure if that counts as a silver lining or not, but for those you've gone on to help from all you learned in your hardships, it certainly is one.

I really don't know how these tests will play out -- I'm assuming they will do blood work first and then decide whether or not to biopsy after the results come in. I can't help but wonder how long I'll have to wait until all the tests are completed. I hope not long. I have weird blood so it might take an extra test or two. For example, I've had a low white cell count all my life and no one has ever been able to explain why -- could Celiac have something do to with this as well, I wonder????

I agree with you about not waiting for the final results before switching back to good eats. I KNOW I need to be gluten-free and am counting the days until I am back to eating healthy again.

Ha! I guess it must sound a little crazy that someone could actually look forward to giving up gluten completely, but I am so there.

[curiousgeorge]

That is interesting because craving ice is a iron deficiency symptom. VERY moronic that it got twisted around. NOW, I can see a dentist saying stay away form ice.

[ang1e0251]

I'm glad you are sending for your test results. What one dr interprets as negative or low might be positive for certain individuals. Post your results here. Did you know that if you are IgA deficiant your blood will never test positive? Blood isn't the only proof.

I think you are smart to get the Enterolab test. It can give you another piece of the puzzle you need to understand your body. Keeps notes on your dietary progress too. I know it will be hard with a baby but dr's respond well to written notes. If you have a positve dietary response as well as earmarks from Enterolab, that should tell a dr what they need to know.

And what if your dr still won't listen? You will know what your body is telling you and you don't need a dr's permission to follow a diet that is healthful for you. For your child, these proofs should tell a good pediatrician to look for celiac disease. It is hard to dx a child but for a good dr the dietary response and growth indicators should help tell the story.

Keep us posted on your progress. I think you are on the right track for you and your son.

[no-more-muffins]

There is a support board for people with microscopic colitis (which main symptom is diarrhea). Your post made me think you may have some microscopic colitis and/or celiac. (MC is usually diagnosed through colonoscopy.) Here is the website for that forum. They are wonderful over there. Many people with MC have gluten intolerances as well as other food intolerances. It might be a worthwhile thing to get your soy and casein checked as well. Enterolab tests for those proteins as well as gluten.

Open Original Shared Link

[nu-to-no-glu]

Thanks, guys! I felt really good today after hearing from all of you and reading all of the stories on this site. My usual 4 trips to the bathroom after lunch didn't even get me down! AND...I called my drs office geared with all my new knowledge and he said that he was very supportive in starting a gluten free diet and was going to recommend it as a next step (ummm...well, let's get too it). He said that he is not performing many endoscopies to diagnose celiac bc he finds false results, but more improvement from the diet as a 1st step. HOORAY! (I didn't tell him that I was gonna give it a go with or without him).

So now, I'm torn as to whether I should get the Enterolab test or just wait and see how I feel. Its quite a bit of moolah. I think you are right about having my results for my son, but maybe I can see if his pediatrician will run a blood test first?

Now, I'm loading up on info on starting gluten-free and made the mistake of clicking the "list to avoid" link...how overwhelming!

[ang1e0251]

You can have the Enterolab test at any time. You don't have to be eating gluten for it.

[neylanagrace]

I just registered today. Hello everyone. I am getting tested for Celiacs and Crohn's soon. This is all pretty scary. I've been reading some posts and felt instantly sad for everyone. I'm 41 yrs old. No one in the family with celiacs ( that we know of). I was just wondering....Should my allergist or gastroenterologist test for this? I am so confused with everything. I went into the ER for throwing up for 6 wks from a sinus infection...3 days later...I might have celiacs or crohn's; have a cyst on my ovary; found spots on my lungs, and I am now on a very special gluten-free diet until I am officially diagnosed. Very overwhelming. Oh yea... I am vit b12 deficient. OK I am done pouting now. I will read more of your guy's stuff. Maybe I can get a handle on this. After a nap.....Thanks for listening.

[Nancym]

Yuck! Sorry you're having such issues with your doctors. Sometimes people find it best to work outside the system when it just isn't working for them. I went ahead and self-diagnosed. I figured, what the hell can it hurt to try the diet and see if it works? So that's what I did. It worked. I got Enterolab testing done for confirmation and curiosity and to help stiffen my resolve to stick with the diet. I'm about 4 years into this and having no issues with my resolve to stick to the diet.

So anyway, I would encourage you to disregard the doctors and just try the diet and see what happens. Sometimes we know better than doctors.