Need some help with symptoms

[EBLOOM]

Hello! I am new here, but I have a rather lengthy story and was looking to receive some feedback as to whether or not I am in the right place. Basically, two years ago my weight began to plummet despite consistent (albeit low) calorie intake and exercise routine that I had been stable at for several years. I am a 25 year old female. Diet was the same, exercise was the same, but I dropped from my already slightly low 125lbs. (at 5'9") maintenance weight to 90lbs. in five months!  By greatly increasing calories, I have managed to bring it up to 107, but for about a year now I cannot seem to get any higher than that. I get blood work done every three months because (despite high calorie diet and daily multivitamin and fish oil) I have elevated liver enzymes (ALT and AST), low RBC and WBC, low thyroid hormones T3 and T4, low blood pressure, low heart rate, and hypocholesterolemia (my HDL has fallen from 72 to 48, and LDL from 55 to 45). I have been tossed about to dozens of specialists and undergone quite a few tests, but nothing pans out.

Last October, I was referred to a dietician who suggested gluten intolerance, but nothing progressed from that at the time. Today, I went to see the P.A. at my doctor's office and asked for a celiac panel if only to rule it out. I was unexpectedly met with a flat-out refusal and ten minute tirade that "anyone can graduate from the google school of medicine" and "it would be a waste of resources to order the test."

I made another appointment with a different practitioner at the same office for next week hoping that he might heed my request, but I need to know if this is worth pursuing. I am just looking to get some honest feedback as to whether anyone has experienced these symptoms and if they are indicative of celiac disease as my research and the dietician's suggestion led me to believe. Thank you in advance!

 

[GFinDC]

Hi EBloom,

Well, there has to  be a reason you are struggling to maintain your weight.  Celiac could explain that as it interferes with absorption of nutrients.

Your cholesterol being low is similar to mine when I was undiagnosed.  Celiac damage makes it hard to absorb fats so cholesterol numbers go down.

Liver enzymes being elevated is also associated with celiac damage.

Plenty of people with celiac have thyroid problems so that kind of ties in also.

If you can find a local celiac support group they might be able to recommend a better doctor for you.

The thing is, celiac disease can damage any part of the body, and the nutritional deficiencies that go along with celiac are also a body wide problem.

Many people with celiac don't have gut / digestion symptoms at all.  But they may have other symptoms like joint pain, skin rashes, trouble walking, thyroid problems, gall bladder problems, etc, etc.

Welcome to the forum!    

[EBLOOM]

Thank you so much! I was really surprised by the response that I received from my practitioner, but I will look into it a bit further. I am hoping to get the test if only to rule it out since nothing else has yet come up as the cause.

[Arasmas]

GFinDC, I'm sorry your doctor is a... jerk.  I hate the attitude from doctors that just because someone didn't go to medical school that they must be an idiot who can't read and do their own research.  Your symptoms, particularly the inability to maintain your weight, sound like they could be explained by Celiac Disease.  The blood test for Celiac is a simple diagnostic test that is worth pursuing, even if to just rule it out.  I don't understand why doctors are so resistant when celiac disease is a fairly common disease. 

Reading your post made me angry because this is exactly what happened to me.  After I got really sick and started losing weight uncontrollably, I went to the doctor.  After they diagnosed me with GERD (really?) and then depression (REALLY?), I started doing my own research.  I requested the Celiac panel at my next appointment and was basically laughed out of the office and told to "stay off the internet."  After 6 months of testing my thyroid, digestive enzymes, blood sugar and discovering I was severely malnourished and anemic, I went back to the same office but saw a really nice nurse practitioner.  After reviewing my chart and history she recommended the Celiac panel... and what do you know, it came back positive.  By this point I was so sick and weak I was certain that I was dying of cancer or something.  The Celiac panel cost me $125 out of pocket (I have no insurance) and had they just let me get the test in the first place I never would have gotten that sick. 

If I've learned anything in the last year it's that you have to listen to your body and take charge of your own health.  Celiac Disease attacks your entire body and can cause a lot of problems outside of the digestive system.  From what I've experienced most doctors aren't particularly interested in diagnosing or helping to manage celiac disease, maybe because there's no pill or procedure to treat it.  If your doctors are unwilling to even run a test to rule out something that is a reasonably possibility, find a new doctor.  Dr. Google has helped me more in the last year than any M.d. I've seen and most people with Celiac Disease know more about the disease than their doctors do.  I hope you find some answers.  Good luck.   

[GFinDC]

10 hours ago, EBLOOM said:

Thank you so much! I was really surprised by the response that I received from my practitioner, but I will look into it a bit further. I am hoping to get the test if only to rule it out since nothing else has yet come up as the cause.

There have been a lot of people post over the years about doctors refusing to test them or their children.  So you have lots of company there.  If you try a google search for "celiac support group in xxx" wit xxx being your city/area you may find some.  There is also a doctors subsection of the forum where you might find a doctor.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

[cyclinglady]

Great advice from all, but I would like to add....document.   There is nothing like the power of the written word.  A nice letter expressing your concerns and requests can go a long way.  A verbal request can easily be dismissed and not added to your patient file.  I use our patient portal (email) and have sent certified letters in the past.  It is your right to advocate for your health.  

I wish you well!  

[EBLOOM]

Thanks again to everyone! I had suggested a malabsorption issue in the past and been dismissed, so I had gone into this appointment having spent a week compiling research and listing all the symptoms that I felt supported the test. Cyclinglady, I had actually gone in with a full list, but the P.A. refused even to look at it. She told me that if I were Celiac, I would have had tremendous gastrointestinal issues all of my life and would have been diagnosed as a child. My understanding was that, as an autoimmune disorder, Celiac's can be triggered at any age- is this correct?

I very much appreciate the feedback, as getting the test really made sense to me, but she made me begin to worry that I was approaching the issue with my own confirmation bias. I will keep the appointment for a second shot at convincing them next week, but may look into another route depending on that outcome- fingers crossed! I will keep you posted.

[squirmingitch]

If you can get them to look at these:

Open Original Shared Link

Quoted in part:

Coeliac disease can develop and be diagnosed at any age. It may develop after weaning onto cereals that contain gluten, in old age or any time in between. Coeliac disease is most frequently diagnosed in people aged 40-60 years old. Delayed diagnosis is common and our research shows the average time it takes to be diagnosed is 13 years. 

And:

Coeliac disease is known as a 'multi-system' disorder - symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity. 

 

And this one:

Open Original Shared Link

 

 

[cyclinglady]

I went to a GI for a routine colonoscopy (Yep, hit the big 5-0).  I had anemia my entire life (for as long as it has been recorded).    I also have a genetic genetic anemia that was masking iron-deficiency anemia and I was going through menopause.  I had NO tummy issues as long as I avoided dairy and eggs.  But my savvy GI insisted I had celiac, actually documented that I did have intestinal issues (sadly for insurance reasons) and guess what?  I had moderate to severe intestinal damage.  

[Fundog]

11 minutes ago, EBLOOM said:

I had actually gone in with a full list, but the P.A. refused even to look at it. She told me that if I were Celiac, I would have had tremendous gastrointestinal issues all of my life and would have been diagnosed as a child.

#sigh#  When will doctors learn that humans very rarely present like the cases in their textbooks?  And why should we have to do all of our own research and practically pull their teeth out to get them to listen to us and order the right tests?  Are they actually learning anything in medical school anymore?  

[Gemini]

4 hours ago, Arasmas said:

GFinDC, I'm sorry your doctor is a... jerk.  I hate the attitude from doctors that just because someone didn't go to medical school that they must be an idiot who can't read and do their own research.  Your symptoms, particularly the inability to maintain your weight, sound like they could be explained by Celiac Disease.  The blood test for Celiac is a simple diagnostic test that is worth pursuing, even if to just rule it out.  I don't understand why doctors are so resistant when celiac disease is a fairly common disease. 

Reading your post made me angry because this is exactly what happened to me.  After I got really sick and started losing weight uncontrollably, I went to the doctor.  After they diagnosed me with GERD (really?) and then depression (REALLY?), I started doing my own research.  I requested the Celiac panel at my next appointment and was basically laughed out of the office and told to "stay off the internet."  After 6 months of testing my thyroid, digestive enzymes, blood sugar and discovering I was severely malnourished and anemic, I went back to the same office but saw a really nice nurse practitioner.  After reviewing my chart and history she recommended the Celiac panel... and what do you know, it came back positive.  By this point I was so sick and weak I was certain that I was dying of cancer or something.  The Celiac panel cost me $125 out of pocket (I have no insurance) and had they just let me get the test in the first place I never would have gotten that sick. 

If I've learned anything in the last year it's that you have to listen to your body and take charge of your own health.  Celiac Disease attacks your entire body and can cause a lot of problems outside of the digestive system.  From what I've experienced most doctors aren't particularly interested in diagnosing or helping to manage celiac disease, maybe because there's no pill or procedure to treat it.  If your doctors are unwilling to even run a test to rule out something that is a reasonably possibility, find a new doctor.  Dr. Google has helped me more in the last year than any M.d. I've seen and most people with Celiac Disease know more about the disease than their doctors do.  I hope you find some answers.  Good luck.   

This post is excellent and says it all!  I had the same experience, Arasmas, so every word you said about doctors here is true, true, true!

Ebloom......you sound like a walking, talking Celiac and if you cannot maintain your weight no matter what you do, then look for Celiac.  I could never get above 105 pounds and I ate like a teenage football player.  By the time I requested the blood work, because no one else did, I was down to 92-94 pounds and was a walking skeleton. If it weren't for my unending research on the internet, I would probably be dead now. You must be a very patient person because if any PA ever spoke to me like that, they would be taking them out by ambulance. It sounds like he learned about Celiac from a 1950's textbook!    Good luck and get tested...take no prisoners!

[notme]

yeah, what gem said ^^^^  this 'imaginary google disease' nearly killed me, too.  i'm 5'8" and i was 97 lbs before anybody even said the 'celiac' word - it must be the voldemort of the medical profession.   sorry that you're having so much trouble, but truth be told, it's the last thing they want to test you for.  because there are so many treatable symptoms that they can make $$ on without fixing the (systemic = causes the symptoms) underlying problem.  no pill for celiac, and once you're better (on a gluten-free diet, all these things clear up miraculously) you have less of a chance of developing worse ($$ treatable or requiring surgery $$ )  the longer i hang around here and hear all the stories of people being told they are nuts for wanting a (relatively inexpensive, so WHY NOT???!!) SIMPLE blood test, the only conclusion i am forced to come to is that the medical profession is steered away from diagnosing celiac or ncgi comes all down to the almighty dollar.  

welcome to the forum

[cyclinglady]

My tiny niece was just diagnosed with Crohn's (she did not present with typical symptoms).  With our family history of celiac disease, her GI was at least able to rule out celiac disease.  It was/is just a simple blood test.  BTW, a pill cam is what found the Crohn's damage.  

Your doctor should be looking for the source of your issues.  Keep advocating!  

[Jmg]

9 hours ago, Arasmas said:

 If I've learned anything in the last year it's that you have to listen to your body and take charge of your own health.  Celiac Disease attacks your entire body and can cause a lot of problems outside of the digestive system.  From what I've experienced most doctors aren't particularly interested in diagnosing or helping to manage celiac disease, maybe because there's no pill or procedure to treat it.  If your doctors are unwilling to even run a test to rule out something that is a reasonably possibility, find a new doctor.  Dr. Google has helped me more in the last year than any M.d. I've seen and most people with Celiac Disease know more about the disease than their doctors do.  I hope you find some answers.  Good luck.   

Well said!

Was it the PA that made that Dr Google remark? Disgraceful, regardless. 

As above Ebloom, write down advance what you want to get across. Get the test. Don't stop eating gluten till all testing is over, but after that point consider trialling gluten free even if you test negative for celiac. There are a lot of ways gluten can mess with you and it doesn't always show up in blood work or biopsy: 

Open Original Shared Link

Best of luck

[EBLOOM]

Well, I had my second appointment and the test was ordered. Everything came back normal, but I am glad I was at least able to rule it out. Bit of a bummer, though, because I thought I had finally figured out the issue. Thank you all for your help and support!

[ravenwoodglass]

44 minutes ago, EBLOOM said:

Well, I had my second appointment and the test was ordered. Everything came back normal, but I am glad I was at least able to rule it out. Bit of a bummer, though, because I thought I had finally figured out the issue. Thank you all for your help and support!

If your done with all celiac related testing now you should give the diet a good strict try for at least a couple months.

[ironictruth]

1 hour ago, EBLOOM said:

Well, I had my second appointment and the test was ordered. Everything came back normal, but I am glad I was at least able to rule it out. Bit of a bummer, though, because I thought I had finally figured out the issue. Thank you all for your help and support!

This scares me. I am in the process of looking for a new primary myself. Celiac or not, I think your symptoms warrant a GI and endocrinologist visit. Find a doctor you can trust and keep plugging away. Lots of things can cause malapsorbtion other then celiac and you need someone who is going to take you seriously. 

[EBLOOM]

Duly noted. Apparently their latest theory is hyperthyroidism (despite my lab test showing low for both t3 and t4), so we shall see if that pans out. I am still stuck on the malabsorption idea, but I am a little more hopeful after meeting with the other practitioner at the office (who actually ordered the test). He was much more willing to listen and since the PA seems to be about 30 years behind the medical literature, I think I will avoid her from now on. I can't thank you enough, and I wish you all the best!

[cyclinglady]

On August 19, 2016 at 1:43 PM, EBLOOM said:

Well, I had my second appointment and the test was ordered. Everything came back normal, but I am glad I was at least able to rule it out. Bit of a bummer, though, because I thought I had finally figured out the issue. Thank you all for your help and support!

What celiac tests were ordered?  I ask because I tested positive to only one of the celiac blood tests and it was not the standard screening "TTG IGA" that is often ordered.  A complete panel is best especially if you have another autoimmune disorder, in my opinion!  If you did not get the entire panel, then you can not rule out celiac disease.  Here are all the celiac tests.  

Open Original Shared Link

[EBLOOM]

I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.