I'm So Discouraged.

[Ace2011]

I've been seeing a GI and they've been doing tests to try to determine a cause for my issues. I've gone through several blood tests, a colonoscopy, and (last week) an endoscopy. I just got a letter from their office saying that all of the biopsies were normal and to continue my treatment plan until my appointment in November. Right now they have me on three different medications that aren't working. I feel horrible. I'm always exhausted, every time I eat I get sick (nausea and diarrhea), horrible joint pain, migraines, and I'm still losing weight. I've lost over 20% of my body weight in the past year and I'm currently around 85 pounds. 

I'm planning to get my records from them and copies of all of the reports to see what they say. I just don't know what to do. I have a toddler and I want to be able to enjoy this time with him but instead I feel like this. 

[SMRI]

How tall are you?  What other testing have they done?  Have you seen an endocrinologist?  November is too long to wait.  Can you get to the Mayo Clinic?  If your testing has come back negative for Celiac, there is obviously something else going on and a good multi-specialty clinic is the way to go.

[Ace2011]

I'm 5'2". I don't have a complete list of all of the blood work ('m working to get my records) but it included the tests for celiac, thyroid, and several tests to check for vitamin deficiency. I haven't seen an endocrinologist yet, the gastroenterologist was the doctor that my PCP referred me to first because due to my symptoms he suspected celiac or crohn's. The closest Mayo Clinic is roughly 5 hours away. 

[cyclinglady]

Hang in there Ace! Getting your lab results is terrific. Everyone should keep track of their medical records.

So, they are treating your symptoms with meds. Do they have any guesses as to what you have?

I hope you feel better soon. Maybe you can get an earlier appointment (cancellation).

[SMRI]

I'm 5'2". I don't have a complete list of all of the blood work ('m working to get my records) but it included the tests for celiac, thyroid, and several tests to check for vitamin deficiency. I haven't seen an endocrinologist yet, the gastroenterologist was the doctor that my PCP referred me to first because due to my symptoms he suspected celiac or crohn's. The closest Mayo Clinic is roughly 5 hours away. 

 

I'm talking about going to the Mayo Clinic in Rochester, MN.  Make and appointment with the endocrinology department there.  They do an intake appointment where you go over your symptoms and concerns, that lasts about an hour or so.  Then they do a complete physical.  While they are doing your physical, the staff if working up appointments for you with whatever specialists they think you should see to start.  They hand you a packet and you see specialist after specialist.  As those appointments progress, you usually get more tests and appointments added on.  Plan on spending a week there to get everything done.  The dr's talk, you meet with your endo again, review everything and move on depending on what they find.  It's certainly much, much easier than running from one clinic to another, waiting weeks between, having no communications between the dr's, etc.  There are very inexpensive hotels and they all have free shuttles to/from the clinic so it's easy to get around.  I recently stayed at one extended stay hotel for $50/night--could cook my own food in the kitchen, etc.  Yes, it's money you have to spend, but it's better than doing all the guess work and running around.

[Ace2011]

Hang in there Ace! Getting your lab results is terrific. Everyone should keep track of their medical records.

So, they are treating your symptoms with meds. Do they have any guesses as to what you have?

I hope you feel better soon. Maybe you can get an earlier appointment (cancellation).

No, they have no clue what I have. We're still as clueless as we were in the beginning.

[nvsmom]

How frustrating for you!  

 

It's a good idea to get those medical records. Sometimes doctor don't run all of the correct tests, and then there are those who interpret test results incorrectly or sweep borderline abnormal tests under the rug.... It's not uncommon.

 

For celiac disease, the doctor should have run most of these tests:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

The more tests run the better because these tests do miss celiacs sometimes. Even the endoscopic biopsy misses 1 in 5 celiacs.

 

Were you eating gluten prior to testing? Being gluten-free can affect the results.

 

Did your doctor ever mention non- celiac gluten sensitivity (NCGS) to you?  It has  the same horrible symptoms as celiac disease but all celiac tests will be negative because the intestines are not damaged.  If you are sure the celiac disease testing is done, you might want to try the gluten-free diet for 3-6 months, and keep a food and symptom journal, to see if your health improves - the only way to diagnose NCGS right now is a positive response to the gluten-free diet.

 

Did the doctor test you for Lyme or SIBO?  Those can cause the same symptoms as celiac disease.

 

As for the thyroid issues, I think the best tests are these:

TSH - should be near a 1 regardless of the lab's normal range

free T3 and free T4 - should be in the 50-75% range of your lab's normal reference range... being in the bottom can often be a problem - it was for me

TPO Ab - should be pretty low

 

Best wishes to you.  I hope you find answers soon.

[Ace2011]

I have my records and this is the list of the bloodwork that was ordered with the results in parenthesis. 

CBC (low iron)
CMP  (creatinine was low and total protein serum was high)
TSH  (0.92)  ranges 0.36 - 3.74
TtG IgA-TTGABA  (2) ranges 0 - 3

IgA total (404) ranges 91 - 414
CRP (<0.2) ranges 0.0 - 0.9

I was eating gluten at the time of all tests and procedures. I am just now beginning to eliminate gluten and starting my food/symptom journal. He has not mentioned anything to me. He just keeps saying that all tests are coming back normal and giving me prescriptions that aren't helping. He has also not tested me for Lyme (admittedly that isn't very common here) nor SIBO. 

@SMRI Unfortunately, visiting the Mayo Clinic isn't an option for me right now. 
 

[nvsmom]

Do you happen to have the normal ranges for those tests? Lab ranges can vary quite a bit.

 

You might want to try to get the rest of the celiac disease tests run.  It looks like he only ran the tTG IgA and that one can miss up to 25% of all celiacs.  Lyme and SIBO might be worth looking into if you can't find answers. If all celiac disease tests come back negative you might want to try the gluten-free diet in case you have NCGS - give it a few months on the diet.

 

Is your liver fine? I was just wondering because of your elevated serum proteins.  Celiac  can cause liver issues too...Of course celiac disease is not the only cause of problems but this is a celiac disease forum so we tend to approach health issues from that angle.   Open Original Shared Link

[Ace2011]

Do you happen to have the normal ranges for those tests? Lab ranges can vary quite a bit.

 

You might want to try to get the rest of the celiac disease tests run.  It looks like he only ran the tTG IgA and that one can miss up to 25% of all celiacs.  Lyme and SIBO might be worth looking into if you can't find answers. If all celiac disease tests come back negative you might want to try the gluten-free diet in case you have NCGS - give it a few months on the diet.

 

Is your liver fine? I was just wondering because of your elevated serum proteins.  Celiac  can cause liver issues too...Of course celiac disease is not the only cause of problems but this is a celiac disease forum so we tend to approach health issues from that angle.    Open Original Shared Link

 Sorry, I just added the ranges in my last post! 

I'll make sure I write down the remaining tests for celiac that should be done and ask about them. 

I'm assuming my liver is fine but I was never told about any of the lab work being high so I don't know for sure. I just found out when I picked up my medical records from them on Friday. 

[nvsmom]

Your tTG Iga is normal but it is not at zero or low.... I would assume it means you are fine but you never know.  Getting a few more tests, especially the DGP IgA, DGP IgG, and tTG IgG would most likely catch celiac disease if it's there. Again, remember that none of these tests will catch NCGS and it is much more common (about 6% of people suffer with this compared to <1% of the population with celiac disease).

 

Your liver is most likely fine but you may as well ask the doctor about the elevated proteins. At Open Original Shared Linkit said: 

 

High values

High albumin levels may be caused by:

• Severe Open Original Shared Link.

High globulin levels may be caused by:

• Diseases of the blood, such as multiple myeloma, Open Original Shared Link, Open Original Shared Link, macroglobulinemia, or Open Original Shared Link.
• An Open Original Shared Link, such as Open Original Shared Link, Open Original Shared Link, autoimmune Open Original Shared Link, or Open Original Shared Link.
• Kidney disease.
• Liver disease.
• Open Original Shared Link.

 

 

 

Open Original Shared Linkbe chronic inflammation which can be caused by autoimmune diseases (like celiac disease, lupus, and RA).  Because you are having so many health issues, I would discus it more with your doctor.

 

Hang in there. It is incredibly frustrating trying to figure out what is wrong, and then even when you do find an answer the treatment can take so long to help that you doubt the diagnosis.  It is a tough time... But you are in good company around here, I think the majority of us have been through a similar experience.

 

Best wishes.