Another Confused New Kid

[SimonSez0721]

Hi,

 

I am hopeful that someone can relate to my story.  My poor family is tired of listening to my "crazy ramblings."  

 

I first sought medical help for pain which wouldn't resolve 25 years ago.  I was diagnosed with Palindromic Rheumatism.  Several years later, my diagnosis was changed to Fibromyalgia.  My fibro diagnosis seemed to cover most of my symptoms, and with three young children I didn't have the time to really pay attention to what was going on with me.  I managed my fibro over the years with varying combinations of medications and therapies.

 

In 1990, my headaches which had always been frequent, turned into a two week "tension headache"  but it passed.  In 2001, I started developing migraine headaches.  Now, 12 years later I'm taking topamax 125mg daily and have a prescription for treximet for breakthrough migraine pain.

 

In 2008, I started developing kidney stones.  I had some blasted with ESWL to clear my kidney under general anesthesia.  By 2011, I needed another round of ESWL.  This time, things did not go as smoothly as they had in 2008.  The procedure took 6 treatments over nine months, each under general anesthesia.  

 

AND, in the middle of these procedures, I passed a GALLSTONE!  I started vomiting from the nausea and pain.  I had a terrible case of pancreatitis.  Three days later they removed my gallbladder.

 

The surgeon told me that my gallbladder looked as though I had been a heavy drinker, which I have not.  This statement has always puzzled me.  Why would my gallbladder be so damaged?  What could have happened to it?  

 

Since the procedure, my doctor told me that I would have to be careful with my fat intake.  Because I have been trying to lose weight, I hardly eat any bread, as a rule.  However, here is what I have been noticing.

 

In the first weeks immediately following the surgery, I was very gassy and uncomfortable.  My doctor gave me creon which helped tremendously with the abdominal gas, bloating, and pain, for a while.

 

My last procedure was in January 2012, and unfortunately, although I tried two times to return to work, I was forced to resign my position.  The fatigue, pain and fog are more than I can manage and work effectively, too.

 

Lately, every time I eat anything with wheat in it, I feel shaky, my pulse races,  I have stomach pain, bloating, and abdominal pain.  My response is surprisingly rapid.  Sometimes I feel headachy, sometimes foggy.

 

I've been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Myofacial Pain Syndrome, Migraine Headaches, TMJ, Osteoarthritis, depression and anxiety secondary to living with chronic pain, and kidney stones.  But somehow, I have to wonder if maybe I'm at least partly misdiagnosed.  Is it possible that some of my symptoms are actually reactions to food intolerances?  I have been asking my doctors this question since 1995!  But, I just don't seem to get anywhere.

 

I don't know; maybe I'm just imagining a connection here where none truly exists?  I'm just so desperate to find something I can fix.  Does anyone have any insight?

 

Thanks

[shadowicewolf]

Get a celaic panel done.

 

There seems to be a link between celiac and gallbladder issues. I have also had mine removed.

 

The other symptoms you have may be related.

 

Also, if you choose to go through the testing (both the blood tests and the endoscopy plus biopsy) you must be on gluten for the tests to be accurate.

[SimonSez0721]

Thank you for your reply.  I understand the importance of not removing gluten prior to being tested.

 

I have read about the biopsy.  Do you feel that this is an important part of the testing process?

[cyclinglady]

Had my gallbladder removed because it was at 0 percent functionality.  I, too, think it was celiac related.  

 

The biopsy is important and it can access the amount of damage that you may have. My blood panel was mildly positive, but my biopsy showed moderate to severe damage.  Let's see if it improves within the next few months!   

 

My husband went gluten-free at the advice of his GP and my allergist.  He's doing great and adheres to the diet (12 years).  I wanted the testing done for my families' sake (and their support which is often hard to get without a formal diagnosis).  

 

Finally, you can develop food intolerances at any time.  I found mine years ago (eggs, dairy, etc.)

 

Hang in there and don't give up!

 

Welcome to the forum....

[iloathegluten]

I'll just echo what everyone else has said that it can definitely be related. My gallbladder failed when I was 15. I was going into the doctor and even the ER once with severe abdominal pain. My doctor suspected function with my gallbladder was off and decided to run a test to see how well mine was functioning. It was working at 2%, so they went ahead and had it removed. After it was removed, I was told it was very diseased and looked like it had atrophied from constantly swelling up.

 

I also had frequent tonsilitis as a child and several other health issues you wouldn't expect to see in someone as young as I was,so it is definitely possible most of your problems can be attributed to undiagnosed Celiac disease. I actually didn't realize how many health issues I had until I went gluten free. Kind of scary how you learn to accept all the problems as your normal even though the symptoms are awful and debilitating. About 3 or 4 months after going off it was the first time I woke up without a headache or joint pain.

 

Best of luck to you! I know how hard it is to be diagnosed with new syndrome after syndrome and wonder when the next problem is going to hit. I sincerely hope you find a link for everything! If not gluten, something else. I agree - something definitely has to be connecting it all.

[SimonSez0721]

Had my gallbladder removed because it was at 0 percent functionality.  I, too, think it was celiac related.  

 

The biopsy is important and it can access the amount of damage that you may have. My blood panel was mildly positive, but my biopsy showed moderate to severe damage.  Let's see if it improves within the next few months!   

 

My husband went gluten-free at the advice of his GP and my allergist.  He's doing great and adheres to the diet (12 years).  I wanted the testing done for my families' sake (and their support which is often hard to get without a formal diagnosis).  

 

Finally, you can develop food intolerances at any time.  I found mine years ago (eggs, dairy, etc.)

 

Hang in there and don't give up!

 

Welcome to the forum....

 

I appreciate your input on the importance of the biopsy.  If I can find a doctor to do a blood panel on me, I suppose that will be the next logical step if unless the blood panel shows no indication of any possibility of celiac?

[SimonSez0721]

Thank you for your reply. That is very interesting that you mention your childhood history of tonsillitis. It made me start thinking about some of my seemingly unconnected medical issues.

As a child, I was very sickly. My tonsils were always a problem. Finally, mine were tonsils and adenoids grew so large that they closed my eustachian tubes causing me to be fuctionally deaf. Once they removed my tonsils and adnoids, my hearing returned.

I have had a history in the past five years of menorrhagia which I had to have treated surgically and fibrocystic breast disease. The cysts are so large and strange that I have had to be followed by an oncologist. Yet, every single time I have asked a doctor if there is a hormonal or dietary connection between all of these problems, they deny it.

I even went to an allergist who dismissed me as a nut. I go to bed tired, I wake up tired, it hurts to be in bed, it hurts to be on my feet too long or to ride in a car too long. I am tired of listening to myself; I am certain my family is tired of me being sick and tired. There must be an answer out there. I have been trying to get this mystery solved since 1988!

I have not had a celiac panel done, but I have been tested for everything else under the sun. I happen to have some of my results with me. I don't know if any of these are the ones I should be looking at, but maybe someone can tell me if they are signficant?

BUN 16. 7.0-25.0

Creatinine 0.6. 0.4-1.2

BUN/Creatinine Ratio 26.7

Glucose 70. 60-99

Vitamin D 20. >30

TSH (Ultrasensitive) 3.73. 0.34-4.00

T3 Uptake 38.9. 32.0-48.4

T4 Throxine Total 6.7. 4.7-16.1

FTI 193.6. 99-636

Sodium 136. 135-146

Total Cholesterol 110. 150-200

Triglycerides 85. <150. Normal. 150-199 Borderline High

HDL 44 45-49 Dersiable

LDL 49. <100

VLDL 17.

Cholesterol/HDL Ratio 2.5

Thank you for reading my post, I know that you are reading this post because you are dealing with celiac or something similar. I wish you health and happiness. Thank you in advance for any advice or annecdotes that you have for me. I am so grateful for your support.

[GF Lover]

I was told many years ago from my Gyn that my fibrocystic breast disease was caused by too much caffeine.  I was a Mt. Dew fiend at the time so it made sense to me.  Fast forward a thousand years to today, I know that the caffeine part has no research behind it and limiting it for me had no effect.  But I also know now that it is believed to be caused by hormones.  A quick search will bring you up to speed on the causes.  The cause being hormonal would fit with me because although I have had a hysterectomy I still have my ovaries and my breast pain is cyclical. 

 

Those tests seem to be a basic array.  Thyroid, cholesterol and such.  Its hard to comment on your blood tests without the reference ranges listed next to them.  Were any flagged high or low?  Someone here may know the references for the TSH ones.  Have you had a Celiac panel done?

 

Hang in there.

 

Colleen

[frieze]

Thank you for your reply.  That is very interesting that you mention your childhood history of tonsillitis.  It made me start thinking about some of my seemingly unconnected medical issues.

 

As a child, I was very sickly.  My tonsils were always a problem.  I finally grew adnoids on my tonsils that were so large they closed my eustachian tubes causing me to be temporarily deaf.  Once they removed my tonsils and adnoids, my hearing returned.

 

I have had a history in the past five years of menorrhagia which I had to have treated surgically and fibrocystic breast disease.  The cysts are so large and strange that I have had to be followed by an oncologist.  Yet, every single time I have asked a doctor if there is a hormonal or dietary connection between all of these problems, they deny it.

 

I even went to an allergist who dismissed me as a nut.  I go to bed tired, I wake up tired, it hurts to be in bed, it hurts to be on my feet too long or to ride in a car too long.  I am tired of listening to myself; I am certain my family is tired of me being sick and tired.  There must be an answer out there.  I have been trying to get this mystery solved since 1988!

 

I have not had a celiac panel done, but I have been tested for everything else under the sun.  I happen to have some of my results with me.  I don't know if any of these are the ones I should be looking at, but maybe someone can tell me if they are signficant?

 

BUN  16

Creatinine  0.6

BUN/Creatinine Ratio  26.7

Glucose  70

Vitamin D  20

TSH (Ultrasensitive)  3.73

      T3 Uptake  38.9

      T4 Throxine Total  6.7

      FTI  193.6

Sodium  136

Total Cholesterol 110

      Triglycerides  85

      HDL  44 

      LDL  49

      VLDL 17

      Cholesterol/HDL Ratio  2.5

 

Thank you for reading my post, I know that you are reading this post because you are dealing with celiac or something similar.  I wish you health and happiness.  Thank you in advance for any advice or annecdotes that you have for me.  I am so grateful for your support.

vitamin D is low, chol is low normal, sodium is low normal, TSH is high.  good luck

[SimonSez0721]

OK, here goes. My PCP ordered a Celiac blood panel, and an upper GI to check for an ulcer.

He said we should have results in 3-4 weeks. He said I am way to uncomfortable for it to not be something. Yea? I guess?

[GFinDC]

Hi Simonsez,

 

Open Original Shared Link

 

I don't think they will be able to diagnose celiac disease with the upper GI series.  The  usual process for celiac testing is first blood antibodie testing (celiac panel) and then an endoscopy with multiple biopsy samples for microscopic examination.

 

Another good thing to get tested is your vitamin and mineral levels.  Your vitamin D is low.  People with celiac may have below normal vitamins and mineral levels.  Vitamin D is one of the commonly low ones.  But there are others, like B vitamins.

[SimonSez0721]

Well, I completed my upper gi with baium today. Vthe doctor's first impression was that I do not appear to have an ulcer. Yea! We can check that box on the list of things to rule-out.

They also drew several viles of blood to check for celiac and rheumatoid factor. GFinDC suggested thatbI request a vitamin and mineral level, if that isn't being done now, I will be sure to ask for it. Thank you.

Does anybody have an opinion on whether now is an appropriate time for me to try a gluten-free diet? Do I need to wait in case doctor wants to do an endoscopy? Are endoscopy's essential to a proper diagnosis?

[GFinDC]

Hi Simonsez,

 

Yes, you should wait until all the testing is done before starting the gluten-free diet.  Many doctors want the endoscopy as well as the positive blood antibodies before they will diagnose celiac disease.  Sometimes the endoscopy is scheduled for several months after the blood tests.  If that is the case, you can ask to be put on a wait list for a possible earlier appointment.  The other option is to skip the diagnostic process and just go gluten-free.  That works for some people.  Others really need the piece of paper saying celiac disease before they can commit to the gluten-free diet 100%.  Which way you go is a personal choice, and is fine either way.   Possible reasons to want the official diagnosis are children who might inherit the condition, participation in clinical trials might be affected,  school programs and benefits for the condition might require a paper confirming, taxes or food subsidies in some countries.

 

[NoGlutenCooties]

BUN 16. 7.0-25.0

Creatinine 0.6. 0.4-1.2

BUN/Creatinine Ratio 26.7

Glucose 70. 60-99

Vitamin D 20. >30

TSH (Ultrasensitive) 3.73. 0.34-4.00

T3 Uptake 38.9. 32.0-48.4

T4 Throxine Total 6.7. 4.7-16.1

FTI 193.6. 99-636

Sodium 136. 135-146

Total Cholesterol 110. 150-200

Triglycerides 85. <150. Normal. 150-199 Borderline High

HDL 44 45-49 Dersiable

LDL 49. <100

VLDL 17.

Cholesterol/HDL Ratio 2.5

 

 

Your Vit D is very, very low.  Your total cholesterol is also very low - which may sound like a good thing, but it means you not only don't have too much bad cholesterol, you also don't have enough good cholesterol.  Make sure you're getting enough good fats in your diet.  (A good fish/flax/borage oil with Omega 3, 6, and 9 in it is a good start.  Olive oil is also wonderful.)

 

I would echo everyone else in that it is important to stay on gluten until you get the test results.  I have read on here several threads where it takes many people months to get an appt. for an endoscopy, which is very unfortunate.  If this happens you may want to try a different gastro-intestinal doctor.  Once I had my positive bloodtest it did take 3 weeks to get an initial appt. with the GI doc, but then the endoscopy was scheduled for just one week later.  With a positive bloodtest there is always a possibility that there is something else even more serious going on so a decent doctor will realise this and get you in right away.  It is important to get the biopsy just to make sure it is Celiac and not something else going on.

 

Keep in mind that even if it is not Celiac, if you notice that you feel particularly crappy after eating wheat you could also have gluten sensitivity or a wheat allergy.  But given your low Vit D and low cholesterol, my bet is Celiac.

 

Just one other thing I wanted to throw out there, which didn't really occur to me until after my official diagnosis.  An official diagnosis also keeps future doctors from treating you like you're a nut for going gluten-free.  I know if I end up in the hospital for something then I have the official diagnosis in my medical history so that they know not to poison me - either with gluten food or with medicine that has gluten in it.  If it were just me telling them I didn't want it - or if I was incapacitated in some way and couldn't advocate for myself, they may end up poisoning me.  Doctors will tend to listen to an official diagnosis.  They don't tend to listen to a patient - even when the patient knows more about their own body than the doctor does.

[notme]

sorry you are going through this!  sure brings back memories for many of us, i'm sure.  i was tested/treated/diagnosed for alot of different conditions/symptoms.  seemingly unrelated....   guess what they were related to?  (celiac)  that also explained where my son's type 1 diabetes and daughter's r.a. <at age 12   ) came from.  (me)  good luck - i hope you get answers.

[SimonSez0721]

Thank you for your thorough and thoughtful reply. You have given me much to consider. While I would prefer to avoid an endoscopy if possible, because I blame my seven exposures to general anesthesia within eleven months in 2011 for the fibro flare that I have yet to shake off, I do see the wisdom of having a definitive diagnosis as you have pointed it out. Thank you.

Thank you also for commenting, as others have, on my nutrient levels. After I get these results back, I will be certain to request that anything that hasn't been checked is.

Thank you

[SimonSez0721]

Thank you for your reply and for sharing about your family. I am sorry about the challenges that your children have had to face. Your post made me think about the genetic connection between celiacs and their families.

My own daughter, at 8, started complaining of daily stomach aches. Unable to determine what was wrong, they sent her to the hospital where they tested her for everything. They never found any cause for her pain. They did however say this, "By the way, we ran an food allergy panel on you. You came up positive for peanuts, egg whites, and wheat." They didn't give us any advice, or education, or follow-up with her,

I remember that after a while she slowly started eating some of those foods again and it didn't seem to bother her anymore. Being so poorly educated on the subject, at the time, I thought she had "outgrown it".

Now, I suspect that it is more likely she is also celiac as she suffers from migraines, severe pms, and had an irritable uterus during pregnancy which ended in an emergency c-section.

[NoGlutenCooties]

 I blame my seven exposures to general anesthesia

 

Just to clarify... they don't use general anesthesia for an endoscopy.  They use IV sedation.  Yes, it is still a drug that takes a bit to completely wear off - but they are very different animals.