Please Help!

[MattZ]

Hi everyone,

 

I will try to make this story as short as possible, but please help!  

I was diagnosed with Minimal change nephrotic syndrom at age 17 (currently 29 yrs of age)

This past december I had a HORRIBLE stomach virus, kept me down until I finally went to the ER in april.

They have arranged testing for galbladder disease and celiac tests. 

 

(Might I add, besides the nephrotic syndrom - which kept me on 120mg of prednisone for 9 months before I stopped spilling protein in my urin - albumin)

I also have diagnosed general anxiety disorder, PTSD, and depression.

 

My second trip to the er, I have been so drained I feel I can not go on.   A little light came from this visit, the doctor tested me and positive for MONO!  How do I have mono?  I am assuming my girlfriend that I live with or her daughter carries it, and while my immune system has been down it hit me.  The foods I have been able to eat are next to nothing.  Even went back to the er and asked for an IV of nutrients so I would feel better, was refused it because I was not dehydrated.   My temper is non-existant, if someone touches me I jump, and it feels like a knife between my bottom two ribs on my right side!   I CANT EAT without IMMEDIATELY RUNNING to the bathroom!  I drank a juicebox of 100 percent grape juice, same reaction!   AND I am losing my much needed weight so fast! (I am 6'2'' and down from 185 to 160 now.) 

 

I have this feeling that inside I know from my life experiences, and after reading so much about celiac, it's not my galbladder.   I had never puked for four months straight daily, with diarrhea 10-30 times a day.  (I am currently past the interview process for a new job, a very important one, and this scares me!)  

 

My surgeries are scheduled for the 25'th of next month, I am told not to go gluten free for the fact it will make the test not accurate.   I am so very tired of hurting, I want my relationship with my girlfriend to get back to where it was, and I want my sex drive back.   (let me add, the pure act of being intimate is enough movement to make me nauseous.)

 

I also am experiencing incomplete urination, drip drip drip after im finished.   Zip up and then unzip to finish!!@ AHHHH

 

My family doctor went ahead and ordered celiac blood tests, they were sent from WV to VA last thursday, to return this coming week.

 

In the middle of this, I went gluten free for 5 days, experienced relief in the sharp pain in my ribs, however did not have any energy.  Went to start taking my 1.5 yr old pitbull for a run (she's my therapy dog, and I worry she is not getting much needed exercise either.) 

 

My willpower is next to gone, im just so tired at this point, after a lifetime of diarrhea, year of hospitalization before they diagnosed my kidney disease (MIGHT I ADD, the doctors didnt diagnose me, my own MOTHER did!  She called a nephrologist and he was there in an hour starting the kidney biopsy)

 

I can't lose another job from being sent home because I am "contageous" they think, just because I am running to the bathroom!   And this is INSTANT, if I eat, I have to go.  At restaurants I usually finish half of a meal and have to run!

 

please help :'(

 

[nvsmom]

Welcome to the board.

 

Mono (EBV) is strongly suspected to kickstart autoimmune disorders, or to take them up a notch. I don't know why but there's something about those herpes related viruses (like chicken pox, mono, etc) that seem to do a number on people with autoimmune problems. I know that after having mono, my AI problems really started to express themselves... I suppose it could have been a coincidence but i don't believe in medical coincidences.

 

Do you know if your doctor ordered a full celiac panel for you? That would be:

ttg IgA and ttg IgG

total serum IgA

EMA IgA

DGP IgA and DGP IgG

AGA IgA and AGA IgG (older tests not used much any more)

 

I ask, because if he did, you are done your blood tests and you could probably cut back on your gluten intake a bit. If he missed some a bunch of test, you might want to get them done and them cut back on your gluten. You only need to eat enough to keep your autoimmune reaction going. I'm betting that if you ate your gluten for the day at home, in the evening (ex. a cookie and a slice of bread), it would be enough to keep the inflammation and going and damage apparent for the biopsy. You don't need to eat it throughout the day, so I would do it at home.

 

Your heavy fatigue, anxiety and neuro symptoms are definately linked to celiac. Kudos to you for recognizing that fact while suffering through it. Same with the bathroom problems. Keep it in mind... there is a light at the end of this for you.

 

There is a chance that celiac has damaged your gall bladder to the point where it might have to go. there are many around here who have had there gall bladders removed so don't close that door completely in case the gluten-free diet doesn't help it.

 

You might want to get your thyroid checked too. Hypothyroidism can slow your whole body down and affect every part of you, and it is quite common amoung celiacs.  If you pursue testing you could request: TSH (should be near a 1), Free T4 and Free T3 (should be in the 50-75% range of your lab's normal reference range, and TPO antibodies (should be very low).

 

Good luck. i hope you get some clear answers soon.

[MattZ]

Thanks for all of the words of help.  That was very insightful, I sent this link to my doctor so she could follow as I am not as knowledgeable on the details of all the testing.   I was so used to being sick from the kidney problems and swelling on / off.  (I was honorable discharged from the coast guard after their heavy salt diet with requirement to drink large amounts of water) I had swelled 30 lbs in a matter of days. 

 

Thank you again

Welcome to the board.

 

Mono (EBV) is strongly suspected to kickstart autoimmune disorders, or to take them up a notch. I don't know why but there's something about those herpes related viruses (like chicken pox, mono, etc) that seem to do a number on people with autoimmune problems. I know that after having mono, my AI problems really started to express themselves... I suppose it could have been a coincidence but i don't believe in medical coincidences.

 

Do you know if your doctor ordered a full celiac panel for you? That would be:

ttg IgA and ttg IgG

total serum IgA

EMA IgA

DGP IgA and DGP IgG

AGA IgA and AGA IgG (older tests not used much any more)

 

I ask, because if he did, you are done your blood tests and you could probably cut back on your gluten intake a bit. If he missed some a bunch of test, you might want to get them done and them cut back on your gluten. You only need to eat enough to keep your autoimmune reaction going. I'm betting that if you ate your gluten for the day at home, in the evening (ex. a cookie and a slice of bread), it would be enough to keep the inflammation and going and damage apparent for the biopsy. You don't need to eat it throughout the day, so I would do it at home.

 

Your heavy fatigue, anxiety and neuro symptoms are definately linked to celiac. Kudos to you for recognizing that fact while suffering through it. Same with the bathroom problems. Keep it in mind... there is a light at the end of this for you.

 

There is a chance that celiac has damaged your gall bladder to the point where it might have to go. there are many around here who have had there gall bladders removed so don't close that door completely in case the gluten-free diet doesn't help it.

 

You might want to get your thyroid checked too. Hypothyroidism can slow your whole body down and affect every part of you, and it is quite common amoung celiacs.  If you pursue testing you could request: TSH (should be near a 1), Free T4 and Free T3 (should be in the 50-75% range of your lab's normal reference range, and TPO antibodies (should be very low).

 

Good luck. i hope you get some clear answers soon.