Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help!

MattZ

Recommended Posts

MattZ Newbie
MattZ
Posted

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 :'(

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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 Newbie
MattZ
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.