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

Saw My Gastroenterologist Today...

Tabasco

Recommended Posts

Tabasco Apprentice
Tabasco
Posted

I think she might be a keeper. She didn't dismiss my symptoms or make me feel like a hypochondriac. She said that a lot of my symptoms sound like celiac but some may have other causes. She is very thorough. She is testing me for everything. These are the labs that I can remember:

Celiac Panel

Antibodies

B12

Ferritin

Thyroid (TSH)

CBC w/ diff

Cholesterol

A1C (for diabetes)

Hep screen (since I have a tattoo)

U/S for gallbladder

Transit time for chronic constipation (swallow pills with markers in them and follow up with x-rays at intervals)

Diabetes, heart disease, gallbladder, hepatitis, stroke all run in my immediate family. My older sister had a stroke at 23. She has a genetic blood disorder called Factor V deficiency, which causes clotting.

Dr. Jagiella is referring me to an Oncologist to be screened for Factor V deficiency as well. She said that if I have it then that can affect the circulation to my gut thus affecting my transit time due to small clots in the arteries.

She suspects that I may have Metabolic Syndrome as well. That would explain my weight gain. Today I was hypertensive in the office. I guess I have been for my last few dr. visits. And I know that my cholesterol is elevated. Has been for over 20 yrs. Not high enough to treat medically but hangs out around 200. She said my liver felt slightly enlarged too. Ho- hum...I am feeling like a fatty-boom-ba-latty now.

She saw the rash on my back and said "Oh yes...this needs to be biopsied". She seemed suspicious of it. So it's back to the derm too.

She said she isn't going to give me any meds or tell me anything until we get the labs back. If I test positive then she wants to do the biopsy for confirmation.

So that's where I am today. Another step closer to knowing one way or the other.

I'll keep you posted.

Stef

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

She sounds very thorough, Stef--please keep us posted. :)

Tabasco Apprentice
Tabasco
Posted
  • Author

Still waiting on the genetic results but so far everything has come back normal. I haven't seen the numbers, just going by what the nurse said. I guess this is good news but it is a little disappointing. When you have all of these symptoms all of your life and think that maybe they're not all random, that there is really a cause, it's a relief. I feel like a hypochondriac. I don't WANT to be sick. I don't want to have a "syndrome" or a "disease". I don't want to even be allergic or sensitive to anything.

My gallbladder U/S is scheduled for tomorrow but I can't make it. I forgot to tell work about it and it's too late to spring it on them.

My transit time study is next week so I will do that and I will also see the hematologist and the derm. I still need to know if I have Factor 5 deficiency and I need a biopsy of the rash...which is why I started this journey to begin with.

I'm not anemic, or diabetic, or hypothyroid. I don't have hepatitis either...thank God. My B12 is good too.

We'll see what the derm says.

So...can I be positive for DH but not have positive labs?

ravenwoodglass Mentor
ravenwoodglass
Posted

s

Still waiting on the genetic results but so far everything has come back normal. I haven't seen the numbers, just going by what the nurse said. I guess this is good news but it is a little disappointing. When you have all of these symptoms all of your life and think that maybe they're not all random, that there is really a cause, it's a relief. I feel like a hypochondriac. I don't WANT to be sick. I don't want to have a "syndrome" or a "disease". I don't want to even be allergic or sensitive to anything.

My gallbladder U/S is scheduled for tomorrow but I can't make it. I forgot to tell work about it and it's too late to spring it on them.

My transit time study is next week so I will do that and I will also see the hematologist and the derm. I still need to know if I have Factor 5 deficiency and I need a biopsy of the rash...which is why I started this journey to begin with.

I'm not anemic, or diabetic, or hypothyroid. I don't have hepatitis either...thank God. My B12 is good too.

We'll see what the derm says.

So...can I be positive for DH but not have positive labs?

Yes you can have DH and not have positives you can also have celiac and not have positive labs or biopsy. False negatives are not unusual. When your done with all testing for celiac be sure to give the diet a good try no matter what the results. Being gluten free will not effect testing for anything other than celiac so it does not hurt to try the diet while other stuff is being excuded.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

My son had a negative celiac blood test but had DH on the back of his knees, lots of other celiac type symptoms and a positive response to the diet. So I have agree with Ravenwoodglass, try the diet anyhow. Hope you are feeling better soon.

RA

ravenwoodglass Mentor
ravenwoodglass
Posted

One thing I forgot to mention about the DH issue. Make sure the derm is familiar with the process for biopsy. If he biopsies the lesions themselves that will come back negative. The biopsy needs to be tissue beside the lesions.

Tabasco Apprentice
Tabasco
Posted
  • Author

I'm looking at the labs that I've gotten back so far and all I see that that might be specificly part of a celiac panel is

Immunoglobulin A, Qn, Serum - 310 range 70 - 400.

Don't know what this means though. Looks like it's in the normal range but I don't know exactly what it's measuring.

What results, specifically, should I be looking for?

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,782
    • Most Online (within 30 mins)
      7,748
    BH1951
    Newest Member
    BH1951
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Ok thank you.  Me either 
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.