Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Yet Another Newbie

flourgirl

By flourgirl
in Coping with Celiac Disease

Recommended Posts

flourgirl Apprentice
flourgirl
Posted

Hi. Just want to thank all of you for being here, and for all of the comments, advice and support you provide for one another. It's so nice to not feel quite so alone here.

I was diagnosed in November, after one lousy summer of getting more and more sick. The symptoms are just too many to list, the tests I've taken also too many. Looking back I see so many instances of Celiac and horrible illness. Who'd have thought? I wish I could be more certain if all of the symptoms are really Celiac, or if other things are going on. I still am sometimes just overwhelmed by it all.....not so much the diet (although Iget a bit frustrated with that too, sometimes), just this constant sick feeling.

Am looking forward to the comraderie I find here.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Welcome to the board, and don't hesitate to ask if there's anything we can do to help :)

happygirl Collaborator
happygirl
Posted

flourgirl,

Welcome to the board!!!

I'm sorry that you have gone through so much, but I hope with the answers, life will improve! This board is a great place, and will make the Celiac learning curve much easier. Hope that you stick around and make yourself right at home. :)

missy'smom Collaborator
missy'smom
Posted

Welcome. This is a very supportive community. :)

jewi0008 Contributor
jewi0008
Posted

Speaking of being a "Newbie," I may "officially be a "Newbie" pretty soon. I've been miserable for many years, too...since I was little. Yesterday, finally, I went to a GI for the FIRST TIME EVER. I'm now 25.

They are testing me for: Chrons, Celiac and Colitis. Is this normal...does anyone know?

Also, I got some old medical records in the mail from when I was younger...like High School age. There was a period of about 3-5 years where I see I went in for "rash around my nose," and then "rash on my chin." Weird. Kept coming back. Anyone know what that is/was?!

I'm scared for the blood tests to come back. Feb. 26th I'm having a Colonoscopy and the other one with the tube down the throat.

ElseB Contributor
ElseB
Posted

I'm a newbie too - officially Celiac for only 16 days (confirmed by biopsy January 30). I suppose I'm lucky though, I was diagnosed without ever really having any Celiac symptoms, so I wasn't sick for months or years before being diagnosed like so many other people. Back in October I got sick with antibiotic-induced colitis and c.difficile (nasty gastrointestinal bacteria). Then just when I was feeling better and thought I was on the road to recovery, the doctor announces that she was going to test me for Celiac!

I think it is normal for them to test for Crohns, colitis and Celiac because they can present with similar symptoms. They're also all supposedly genetic. In my case, my sister has Crohns, but no one else in the family does, and I'm the lone Celiac! My poor mother feels so guilty that she gave birth to two daughters with genetic gastrointestinal disorders!

kbtoyssni Contributor
kbtoyssni
Posted
Speaking of being a "Newbie," I may "officially be a "Newbie" pretty soon. I've been miserable for many years, too...since I was little. Yesterday, finally, I went to a GI for the FIRST TIME EVER. I'm now 25.

They are testing me for: Chrons, Celiac and Colitis. Is this normal...does anyone know?

Also, I got some old medical records in the mail from when I was younger...like High School age. There was a period of about 3-5 years where I see I went in for "rash around my nose," and then "rash on my chin." Weird. Kept coming back. Anyone know what that is/was?!

I'm scared for the blood tests to come back. Feb. 26th I'm having a Colonoscopy and the other one with the tube down the throat.

Welcome to OP and the other newbies here!

jewi - Sounds like your GI is being pretty through testing for Chrons, Celiac and Colitis. The rash could be DH. Or it could be some other sort of rash which may or may not be caused by celiac. It's really hard to say. Do you still get it?

Don't be scared about the blood test results. Remember that if they come back positive, you will have you answer to all your years of suffering and be able to get your health back on track. Also remember that blood tests and scopes are notorious for false negatives so you might want to try the diet regardless of blood test results. But don't go gluten-free before the scope or you'll have a higher likelihood of it coming back negative!

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

Celiac.com Sponsor (A8-M):


jewi0008 Contributor
jewi0008
Posted

Well...I already got my blood tests, BUT the colonoscopy and that stuff isn't until Feb. 26th BUT when I talked to the Dr today he said that because I got the blood tests done I can go back to a gluten-free diet. Is this not correct?!?

No, I do not still get the rash. Around that time in my life I started also getting the painful cracks in the corners of my mouth. I have gotten these up until this point in my life, though never as bad as when I'd first get them?!

Welcome to OP and the other newbies here!

jewi - Sounds like your GI is being pretty through testing for Chrons, Celiac and Colitis. The rash could be DH. Or it could be some other sort of rash which may or may not be caused by celiac. It's really hard to say. Do you still get it?

Don't be scared about the blood test results. Remember that if they come back positive, you will have you answer to all your years of suffering and be able to get your health back on track. Also remember that blood tests and scopes are notorious for false negatives so you might want to try the diet regardless of blood test results. But don't go gluten-free before the scope or you'll have a higher likelihood of it coming back negative!

evie Rookie
evie
Posted
Well...I already got my blood tests, BUT the colonoscopy and that stuff isn't until Feb. 26th BUT when I talked to the Dr today he said that because I got the blood tests done I can go back to a gluten-free diet. Is this not correct?!?

No, I do not still get the rash. Around that time in my life I started also getting the painful cracks in the corners of my mouth. I have gotten these up until this point in my life, though never as bad as when I'd first get them?!

I had the sore mouth corner cracks unril I started vitamin B...seemed to help and they went away. glad you are getting diagnosed and can get on to feeling much better, it is rough to have problems most of a LONG life like myself. You will get very good advice here..lots of very helpful people on this forum. good health to you...evie

Lux Explorer
Lux
Posted

Jewi,

I just wanted to let you know that you're not alone. I'm going in for a biopsy (via gastroscopy) as well as a colonoscopy on the 20th. I am 25, and have been experiencing symptoms (for which nobody offered any viable explanation) for five years now. Personally, I cannot wait (to get these procedures done) so that I can finally begin to take control of my "situation".

I am slightly concerned that your dr. has suggested your going onto a gluten free diet before having the biopsy. Unfortunately, many med "professionals" seem to get this wrong for some reason. It is important that you INCLUDE gluten in your diet up until you have had the test; otherwise, it may indeed produce a false negative (which, as many will attest to in this forum, is quite a common occurrence for Celiacs undergoing the biopsy/blood tests, anyway). Going gluten free will allow your bowel to heal; thus, it makes sense that an accurate test would require for you to have been eating gluten beforehand.

In saying that, it is also true that positive results from the gluten-free diet itself functions as a (if not THE) diagnostic tool for celiac disease. I am choosing to have the other tests done simply for peace of mind (to eliminate any other possibilities); that said, to each their own!

Keep us updated with your results!!

xo

happygirl Collaborator
happygirl
Posted
Well...I already got my blood tests, BUT the colonoscopy and that stuff isn't until Feb. 26th BUT when I talked to the Dr today he said that because I got the blood tests done I can go back to a gluten-free diet. Is this not correct?!?

You should be consuming gluten if you are still undergoing testing for Celiac. Taking gluten out increases the chances of false negatives. The damage caused by Celiac happens when you are consuming gluten, and heals when gluten is taken out.

Darn210 Enthusiast
Darn210
Posted
Well...I already got my blood tests, BUT the colonoscopy and that stuff isn't until Feb. 26th BUT when I talked to the Dr today he said that because I got the blood tests done I can go back to a gluten-free diet. Is this not correct?!?

...go back to a gluten-free diet?

I'm assuming you were gluten free for a while and then on gluten for your blood test? How long were you back on gluten? If it wasn't long enough, your blood test might not be accurate.

Stay on gluten until your endoscopy.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. K6315
      - K6315 replied to K6315's topic in Related Issues & Disorders
      4

      Newly gluten free… withdrawal?

      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    2. kate g
      - kate g posted a topic in Gluten-Free Restaurants
      0

      Nandos improper preparion celiac childrens food

      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely...
    3. Scott Adams
      - Scott Adams replied to TexasCeliacNewbie's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High blood test numbers - with scales. Any advice?

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.
    4. trents
      - trents replied to K6315's topic in Related Issues & Disorders
      4

      Newly gluten free… withdrawal?

      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    5. K6315
      - K6315 replied to K6315's topic in Related Issues & Disorders
      4

      Newly gluten free… withdrawal?

      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,756
    • Most Online (within 30 mins)
      7,748
    Tdizzle18
    Newest Member
    Tdizzle18
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    • kate g
      Nandos improper preparion celiac childrens food

      By kate g · Posted

      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely for chicken.  This is fine and what we ordered however nandos need to take note of your practises for the safety of celiac children. my daughter has been ill from their nandinos chicken before and i emailed head office and they wouldnt accept responsibility 
    • Scott Adams
      High blood test numbers - with scales. Any advice?

      By Scott Adams · Posted

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
×
×
  • Create New...