Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newly Diagnosed - Could Use Some Advice!
0

6 posts in this topic

Hi everyone,

 

New here so hoping to learn a few things. Daughter (14) just had diagnosis of Celiac disease by GP. Her Ttg is 18. ESR raised a bit - was 20, apparently (age needs to be factored into that, doc said). No anaemia and basic bloods normal (FBC). She's had a ton of symptoms over last couple of years, all leaning towards Celiac - painful bowels/stomach, cramps, regular migraines, numbness and tingling in hands and toes, freezing fingers and toes, dizziness (fainted once), muscle twitching (esp under eyes), and very low BP. Lots of autoimmune diseases in close family from Crohn's to hypothyroid to Sjogren's. She's been referred for an endo/biopsy but has to wait a month or maybe up to three months as when we see consultant it's not immediately for the endo - meantime, she's been told to keep on gluten (she's been semi-gluten free for a few months as she knows it hurts her instinctively. But without an actual diagnosis, 'slip ups' with school dinners have inevitably been happening.) And now she says she says she found blood in a BM (not much and bright red and it's never happened before. She's mostly constipated). I'm hoping she was mistaken about this and it was maybe undigested food - red pepper skins/tomatoes etc as we've had those in last couple of days. She was a little uncertain about this - one minute convinced it was blood, then possibly thinking it was food. Is a little blood normal for someone with celiac?

 

Anyway, if anyone in the UK has experience of getting a private appt I'd be keen to learn where and how! Seems impossible for kids to have this privately (I'd be paying, no insurance). Plus, is it usual for the GP to refer to the paed gastro for a consultation then she/he decides if endo/biopsy necessary? I kind of got the impression the referral was straight to endoscopy but I spoke to the consultant's secretary and she said it would be for an appointment only at this stage as he didn't always want an endo. Confused!! So the max wait time she said it could be was 3 months. A long time to feed your child poison. :-( Am I missing something here?

 

Well thanks so much if anyone has any comments or advice. I'll keep reading through the forums and get to know what's what.

 

p.s. I had celiac test a year or two ago as I have v obv symptoms but came back neg. I had been gluten-free for a few months. Should prob re-test now!

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

I'm a bit confused.

 

You must be eating gluten for testing.  The testing picks up on the damage being done to the body while eating gluten.

 

Frequent constipation can cause small rips that bleed during large, hard movements.  Since the description is of fresh, bright red colored blood; it is most likely from injury from large bowel movement.  Still get medical attention, but don't worry that it is worst case scenario.

0

Share this post


Link to post
Share on other sites

I'm a bit confused.

 

You must be eating gluten for testing.  The testing picks up on the damage being done to the body while eating gluten.

 

Frequent constipation can cause small rips that bleed during large, hard movements.  Since the description is of fresh, bright red colored blood; it is most likely from injury from large bowel movement.  Still get medical attention, but don't worry that it is worst case scenario.

Hi mommida,

 

Sorry - maybe didn't explain well! Yes, she's been eating gluten - I think enough to make it show in the blood test, which it seems to have done. At home she'll have gluten free stuff occasionally as it suits her better, but has school dinners - always quite 'gluteny' and other slip-ups. And for instance, last week I couldn't get gluten-free lasagne sheets, so just made regular. It's just when she has a gluten free sandwich for eg, the pain isn't there like it is immediately with a regular sandwich. It's just been guesswork until now, so I'd buy gluten-free stuff here and there so she's not in pain ALL the time.

 

That's what I'm hoping re the constipation. It's very worrying hearing your child report that. Thanks for the reassurance and you reply.

0

Share this post


Link to post
Share on other sites

Hi

 

She may have a hemorrhoid.  I hope someone who lives in the UK will read your post and give you advise on getting a private appointment.  Would it help if you called everyday to see if there has been a cancellation.  It would be best to try to get her in to see a gastroenerologist as soon as possible so she can quit feeling miserable sooner.  I live in the states and I was diagnosed 5/21/2012. My Deamidated Gliadin Abs, IgA was 101 normal range should be 0-19. This would indicate a strong positive for Celiac disease. The nuerologist referred me to a gastroenterologist who decided that instead of doing an endoscopy he would send me to get a genetic test for celiac disease which also returned positive(I hear these tests are very expensive). Anyhow, my point in telling you this is that your daughter probably has a first degree relative who has celiac disease.  That may be you or her Dad or a aunt, uncle, grandarents.

 

Good luck!

0

Share this post


Link to post
Share on other sites

Welcome to the board.

 

I'm sorry your daughter has to wait so long for a biopsy. That is so very very wrong. :(  If you need that biopsy, I really hope they hurry her through the line.

 

I agree with txgal, it sounds like a hemorrhoid. they can be quite surprising and turn toilet's water red if it is newly bleeding with a bowel movement. :(

 

Best wishes to both.

0

Share this post


Link to post
Share on other sites




Thanks, txgal748. I asked her about haemorrhoids and she wasn't really sure if she had or not. Could be internal, I guess. Re the private appt, it's not so much that there isn't availability - for instance, I could get myself a private appt tomorrow most likely. The problem is the private hospitals in our area don't seem to take kids under 16. They simply don't employ paediatric gastros. I have possibly found a bigger children's hosp that has a private dept - it's further away but that's fine.Fingers crossed they come good. The NHS appt a few weeks away is in a great teaching hospital near us and I'm in no doubt would offer a great service. It's the frustration everyone suffers here in the UK - we all have to join the queue, although I do believe the NHS, on the whole, is a remarkable thing and I wouldn't want to be without it! Interesting that you didn't have to have an endo - so it can happen! Daughter and I a bit nervous about that. If anyone else has celiac in the family, it's likely to be me (have all the symptoms and so far DXed with IBS). I'm getting re-tested asap - first test was when I was gluten free. My brother has Crohn's, my dad IBS forever (I think undiagnosed celiac) and my grandmother suffered with so many celiac symptoms all her life, it makes me want to weep she went undiagnosed - or at least never even tested as far as I know. Anyway, I hope you're doing well and things are getting better for you.

 

Thanks nvsmom - this board is certainly a great resource! Oddly, she said the water didn't go red - which may be some comfort and point more to undigested food?? I never saw it. I told her not to flush next time so I can check it! She's quite anxious about things anyway so I'm wondering if it's a case of her 'seeing the worst' when it was just food. I'll be taking it seriously though, and following up. I just hope I can get her an appt sooner rather than later. Thanks for the kind wishes :-)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,550
    • Most Online
      1,763

    Newest Member
    ahp
    Joined