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

Waiting for two months on biopsy results

Checks
 Share

Recommended Posts

Onegiantcrunchie Contributor
Onegiantcrunchie
Posted

What cristiana said! Very glad you've finally found out and can now look forward Checks :)

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

Celiac.com Sponsor (A8-M):


Checks Apprentice
Checks
Posted
  • Author
34 minutes ago, cristiana said:

Hi Checks

Thank you so much for contacting us to update us.  I am so glad you know where you stand now, after all this time, and what a relief you have found out before school starts (presumably, if your area is like ours, it starts next week?) 

You should now be entitled to all sorts of extras on the NHS, including a dietician, Dexa bone scans, blood tests, annual consultation with the gastroenterologist,  Category 6 jabs for Covid, etc.  It seems a bit hit and miss what is on offer to coeliacs in different areas, but well worth pursuing anything the NHS offers you. (Again, sometimes people are overlooked so if things go "silent", do chase this up in case).

Do join Coeliac UK, if only for the first year.  I think you will find their Food and Drink Directory worth its weight in gold - and/or their app.

Lastly, do come back to us if we can help you in the future.  It's nice to have a fellow Brit to talk to from time to time! 😆

Thanks Cristiana 😊 Yes definitely a huge relief, and just in the nick of time! I started back today but the first three days are training days, pupils go back next week. Most of the schools seem to be doing that locally here too although my children's school is a bit different and they started back today. Have just signed up for Coeliac Society, as you say their directory sounds great! And thanks for mentioning the NHS support also, would never have thought I may be entitled to all that! 

Will definitely check back in here again to see how things are going 🙂

Checks Apprentice
Checks
Posted
  • Author
28 minutes ago, Onegiantcrunchie said:

What cristiana said! Very glad you've finally found out and can now look forward Checks :)

 

28 minutes ago, Onegiantcrunchie said:

What cristiana said! Very glad you've finally found out and can now look forward Checks :)

Thanks Onegiantcrunchie! Definitely looking forward to taking the next step and getting myself well again. Great to have found such a friendly and supportive group ☺️

  • 2 years later...
ceslater Rookie
ceslater
Posted

Late response, but I'm interested to know how long it finally took to receive your results. My initial NHS blood test took one week to come back with an anti-tTG more than 60 times higher than the strong positive of 10 (614). That should be enough for a diagnosis, given my dad has confirmed coeliac. I waited 4 months staying on a gluten diet before my gastroscopy. They tried to postpone it again but I said I wasn't waiting any longer. I finally had it done. I've gone on a gluten-free diet. It's been 11 weeks and I still haven't heard anything. 

In the meantime, my daughter had a blood test - her anti-tTG was 562 so very high. They suggested she wait for a gastroscopy. I really don't see the point - it feels insulting to ask that of a 17 year old, and a farce. My daughter has fainted whilst at school due to a vit D deficiency and she's anaemic. Therefore, waiting is a risk to her health - it's abundantly obvious she has coeliac disease. I told the gastrologist she's already started a gluten-free diet because it's too risky to wait so long for an inevitable result which has only one possible treatment. My friend died from bowel cancer because of celiac disease - asking a 17 year old to risk a perforated bowel no matter how low the risk for an outcome we already know, is completely unreasonable. 

 

cristiana Veteran
cristiana
Posted

Hi @ceslater

I'm here in the UK.  I am so sorry you are having these issues.  

With regard to your results, we've been in a similar sort of situation but for a different condition, a few years ago.  My daughter had issues with a knee problem and we waited months and months for a follow-up appointment with an orthopedic surgeon.  We assumed it was issues with waiting lists due to COVID as other people in the area were also waiting like us.  Turns out somehow they had forgotten about us.  I've been told the NHS has a lot of IT issues, if you haven't I'd check that that hasn't happened to your gastroscopy report.

 

Checks Apprentice
Checks
Posted
  • Author

Ceslater am so sorry to hear about your situation and that of your daughter's. Yes I had blood done in Feb then biopsy May and didn't get results til September, ended up chasing through PALs patient liaison. My daughter is now diagnosed too, but purely on ttg blood test as her levels were really high .. keep pushing your hospital, it felt soul destroying but in the end I got there.... Best wishes to you both

cristiana Veteran
cristiana
Posted
10 hours ago, Checks said:

Ceslater am so sorry to hear about your situation and that of your daughter's. Yes I had blood done in Feb then biopsy May and didn't get results til September, ended up chasing through PALs patient liaison. My daughter is now diagnosed too, but purely on ttg blood test as her levels were really high .. keep pushing your hospital, it felt soul destroying but in the end I got there.... Best wishes to you both

That's a very good idea to speak to PALs, I'd do that.  That's an incredible wait... four months.  I

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

Celiac.com Sponsor (A8-M):


ceslater Rookie
ceslater
Posted

Thank you to both of you for replying. I'll check the results given been lost. Honestly, with an anti-tTG of 614.and a father who's confirmed, I know I have it so I wouldn't be going through another gastroscopy again. Hopefully they're just very very.... very slow! The time length of May to Sept sounds familiar! 

Checks Apprentice
Checks
Posted
  • Author

You poor thing Ceslater yes it's so frustrating. I had also been told to continue having gluten so was feeling very unwell. My poor family, I was very hard to live with! And yes Cristiana you're dead right about IT issues and hospitals. I think I fell down a crack as our hospital was transferring itself on to the (spectacularly mis-named) EPIC system. 

ceslater Rookie
ceslater
Posted

Thanks for the messages of support. :)My GP has given me the number of the gastrologist to chase them up. I said I shouldn't have to chase this up - I expect them to do their job!

I then contacted the secretary for the gastrologist and of course got through to an answer phone. 

This ridiculous process is sending a message out that coeliac disease is not serious, and there's no rush to make any changes. That's dangerous. Anyway ... I'll keep waiting and phoning, I suppose! 

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


  • Member Statistics

    • Total Members
      127,685
    • Most Online (within 30 mins)
      7,748
    Janahawk
    Newest Member
    Janahawk
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By trents · Posted

      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.   My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.       If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  
    • trents
      Colonoscopy with large are of inflammation

      By trents · Posted

      Welcome to the forum, @growlinhard1! If eliminating gluten from your diet makes significant improvement in your symptoms then there are two possibilities. Either you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is that celiac disease is an autoimmune disorder that creates inflammation and, over time, damages the lining of the small bowel which inhibits nutrient absorption whereas NCGS does not damage the lining of the small bowel. They share many of the same symptoms. At the end of the day, the antidote for both is to abstain from foods that contain wheat, barley or rye, the three gluten-containing grains. Some countries supply stipends and healthcare benefits for those with an official celiac diagnosis. If you live in the USA that does not apply. The main reasons for seeking an official celiac diagnosis are psychological and social. Many people have a hard time not falling off the gluten free bandwagon without an official diagnosis. They find it easy to rationalize it all away as being temporary or due to something else. When you have an official diagnosis, you tend to take gluten-free eating more seriously. Socially, family and friends are more likely to respect and attempt to comply with your need to eat gluten free if you have an official diagnosis of celiac disease. Your physician is more likely to take you seriously as well if you have an official diagnosis because there are typically other health problems that are spinoffs which develop from celiac disease in time. One autoimmune disease invites others. There are no tests for NCGS. Celiac disease must first be ruled out. We do have specific tests for celiac disease. By the way, some experts believe that NCGS can transition into celiac disease. If your endoscopy/biopsy is only a month away, I would encourage you to stick it out and go back on gluten to get an official diagnosis. You still have time to get a valid test result if you start back on gluten now, 10g of gluten daily which is about the amount found in 4-6 slices of wheat bread.
    • BoiseNic
      dermatitis herpetiformis outbreaks while on strict gluten-free diet

      By BoiseNic · Posted

      I have the same problem. No matter what I eat, I seem to get a break out every 1 to 2 months. I do not do oats, citrus fruits, apples, onions and other foods also, as those cause reactions. The only time I have zero problems is when I fast. The only staple grain I have is quinoa, as that doesn't seem to cause me issues. I have linked mine to a microbiome imbalance. I am currently on month 3 of Skinesa. It's supposed to take 3 months before seeing results. I guess we'll see.
×
×
  • Create New...