Kazbo

OK, good point. I'll try and avoid prison if I don't get the diagnosis 😆😬

I have been gluten free off my own back for about 7 weeks. I had a bumpy ride to begin with and I'm now reducing lactose after some symptoms returned.  I am waiting for my gastro referral to come through but in the mean time I'm finding things have improved significantly since I changed my diet. 

I am wondering how many of you NEEDED the diagnosis of celiac or if your self diagnosed and have been happy with that. Or maybe you just say Non celiac gluten sensitivity and  that's enough for you.  

I am really not sure which mine is but I feel confident now that it's one of the above. I'm not sure I want to face to gluten challenge for a diagnosis where celiac may or may not be discovered but is knowing for sure helpful?

I also worry that NCGS might not be taken seriously,  although I am sure for those suffering it is very serious indeed!  

I'm interested in others thoughts and experiences to help me make a choice or to feel that NCGS matters too! 

Thank you everyone, I have been referred to gastroenterology, which is great but just more waiting.  In the meantime I'll carry on gluten free. 🙂

6 hours ago, Scott Adams said:

If your Total IgA Test was deficient, like you mention, then you could have a false negative with your tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease.

I'm not 100% if sure if a result of 0.2 is deficient but I think it's closer enough to warrant further exploration considering that giving up gluten has had an impact.  Well see later.  🙂

8 hours ago, RMJ said:

How long have you been gluten free? If you have additional tests done while gluten free you could get false negative results.

A month now,  I am aware of these but I just felt I didn't have much choice but to try it anyway. I'm glad I did because over all I feel better and that is what's most important to me.  🙂

Tissue transglutaminase IgA level < 0.2 U/ml [< 14.9]; No serological evidence of Coeliac Disease Please refer to the joint BSPGHAN and Coeliac UK guidelines (2013) From 01/04/2022 TTG's will be processed at Mid Yorkshire Hospital laboratories.

Note change in method and change in reference range

Note: TTG tests are not currently in our scope of accreditation for ISO 15189

This was all the previous test said.  I didn't think much of it at the time as it says no evidence of celiac, but the test doesn't seem extensive unless I've missed something? 

Hi, I have been having issues for a few years, I decided to do my own little experiment and go gluten free. I will be telling the dr of my experience at the appointment tomorrow as it's been a bumpy ride, with rashes, chronic D, and stomach pains.  Other than that I am actually feeling better 😆. 

I was tested for celiac in 2022 but the results were supposedly negative.  I only had a basic Iga which came back at 0.2 u/ml. Which I think maybe borderline deficient??? No other tests were done.  I think I need a total Iga? Or should I be asking for something else?  I was also going to jump straight in and request an endoscopy to check the small intestine. 

I would be interested in any thoughts or suggestions. I'm in the UK. 

Thank you 😊 

51 minutes ago, knitty kitty said:

@Kazbo,

Yes, you should carry on.

I agree with @trents that more complete testing should be done before going gluten free.  

Since symptoms often worsen after reintroducing gluten after being gluten free, you may want to continue with eating gluten.  You will need to be consuming gluten for an endoscopy with biopsies which is the gold standard for diagnosing Celiac Disease.

Since you've had diarrhea for so long you should be checked for nutritional deficiencies.  Celiac Disease causes malabsorption of essential nutrients.  Nutritional deficiencies can damage the body. 

Thyroid problems can be caused by malnutrition or may be caused by a second autoimmune disease,  autoimmune thyroiditis, frequently found concurrently with Celiac Disease. 

Thiamine deficiency can precipitate thyroid problems.  Niacin deficiency can precipitate Dermatitis Herpetiformis.  

Getting a definitive diagnosis now can save you from health problems in future.  

Thank you for this information.  It's hard to think about going back to gluten at the moment as I've just been brave enough to take the leap. What you are saying makes sense though. Thank you 😊 

Thank you, for that info. 🙂

I have been pretty careful and researched everything I've eaten so far but I realise there is so much to learn. 

The test was not helpful or followed up, I think I just reached breaking point so decided to do my own thing and see. I just wasn't expecting these reactions. 

I also have a thyroid condition which I am aware has links with gluten issues.  

Hi everyone,  I'm so new to this so be kind 😀. I have been experiencing diarrhea, bloating and a couple of other symptoms of gluten intolerance for the last 5 years. I have had a simple blood test in the past which I was told came back normal, it was the TTg ItA and my result was 0.2. The Internet tells me different things here so I've no real clue. Anyway as I am sick of experiencing these issues I decided to give gluten free a bash 5 days ago and see what happened.  Well, I have had ĺ mixed results, sometimes the diarrhea eases sometimes not, I have stomach craps and feel bloated today. Yesterday I came out in a rash which I have read sounds like dermatitis herpetiformis. I've never had this before!  Feeling miserable, worried and really confused tbh. Would this be normal if I didn't have any intolerance?  Is this what everyone went through?  Should I carry on? I have made an appointment with my GP to get some support but that's a few weeks away. Please she'd some light.  I have read quite a few threads but still my head spins. X