Positive blood negative biopsy

[Randommuwa]

I've been trying to get my issues diagnosed for 2-3 years now. When they told me they thought maybe celiacs it was the first thing they looked at that actually seemed to make sense symptoms wise. My blood work came back a weak positive, but as far as I understand a positive is a positive? I just got my biopsy results back and they said there's no villous abnormality so they don't think it's celiacs. I'm so confused. I see people saying biopsies are unreliable and have read cases of people having negative biopsies, then end up having it. Is it possible that I have it and am early enough in where I haven't done damage yet? How reliable are biopsies? What else could cause me to have positive blood work? 

 

Blood work results:

Endomysial Abs (IgA):

Negative 

 

Gliadin Ab, IgA (Deamidated):

My Value: 21.4 U (Weak positive 20.0-30.0)

Standard Range: <20.0 (Negative) U

 

Tissue Transglutaminase IgA Ab: 

My Value: 5.7 U/mL (Weak Positive 4.0-10.0)

Standard Range: <4.0 (Negative) U/mL 

 

IgA: 

My Value: 234 mg/dL

Standard Range: 61 - 356 mg/dL

 

[trents]

Yes, not infrequently do we have forum participants report your same experience with positive bloodwork but negative biopsy. This usually happens for two reasons:

1. People begin the gluten free diet after before the biopsy is done and there is healing of the small bowel lining.

2. Spotty damage to the SB lining such that the biopsy misses the damaged areas and only gets samples from healthy areas. This most often happens at the hands of an inexperienced  clinician or at least one who is not familiar with the irregular patterns of damage that celiac disease does to the SB lining in some people.

May we ask how old you are and how long you have been experiencing symptoms of celiac disease?

Two positives in the blood labs, even if they are weak positives strongly indicates celiac disease.

[Randommuwa]

1 minute ago, trents said:

Yes, not infrequently do we have forum participants report your same experience with positive bloodwork but negative biopsy. This usually happens for two reasons:

1. People begin the gluten free diet after before the biopsy is done and there is healing of the small bowel lining.

2. Spotty damage to the SB lining such that the biopsy misses the damaged areas and only gets samples from healthy areas. This most often happens at the hands of an inexperienced  clinician or at least one who is not familiar with the irregular patterns of damage that celiac disease does to the SB lining in some people.

May we ask how old you are and how long you have been experiencing symptoms of celiac disease?

Two positives in the blood labs, even if they are weak positives strongly indicates celiac disease.

I'm 22. I've been having symptoms for about 2-3 years. I forgot to post my symptoms I've dealt with so It started with acid reflux/heartburn symptoms, then issues with bloating, lack of appetite because everything irritates my stomach, vomiting. Over the last year it's been more intense with constant diarrhea with a yellowish coloring/mucus, cramping/gas. I haven't gone gluten free at all because I saw I needed to keep eating gluten for my tests so I made sure I did. 

[cristiana]

Hello there,

I thought I'd chime in to say that when I was diagnosed I had villous damage and also cramping, gas, diarrhea, as well as gastritis.  My blood results were through the roof (Ttg over 100).

However, a few years into my recovery I some of those symptoms started up again.   

At this point my Ttg was over 80.  I made changes to my diet and lifestyle and it went down to the 40s.   

But I still had bouts gastritis and reflux and so I was given an endoscopy.  A very experienced gastroenterologist performed this and he took many samples.  However, the test revealed there was no villous damage anymore, but the raised presence of celiac antibodies in my villi.   So yes - it is certainly possible to have no villous damage and a positive Ttg.

Hope this helps.

C.

Edited July 12, 2021 by cristiana

[RMJ]

You could go gluten free and see if the antibody levels go down to normal ranges and your symptoms go away.  That would be a good indication that you do have celiac disease.

[Scott Adams]

Given your symptoms, and elevated "weak positive" results, it would make sense for you to go gluten-free to see if it helps resolve your symptoms. I realize that this was your first screening, but this new study is interesting because it finds that most kids with persistently high antibodies in the weak positive range do in fact have celiac disease:

It also makes me wonder how many missed diagnoses there are where people never get another blood test and are told they don't have it with such results?

[QLisa]

On 7/12/2021 at 3:42 AM, cristiana said:

Hello there,

I thought I'd chime in to say that when I was diagnosed I had villous damage and also cramping, gas, diarrhea, as well as gastritis.  My blood results were through the roof (Ttg over 100).

However, a few years into my recovery I some of those symptoms started up again.   

At this point my Ttg was over 80.  I made changes to my diet and lifestyle and it went down to the 40s.   

But I still had bouts gastritis and reflux and so I was given an endoscopy.  A very experienced gastroenterologist performed this and he took many samples.  However, the test revealed there was no villous damage anymore, but the raised presence of celiac antibodies in my villi.   So yes - it is certainly possible to have no villous damage and a positive Ttg.

Hope this helps.

C.

Were you given an explanation for why your numbers were still over 80 after being gluten free for a few years? What were the additional changes you made that got you down to the 40s?

 

I was diagnosed backwards, positive biopsy followed by blood work. I just got the blood work today and it’s greater than 100 ttg with normal range being less than 4. Just trying to make sure I take the correct steps right off the bat to heal the damage that’s been done. 

[cristiana]

9 hours ago, QLisa said:

Were you given an explanation for why your numbers were still over 80 after being gluten free for a few years? What were the additional changes you made that got you down to the 40s?

 

I was diagnosed backwards, positive biopsy followed by blood work. I just got the blood work today and it’s greater than 100 ttg with normal range being less than 4. Just trying to make sure I take the correct steps right off the bat to heal the damage that’s been done. 

Hello QLisa

The problem with my tTg numbers at diagnosis is we had no idea how high they were - just that they were over 100, because that is the NHS lab cut off point here in my part of England.  I've seen people on this forum who've managed to find out their actual tTg levels and they have been well in excess of 100 - perhaps mine were stratospheric?!

My nutritionalist told me at the time that although it wasn't good that my numbers were in the 80s, they could well represent a significant downward trajectory but of course, of that we could never be sure.  I must admit being gutted (no pun intended) at the time as I was trying to be really careful with my diet, and friends who were diagnosed at the same time were less so and yet doing so much better than me.  (I do think it is possible I fall into the super-sensitive coeliac group, as it appears, again from this forum, it is possible to be).

In answer to your question these things seemed to help:

• I stopped taking Floradix, an iron supplement which had gluten in it - I had been taking it for a little while, by mistake, instead of Floravital, which is gluten free.  
• Our oven broke down around that time and we bought a new one with two sections and we turned one into a dedicated gluten free oven.
• I think our old dishwasher was in some way to blame - often when I used plates and cups I noticed a crumby residue which probably contained gluten (yuck).  I started to wash and rinse everything by hand, much to my family's annoyance, as they had to, as well, but that way I could ensure everything was squeaky clean; we then had enough money to buy a new one and we bought one with an extra rinse cycle.  But I'm sure a dishwasher that works well would have been just as good!
• I stopped eating out.
• Here in the UK there is a charity called Coeliac UK.  I subscribed and used their Gluten Free food and drink shopping guide to only buy things that appeared in that, which are tested to be less than 20 ppm.  

And of course,  I kept doing all the things I'd already been doing: I used my own toaster, my own butter, and my family only used clean spoons/knives in jam (no double-dipping). 

The link below also contains other helpful tips.

All these things appeared to help, so I hope they might be of help to you.

All the very best in your journey to recovery,

Cristiana

https://celiac.org/about-the-foundation/featured-news/2016/01/gluten-free-101-need-know/

Edited July 15, 2021 by cristiana

[Harley1997]

I am in the same boat. I have a weak postive igG test but the endoscopy only showed chronic mild gastritis. I've stopped eating gluten officially for about a week now and have lost about 20 lbs. (Was 200 2 weeks ago during biopsy and now 180 lbs) I feel like regarding a negative biopsy to just stop eating gluten already. With me, I had 4 years of severe chronic diarrhea, ADD, severe bloating, pain, and miscarriages . It's better,in my opinion, to just stop. 

[trents]

You mention weight loss after going gluten free but have the other symptoms also improved? You may have non-celiac gluten sensitivity. 

Edited July 26, 2021 by trents

[Harley1997]

Definitely. I don't run to the bathroom 6 times a day and I'm no longer exhausted and in pain every time I eat anything