Driving myself crazy and getting more confused

[Nicki C]

Hi everyone,

I have found this forum really helpful  and I am hoping that you may be able to offer some insight on my blood results.I will try and give a quick story on my history/ symptoms but it's not very cut and dry, so sorry it's so long. 

I was diagnosed with fibromyalgia in 2006/2007 but I never agreed with that diagnosis. I was in a really stressful job and following my diagnosis I changed jobs and I improved so I put it down to stress. But I also changed my diet as I had put on so much weight so I was probably gluten free for a time. Since then I have been pretty ok, with times that I'm not as good, but not really bad like I am now. My diet has varied but I am always at my best when I get a little healthy eating obsessed ( and I always stop eating pasta and bread then). 

I Started to feel really unwell in 2020 (eating lots of sandwiches and pasta), prior to this I was working full time and exercising at the gym 6-8 hours a week ( more in annual leave). I have a long list of symptoms that vary. These include headaches, lots of burping, stools that float, constipation, nausea, abdominal pain, fatigue and brain fog. The fatigue and brain fog are the most constant and troubling symptoms. 

My father has an autoimmune condition and I was concerned it was autoimmune . I was reviewed by a rheumatologist and requested coeliac test as well on the advice of a colleague.

my results are as follows

TTIgA 12 (0-6.99) interpretation positive

ANA 1:80 speckled

Vit D 39 ( 25-120) insufficient 25-50

endomysium IgA Abs positive

The rheumatologist stated coeliac but advised to continue eating gluten until gastroenterology review. I would have to wait until the end of July for a NHS review ( which would be by phone) so I see a consultant privately today. 

He stated that my bloods weren't very high for coeliac and that he could either do a gene test or endoscopy, but advised the endoscopy. He said he was 50:50 as to whether I could have coeliac or not.

I was not happy to be diagnosed with coeliac but at least I could get better by following a diet. Now I'm more confused as I thought my bloods were more indicative of coeliac.

I have decided to go for the endoscopy, which will be next week but now I'm starting to question whether I made the right choice. Would it have been better to have the gene test? He  said the endoscopy was approx 90 % accurate, so now I'm worrying about the 10%

I Would really appreciate opinions on my blood results and thoughts with regards to the endoscopy.

Thank you

[trents]

The gene test does not prove anyone has celiac disease. It just establishes the potential to develop celiac disease. To get active celiac disease you need the genes plus some triggering stress event, like a viral infection. A high percentage of the population have one or more celiac genes but never get celiac disease. The endoscopy would be a wise move. But the fact that you are positive with the tTG-IGA and feel better when you back off of bread products says a lot to me.

[RMJ]

The endoscopy is a good choice.  Be sure to keep eating plenty of gluten until then. 

Please let us know the results!

[Nicki C]

Hi everyone,

I have received my endoscopy results and coeliac has been confirmed. Biopsies from the first and second part of the duodenum we're positive. 

I asked the consultant about marsh scoring and he said the damage was shown in all areas but didn't give me a score. 

He printed the biopsy results which appear to show one part more damaged.

The results are as follows

D1- moderate villous atrophy and this is associated with increased intraepithelial lymphocytes in the villi and increased lamina propria cellularity.

D2- the overall villous architecture is normal. There is moderate increase in intraepithelial lymphocytes and mildly increased lamina propria cellularity.

D1 & D2 consistent with coeliac

Please could someone interpret how severe the damage is.

 

Also I feel really let down by the doctors as I think the diagnosis of fibromyalgia in 2006/2007 was wrong. I have been gluten light, gluten free ( only because of really healthy eating/ clean diet) since the fibromyalgia diagnosis but never made any connection to gluten but hindsight is a wonderful thing. I feel that as I had that diagnosis the doctors did not take me seriously and I have had a battle. When I went with abdominal pain the doctor said " you came to us with this pain in 2008 and it went away" I only went as the pain was really severe, and didn't bother with all the mild stomach pains, nausea etc. I had been progressivly getting worse since 2020 and only kept going back to the doctors as I have been so unwell with so many symptoms.

I would like for my 2 sons to be screened but I don't trust the doctors to do the correct blood test. It is also NHS so I'm not sure what the usual tests the GPs should do.

Please could someone advise on the blood tests I should get my son's to request.

I went gluten free as soon as I had the endoscopy and am already starting to feel better, but I know it's a slow process and I am really thankful for this forum as it has been so helpful and informative. 

 

[trents]

How old are your sons? There are some tests that are indicated for children that might not be as necessary for adults.

You might also consider ordering a home celiac test kit from a company like Imaware. The cost is about 100 USD.

Your story of misdiagnosis going on for years echoes with many of us on this forum. It is typical, actually. I developed elevated liver enzymes in my mid 30's. My GP ran all the usual hepatitis tests and they were negative. Finally, he said to me, "I don't know what is causing this. Maybe it's just the way your are." It was then that I scheduled my own appointment with a GI doc who immediately tested me for celiac disease which was positive. Within a few months of beginning the gluten-free diet the liver enzymes were back to normal. In researching this later I found out that about 18% of celiacs experience elevated liver enzymes. It took 13 years to get a diagnosis from the onset of elevated liver enzymes. There is still an appalling lack of awareness and knowledge of gluten-related disorders in the medical community at large. That's why this forum is so valuable.

[Nicki C]

My sons are 21 and 26. 

 

 

[trents]

I would order the following tests:

• Total serum IGA
• ttG-IGA
• Deamidated gliadin peptide (DGP IgA and IgG)

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Nicki C]

We will request those bloods.

Thank you.

Also, another question. I know coeliac can occur and be diagnosed at any age but as I mentioned I think I have had coeliac for years, definitely at my fibromyalgia diagnosis and probably since childhood. My mum said I always had stomach aches as a child and also once I got my coeliac diagnosis she reminded me that she always told me bread and pasta didn't agree with me, which she did but as I was always gluten free/ gluten light at times I was eating really really healthy I stupidly didn't make the connection.

If my sons test negative now does the risk of them developing coeliac reduce or increase as they get older?

Is it the poor diagnosis that leads many people to get diagnosed later in life and they have probably had it for many years, or is there actually a high number of people that develope it later in life?

 

[trents]

You asked, "If my sons test negative now does the risk of them developing coeliac reduce or increase as they get older?" I would say the risk would increase with time, based on the fact that the risk of most health problems, including autoimmune diseases like celiac, increases with age.

You asked, "Is it the poor diagnosis that leads many people to get diagnosed later in life and they have probably had it for many years, or is there actually a high number of people that develope it later in life?" I think it's a lot of both. I think many people teeter on the edge of celiac disease in their younger years but their immune systems are strong so the disease is partially held at bay and testing may be negative. They may have periods where the disease breaks through alternating with what seems like periods of remission. Eventually, it sets in for good and they start to develop lasting, chronic symptoms that leads (eventually) to a diagnosis. My opinion in this matter is not necessarily based on research findings but on my own personal experience and also my impression as an active participant/moderator on this forum who has heard the personal experiences of hundreds of forum contributors over quite a few years.

I'm thinking it might be a good idea to have your sons get some genetic testing done for celiac disease potential.

Edited May 28, 2022 by trents

[Nicki C]

Thank you.

That makes perfect sense to me. I have been so unwell over the last 2 years. It's like my body just couldn't cope anymore and I kept getting worse and worse with various symptoms, but looking back, so many things now make sense.

I will ask the GP to check for coeliac genes as well, at least if that's negative I know they won't develope coeliac later in life.

As my youngest son is most like me, it wouldn't surprise me if he is positive.

Any thoughts on my endoscopy ? As they used the word moderate I'm thinking it's not damaged too much

Thank you so much. 

 

 

 

 

[trents]

Not having neither of the genes that so far have been identified with celiac disease may fall short of a guarantee that your sons will not develop celiac disease. It looks like researchers are on the verge of identifying other genes that might be involved. And then there is always the possibility of NCGS which is 10-12x more common than celiac disease. Some experts feel that NCGS can be a precursor to celiac disease.

[RMJ]

I’d say the damage is moderate.  You still have villi and in some areas they are normal. In severe damage there is complete villous atrophy.

I’m glad you have a definite diagnosis and were diagnosed before it got any worse!

[Nicki C]

So it might be best to get the coeliac screen done and consider genetic test at a later date.

Neither of my sons have what appears to be a reaction to gluten, but neither did I. I never made any connection on eating gluten.

My youngest eats loads of gluten, but he's similar to how I was when I was younger. He had a period of ongoing headaches when he was about 15 and had MRI which was all clear, doctors put it down to stress. Stomach aches and nausea on and off but never bad enough to go to GP.

 

[Nicki C]

Thank you RMJ, that's what I thinking.

So hopefully it will heal quickly