Chances of coeliac?

[LC9]

Looking to find out opinions on whether I could have coeliac disease.

It is a bit of a long story so I'll try and condense it!

I have 18 year old twins who, within 2 weeks of each other, were diagnosed with majorly severe anaemia and required immediate hospitalisation for blood/iron transfusions. This was then followed by a number of tests which identified Coeliac Disease for both.

While this was going on one of the nurses became worried about me and recommended that I get a blood test too. Went to the doctors and discussed all the symptoms I had (which I had dismissed as being a 50 yr old perimenopausal woman) - severe brain fog, aching joints, anxiety, poor sleep. I have also suffered with horrendous heartburn/indigestion for a while now and have been on omeprezole. Doctor said that these could all be related to anaemia.

Blood test came back showing hb 75 and ferritin 3. This resulted in iron tablets and lots of testing to find out the cause.

Coeliac bloods came back negative. QFit (stool) came back negative. Sent for endoscopy (which was I believe was just checking for bleeding as no biopsies were taken) and this was also clear. Within a month my bloods showed hb 109 and ferritin 25 but I still had lots of symptoms as well developing a lower left abdominal ache. 

The more I looked in coeliac disease (to support my children) the more I recognised many of the symptoms so I decided to do a DNA test to check for the coeliac markers so it could be ruled out. It has come back as low risk but I have halpotype DQ2.2.

Last week I had more bloods and today I was told that they are 'satisfactory' but the ferritin levels are still low so I need to speak to the doctor again.

Do you think I should be pushing for more investigation into coeliac disease? I don't appear to have any of the other 'red flag' symptoms for something more sinister but all of this has happened in the space of 3 months and it's all really beginning to worry me. I don't know if I am just trying to convince myself that it is Coeliac so I can ignore the fact it may be something else.

[trents]

Welcome to the celiac.com community, @LC9!

I take it from the way you spell "coeliac" that you are in the UK.

One question to begin with. Had you reduced your gluten intake before the specific tests for celiac disease were run?k

A second question. Can you provide us with the names of the celiac specific tests that were done? There is a certain test that should be run, but often isn't, to check for IGA deficiency. The main celiac specific test that doctors use is the tTG-IGA. However, if a person is IGA deficient, this test will not give accurate results.

Edited Monday at 06:00 PM by trents

[LC9]

I wasn’t gluten free but also was not consuming large amounts of gluten - very little bread / pasta etc. 

I'm unsure of the actual coeliac test numbers/results. We get our results via  the receptionist at our doctors surgery and all I kept getting told was that it was negative. My endoscopy report has some history on it and just says -ve TTG.

[cristiana]

Hi LC9

Welcome to the forum.

You are not the first person I've come across who was sent for an endoscopy but no biopsies were taken.   I vaguely remember someone on this forum had the same thing happen to them, and another friend of mine who is unable to eat gluten was sent for one and they just looked with the camera! I found it extraordinary, but it does happen.  It is very frustrating for people in this position as no-one has endoscopies for fun!

Given that your twins have been diagnosed and you have these symptoms,  I think in your shoes I'd probably first want to double check no biopsies were actually taken.  In the UK where I live biopsy results can take quite a while to be reported back to the surgery/patient.   I think mine took a few weeks.  Also, not sure if you live in the UK too but if you do, unfortunately all sorts of issues are occurring at the moment within the overburdened NHS and all sorts of things can go missing, such as referrals, test results etc. 

But if you are absolutely sure that no biopsies were taken, I would have thought that would be the next step?  Do you agree, @trents?

Cristiana

Edited Monday at 07:21 PM by cristiana

[trents]

Often, biopsies are not done unless there are positive blood antibody results. Biopsies are often a "reflexive" medical order, meaning they are prompted by positive results from other kinds of testing. 

@LC9, low gluten consumption can sabotage celiac blood antibody testing, as can, as I have already mentioned, being IGA deficient. In either case, it would be helpful to get IGG blood antibody tests run instead of the default IGA. I will attach a primer outlining the various tests that can be ordered to detect celiac disease.

 

 

[knitty kitty]

Hello all!  

@LC9, I think further testing for Celiac Disease is warranted, especially since you have the genes and still have symptoms even on a low gluten diet.

Omeprazole is a proton pump inhibitor for acid reflux, but it is also an immunosuppressive.  This means that your immune system is suppressed, and you are not going to make as many anti-gluten antibodies, which can account for your negative blood tests. 

Anemia affects red blood cell production, but also white blood cell production, which can affect antibody production, and can result in false negative blood tests.

Do discuss with your doctor discontinuing the PPI Omeprazole and undergoing a proper gluten challenge where a minimum of ten grams of gluten is consumed daily for a minimum of two weeks.  A slice of white bread has about 1.5 to 2 grams of gluten.  Less than ten grams will cause symptoms, but will not get the antibodies to move out of the intestines, where they are made, and into the blood stream, where they can be measured in testing.  

Do get the complete panel of tests as @trents said.  Do get an endoscopy with biopsies as @cristiana said, because a great deal of the changes are microscopic and look "normal" with the naked eye.  

Do get checked for nutritional deficiencies.  Iron deficiency anemia goes hand in hand with Vitamin B 1 Thiamine deficiency.  All eight B vitamins, Vitamin C, Vitamin D, and some minerals like magnesium and copper are also low in people with anemia and Celiac Disease.  

Wishing you well on your Celiac journey! Cheering from the sidelines!

[cristiana]

I have a good friend here in the UK who had negative blood tests but her symptoms were such that her gastroenterologist strongly advised that she had an endoscopy with biopsies taken from several sites to absolutely rule out coeliac disease.  

He was particularly keen because her father was a coeliac. 

It turned out that she did not have any villous atrophy in the end, so coeliac was ruled out.  But she fares a lot better off gluten so she tends to avoid it most of the time.  

However, for those of us who are coeliacs strict gluten avoidance is absolutely essential, so before embarking upon such a strict diet a lot of people like to be absolutely sure they have actually got it!  It is a big commitment.   It is also worth noting that if you are living in the UK, there are many benefits to obtaining a proper Coeliac diagnosis as the NHS provide considerable support (such as annual blood tests to check for compliance and complications, DEXA bone scans, additional vaccinations where warranted, in some areas prescriptions to help with the cost of gluten-free staples), so I would say it would be worth going the extra mile in getting biopsies taken to see where you stand.

Cristiana

Edited Tuesday at 09:54 AM by cristiana