Advice needed: Positive anti ttg negative biopsy testing ongoing since 2009

[jodie249]

I first began testing for Celiac in June 2009.

I had become very ill, I had vomited just the once. Everytime i ate it went straight through me and I lost a stone of weight in a month.

I went to the doctor as my weight loss made me very underweight. I had a blood test which came back with Anti ttg levels 4 times higher then they should be, an inflamed liver and abnormal thyroid.

After a few weeks i went for an ultrasound on my liver as well as another blood test.

The ultrasound showed my liver was normal as did the blood test.

My ttg levels were still high and my thyroid still abnormal.

I also went for an endoscopy which came back negative.

This particular doctor diagnosed me with lactose intolerance and left it at that.

I was not happy with this diagnosis as i’ve never had a reaction to milk or any other dairy. My GP also didn’t seem convinced and put me on 3 monthly blood tests.

When i went for the first 3 monthly blood test my thyroid seemed to have come back normal but my ttg levels were still high my doctor called me into the office and asked how i was feeling and at the time i was not symptomatic.

I was then put on 6 monthly blood test for the next 2 years.

I was only being tested for full celiac panel, Iron and some vitamins and full blood count.

Everything came back normal except the anti ttg which at it’s lowest result was still double of what was considered ‘normal range’

AS i was not having symptoms all the time my doctor said he would stop the bloods and just leave me be as It may be latent celiac. I was instructed to live normally and only return if symptoms came back.

In 2012 I’ve been back to the doctors twice for this the most recent was last month when my celiac symptoms came back in full force, they took my bloods and again blood count was fine and i showed no sign of malnourishment other than weight loss but the pesky ttg was still triple as high. My GP has now said to go gluten free or put up with the symptoms.

Again not happy with this result, I do not want ot have to go gluten free if there’s not a need I did lots of research and I am not at a point in my life where i want to read every food label or not eat out with friends if i don’t have to.

So my question is what is wrong with me?

If it was celiac surely I would have symptoms all the time.

Yes i have trouble with bowel movements now and again but who doesn’t, and I’ve always suffered with bloating but then so does my partner.

At present I’m in the middle of another ‘flare up’ So far 8 days now. I’ve not been bloated so much abut have been eating less as i’ve lost my appetite. I’ve lost 4lbs in 1 week (at my current weight this is a lot to lose in a short space of time) I’ve got stomach cramps almost all the time. And bowel movements have been much more frequent and much less ‘stable’

I’m under a lot of stress at the moment so not sure if this would cause a flare up.

I’ve tried googling as to what other reason would cause me to always have high anti ttg levels but have not yet found any conclusive answer, surely it can’t be just ‘normal’

Also to add my mum suffers with stomach problems but the doctor diagnosed her with Irritable bowel syndrome.

Any advice welcomed.

[FionaGFG Administrator]

OK I suggest you see your GP and ask for blood tests for:

- coeliac gene test

- IgG and IgA test

- EMA (Endomysial antibody)

- B12

-Vitamin D

- Folate

- Calcium

- Thyroid Peroxidase Antibodies (TPOAb)

Unless your Dr has asked you to do a lactose breathe test I fail to see how they have diagnosed you as lactose intolerant.

Your symptoms could well be coeliac as many people appear positive on the Ttg blood test but depending where they take the endoscopy from - it can come back negative even when someone is actually positive. Remember the diagnosis for coeliac disease is completely flattened villi - if you are being tested in the early days of coeliac disease it may appear 'negative'.

I've recommended the tests above as the EMA and IgA and IgA in particular are always recommended tests for coeliac disease alongside the antibody test you have already had.

The gene test is rarer - it will only help give an indication of whether you carry the genes for CD not confirm if you have it. But combined with the other blood tests helps to build up a picture of what is going on.

It is common for coeliacs to have elevated liver enzymes and the symptoms you have mentioned. You would not be feeling ill every day if you have coeliac. In fact sometimes the reverse - the worse the damage in the gut often the less the symptoms - may coeliacs are only diagnosed due to low iron, folate, vitD, B12 which is this investigated further.

Anyone with a history of thyroid problems is 3 times more likely to have coeliac disease.

If I were you I would try and pursue a diagnosis. If you come off gluten now - as you say it is a hassle - and you'd have to go back on it for a real coeliac diagnosis that Drs would recognise now and in the future. So I'd ask your Dr to run these tests as a last resort and explain you have no problems with dairy. Ask what else could be causing your problems if not Coeliac?

BTW - IBS is often diagnosed when someone in fact has coeliac disease.

If you do have coeliac disease you are at higher risk of other life long auto immune diseases , osteoporosis, stomach cancers, diabetes and infertility problems. So it's well worth getting to the root of your problems.

[Mia1057]

Actually your story sounds very much like mine in the beginning abnormal blood tests, some bloating and occassional large flare ups and in the end my doctor sent me to the gastroenterologist who did the biopsy and found my villi completely flattened and confirmed coeliacs. I wish I had pursued it more when I was less symptomatic as now I have osteoporosis and other auto immune diseases. CD can be quite a silent disease with just occasional big flare ups not worth taking the risk

[Liana]

Have you discussed IBS with your doctor? If it runs in the family and your problems are made worse by stress, it might be worth investigation.

[Falk1]

I was the opposite to yourself, having been diagnosed at 16 months old - I am now in my 60's!!! However in those days they didn't realise that Coeliac once diagnosed is for life. I eat normally from aged 12 till I was 40 when I was rediagnosed as they thought I may have bowel cancer. I told the specialist I had been coeliac, but because I was overweight, already 14 stone and tall, (young coeliacs often don't thrive) and had high colouring - everything a coeliac isn't. After six months of tests I was eventually sent for an endoscopy which confirmed I was very definitely coeliac. I have been back on the diet for 25 years and am fine. Even though I am coeliac it doesn't stop my husband and I going out for meals and seeing friends. Food is much easier to obtain, and lots of help is available at local groups and the coeliac society. Keep on badgering the doctor to get your diagnosis and ask to be referred back to a gastroenterologist. Good luck.

[1stgls]

my feelings on this;; if by going Gluten free makes you better why are you being stubborn ? it sounds as if you are quite ill and, if by reading labels for 3 months tells you exactly whether or not it is coeliac it is worth the try -- you say you are not at the stage in your life to be reading labels and refusing invites out ---IF you continue with being so ill you will not be well enough to do ANYTHING at all, your quality of life will disappear and if it is gluten intolerance there is only so much damage your body can repair from this,,,,,with all the love and respect for you and your own choices--- GET A GRIP--- try being GF you will only have a slight inconvenience which may save your life

( I did not have flattened villi but am reaping the rewards from being GF)

[Laura78 in reply to 1stgls]

Good to see a bit of tough love here - I totally agree!

I had a lot of the back and forth with tests and being undiagnosed then took it on myself to become 100% gluten free and lot of horrible symptoms have diminished altogether although not perfect. I'm in it for the long term - i've only been truely gluten free for about 9 months and I have decided that this is the way i eat and i like it. If you cook your own food from fresh ingredients then there are no labels to read nothing to trip you up - you are trying to avoid the fact. I'm afraid you'll possibly get more ill and not really ever get to the bottom of it. Gluten is a problem for a lot of people if they choose to deal with it or not is up to them but you do have a choice. even if you don't think it's gluten you could try being off it for a few months to see if you get anywhere and then make your decision,

All the best.

[jodie249]

The tests mentioned in the first comment:

- coeliac gene test

- IgG and IgA test

- EMA (Endomysial antibody)

- B12

-Vitamin D

- Folate

- Calcium

- Thyroid Peroxidase Antibodies (TPOAb)

Are the standard ones i've had from what i can remember from the doctor all the other celiac tests like the EMA IgG and IgA were normal. I've not had a the gene test. My mum was tested for celiac but her bloods came back negative. and all my vitamin levels are fine so surely if i had any problems with my villi there would be a small sign of lower vitamin levels?

Most of the time i feel fine, this flare up has started going away now (after almost 2 weeks) I have a lower appetite but think that is due to cutting down on food in general. My stomach gets a bit gurgly after i've eaten and some mild stomach aches now again but nothing too bad now.

I feel awkward going back to the doctor incase they think i'm a hypochondriac especially since my GPs answer last time was just 'sometimes people have antibodies and it means nothing but if you want to go gluten free you can' what kind of answer is that? surely having 'anti self antibodies' is not normal.

[FionaGFG Administrator in reply to jodie249]

Yes it is odd that the Dr says 'sometimes people have antibodies and it means nothing but if you want to go gluten free you can'. It's understandable that you want to know what is going on before you commit to a gluten free diet. As suggested earlier - go see your GP and discuss these points. It may well be that you are gluten sensitive - a new condition that has been researched in the USA + Italy that is the pre-stage before full coeliac disease. However, only by discussing your concerns can you make the right choice for you and your health. As I've mentioned many times before the problem with going gluten free without a full CD diagnosis is that if you feel better you'll be loathe to ever go back on it to get confirmed as a coeliac. Also people who have just gone on the GF diet without a CD diagnosis often have many problems when seeing other Drs for medical issues in the future - ie they don't believe that you have an issue with gluten as there's no proof you do so they doubt other medical concerns you raise. As we've also mentioned before many people face the same issues you have and then discover years later that they actually do have CD - the villi are then flattened. So it's really a case of discussing the pros and cons of going GF with your Dr (inc getting accurate info on what to avoid as in hidden gluten ie in ice cream, soy sauce, frozen veg etc). Only then can you make an informed decision. And in no way do we think you're avoiding the issue - you've flagged a topic that many others face in this group as wel.

[benjac64]

Diagnosed with IBS and told to live with it was thehospitals recommendation no assistance with how to deal with diet etc... they unfortunately would rather prescribe instead of finding the route cause of the problem.

Unfortunately GP's are not very knowledgable on CD and GS, I have had endless visits to the GP recommending to him what I should be tested for all of my test for CD came back negative (and I have had 3 endoscopes).

I was 36 when I started having all these symptoms. Eventually I self diagnosed that gluten and lactose was my problem and decided to go free from and feel so much better even putting weight on from size 8 to size 12. It maybe a pain to look at labels but it does get easier and you maybe be preventing any real damage to your body in the future. Also to note as I understand it once you are diagnosed with CD it affects new life insurance policies you may wish to take out. If you get no real diagnosis and still get the symptoms go gluten free for a set period of time keep a diary of your symptoms it has taken at least 2 years for my gut to feel fully recovered.

Hope this helps

[1stgls]

If you go GF and improve your dr should be pleased that you are becoming a healthy human being ( that is the reason for him becoming a dr!!!) .. If it is coeliac you will have your ups and downs but the effort is truly worth it--- and to be quite honest "bubbles" to him!!!! you and only you are responsible for your health and well being