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Celiac postive anti ttg negative biopsy

Posted , 3 users are following.

jodie249
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.

1 like, 6 replies

6 Replies

  • APH
    APH

    Posted

    Hi Jodie,

    So sorry you have been having such a time of it! I cannot comment on your blood tests - I am not a health professional - but a question you may want to ask is if you have microscopic colitis? It may account for some of your symptoms. I am waiting to have my endoscopy in three weeks time to rule in or rule out coeliac disease. My Consultant thinks that I may be intolerant to gluten so once I have had the test I am going gluten free to see if I can get some control and not have to take so much medication. If you google "The Potty People" you may find some useful information and advice. It is an online forum for MC and I have found it so useful. I have advised both my GP and consultant of the site and I bought my consultant the book that has just been published on MC - and stress is a major factor!

    I hope you get some answers!

    APH

  • robert85
    robert85

    Posted

    Hi Jodie

    I was diagnosed ceoliac 20 years ago.but I still had symptoms till 5 years ago when I went on the Hay

    diet (keeping protein separate from carbs ,potatoes,bread ect). this worked for me,loan a book from

    the library .

    Give it a try you might be amazed I was.

    Robert,

  • clarebear1976
    clarebear1976

    Posted

    Hi

    I am having similar problems with my son. He is 10. My 12 year old daughter has coeliac and has been since she was 6. Callum was getting bowel problems etc so I sent him to the docs and time after time he had negative tests but a high allergy count. He has had two endoscopies and colonoscopies both showed some inflammation to the bowel but that could be down to inflammatory bowel disease. He has had an EMA test that is negative and all the ususal coeliac tests. You should ask for the HLA status gene test this will tell you if you have the gene. My son may well have the gene waiting on the results but due to neg tests etc, he has characteristics of latent coeliac too, so its possibly sitting there waiting for a tigger to be honest that may never happen. However he will be screened regularly. He went on a glutn free diet but there was no improvement so because there is no positives etc etc he will not be on a gluten free diet just yet. My neighbour thinks she has coeliac but put herself on a gluten fee diet which helped and is too scared to be tested properly as her body will have a nasty rection if they do a gluten challenge. Good luck

  • clarebear1976
    clarebear1976

    Posted

    To be honest if you have coeliac you will need to go gluten free, I know its hard, a very hard change to you lifestyle but the consequences of staying on gluten doesn't bare thinking about, everyone gets tummy problems from time to time, it may not just be coeliac, it could be anything. Also, IBS often gets mistaken for coeliac disease. If you have it it is paramount you stick to the diet and avoid cross contamination. There are great breads, biscuits etc out there now. You can still eat out. If I can do it, so can you, go girl x
  • clarebear1976
    clarebear1976

    Posted

    Sorry to go on, my daughter was 6 when she was diagnosed and that was through a blood test showing anemia and my doc thought lets test her she prob wont be coeliac but she was 39 her results were. She is 12 now. She had no symptoms like you would expect from something gastro. So please please think about this carefully. Coeliac UK are fab!
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