Celiac Or Not?

Dozey · April 25, 2013

Hello, I have been feeling ill since the begining of last year, which I put down to bereavement stress. i was waking every morning with vomiting white foam, for around three hours, and axiety/ panic attacks. I got steadily worse and had a blood test for anaemia in March.I was told the results were normal, but by November was bed bound, almost passing out whenever I stood up. I had also been having periods of intense lower abdominal pain and diaohrea, usually late at night or in the early hours, also some nausea. A doctor was called who reviewed my notes and said I had very low b12 level. I had my loading doses and one top up injection. I was also diagnosed with pernicious anaemia. I haven't felt much better and have spent all my time bed/sofa bound with just brief walks out when able. I have anxiety and agoraphobia. I feel very fatigued, and have bone pain, and general malaise. There has also been tingling, burning in my hands and feet, and some numbness which now seems to be clearing. However I feel very spacey, almost unreal a lot of the time. My stomach is constantly grumbling and I feel uncomfortable.

I recently saw a different doctor who said with my b12 level now raised I should be feeling better and I have to have tests for vitamin D deficiency and celiac disease next Monday. I had a Tissue Transglutamin test last November which was - negative. - If pretest probability coeliac disease.

Could anyone tell me what that means please. I know the negative means not coeliac but not what the rest means. I also understand that a negative result can be false, but I really can't face an endoscopy. Are there other tests that could be done? Thank you

Celiac Mindwarp · April 25, 2013

Hello and welcome to the board

For blood tests to work most accurately you need to be eating gluten regularly still. I am sure someone else will pop in with the full list to request to have the best chance of getting accurate results.

Apart from the biopsy, the options are genetic testing, which tests if you havethe genes most commonly associated with celiac, but is not a yes or no answer, or trying a strict gluten-free diet for a few months.

The biopsy probably isn't as bad as you think, lots of people say that here after worrying about it.

Your symptoms certainly could be celiac.

wg

One other thing to consider is that you may test negative, but have non celiac gluten intolerance. This has very similar symptoms without tthe villi damage. It can be very debilitating too.

The treatment for both is the same, gluten-free diet.

Ask lots of questions and read around the board.

Good luck

Dozey · April 25, 2013

Thank you for your quick reply. I forgot to say I am 60 years old and have suffered with hypothyroidism for many years. I lost a stone in weight over the last year through lack of appetite, and despite a slightly better appetite I can't seem to put weight back on.

Dozey

pricklypear1971 · April 25, 2013

Thank you for your quick reply. I forgot to say I am 60 years old and have suffered with hypothyroidism for many years. I lost a stone in weight over the last year through lack of appetite, and despite a slightly better appetite I can't seem to put weight back on.
Dozey

If your hypothyroidism is Hashimotos Disease, you already have one autoimmune disease and are at increased risk for a second - like Celiac.

You warrant a complete and thorough work up for ALL autoimmune diseases.

Read these fact sheets and discuss this with your doctor. I hope you get the help you need to feel better. Open Original Shared Link

Dozey · April 25, 2013

Thank you. I don't know if it's Hashimoto's.. I was just told I had an underactive thyroid all those years ago. The new doctor said it was because of the hypothyroidism that he wanted to test for celiac. I will have to ask him when I go for the results.

pricklypear1971 · April 25, 2013

Thank you. I don't know if it's Hashimoto's.. I was just told I had an underactive thyroid all those years ago. The new doctor said it was because of the hypothyroidism that he wanted to test for celiac. I will have to ask him when I go for the results.

It sounds like your doc is a bit more up to date on research than most! Great news for you.

Proceed with testing (and find out if you're Hashis).

Dozey · April 26, 2013

Thank you pricklypear. I hope this doc is more on the ball than the last surgery I was at. They waited two and a half months before telling me I had a very low b12 level, and only then because I was so ill My husband had to call a doctor.

I am a bit torn at the moment. Obviously I don 't want celiac, but if I have it at least I will know what's wrong with me and why I feel so ill and tired all the time.

Dozey · April 28, 2013

Oops, that was supposed to be I have lost 4 stone in weight over the last year!

Celiac Mindwarp · April 28, 2013

Sudden unexplained weight loss sounds like it needs investigation.

Three things which spring to mind are thyroid, celiac and diabetes.

I am sure others will have suggestions.

Dozey · April 28, 2013

Sudden unexplained weight loss sounds like it needs investigation.
Three things which spring to mind are thyroid, celiac and diabetes.
I am sure others will have suggestions.

Thankyou. I have seen a gastro ( last November)who was satisfied my weight loss was due to anxiety and lack of appetite. Due to the extreme anxiety at the time and agoraphobia, ( the hospital is 23 miles away) i couldn't have the endoscopy and couldn't cope with that now. I am working on the agoraphobia with the help of my husband and son, and was due to start CBT a couple of weeks ago but it got cancelled at the last minute due to the therapist being nervous about visiting in a new area!