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Airhi

Is this celiac disease? (sorry, long post!)

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Hi

This will probably be a long post, but I will try to keep things concise! I should preface this by saying I can be somewhat hypochondriac and the anxiety makes me sometimes skeptical of my own instincts

Have had increasing GI symptoms for the last two years.  I have two family members with IBS symptoms and I know stress can flare it up so thought maybe I was developing IBS. I had a few months of being very broke (I'm a postgrad student) and eating a lot of $2 pastries and pork buns, cheap bread etc. and during that time my symptoms got a LOT worse. My symptoms were bloating, gas, D, and a feeling of my abdomen being very tender. This was worse after eating a big meal or drinking a cold glass of water, and would start ok but get worse as the day went on. I was unable to wear many of my clothes and mostly wore loose dresses. I cut out wheat(but not gluten), dairy and eggs as these are known to be common triggers for food intolerances, I also avoided foods like beans, garlic and cabbage that I know can cause gas. I was resistant to the problem being gluten as I know it can be a fad, lactose intolerance or IBS seemed more likely. I felt a bit better after cutting these three things out but not 100%, and still had a tender tummy a lot of the time. Eggs turns out is no issue although dairy was, I do not consume any dairy anymore. I then reintroduced wheat by eating one toasted slice of brown bread at breakfast for one week. After three days I felt MUCH worse, my abdomen felt very tender and hurt if I walked too quickly.  Seeing wheat is obviously an issue, I started to read more about food intolerances and celiac disease.

After one week of eating the toast, I went to see a GP through uni, I explained my symptoms and that I had family with IBS, and I thought that it may be to do with gluten but wasn't sure. She said that because my previous iron levels test was ok I probably didn't have celiac disease but ordered a Celiac Serum and iron levels count. My celiac serum came back as "unlikely", and blood count, ferritin and B12 as mid or normal ranges. I decided to try going gluten free anyway. After a week or so with no gluten, I felt a lot better. The symptoms came and went but as I got better with checking for gluten the symptoms seem to be consistently kept at bay. 

What has made me write this post is that on Friday I ordered a gluten free burger from a takeaway place for lunch and also ordered fries. I had doubts about the fries as I know there can be CC from the oil but thought I would risk it as I don't have a celiac disease diagnose and felt too hypochondriac to make such a fuss.  I just thought, "don't be so precious, you do not have celiac disease, you're just anxious!" I felt fine for a few days, but last night (Tuesday) felt a pang in my tum in the evening. I felt a bit bloated after dinner but fine in the morning, went out for breakfast and about 15 mins after eating had to run to the loo. Feeling symptomatic all morning: nausea, tender/bloated abdomen, foggy brain as well as emotionally miserable, back to where I was pre-gluten-free diet.  My thesis is due at the end of next month and I can't afford a few days off feeling yuck and not being able to concentrate.

My questions are... does this sound like celiac disease? Is it normal for it to take so long for symptoms to show after eating G? I don't think it could have been anything but the fries as I keep a very careful food and exercise diary and very rarely eat out. How long do I have to eat gluten for before I get the celiac disease test? Should I ask for a specific test? How relevant/accurate were the previous tests? I am very cautious about this mainly because I can tend to be hypochondriac and have suspected myself of many illnesses before but wondered if celiac disease would explain some of the "imagined" symptoms I've had for years like tiredness, sleepiness, light-headed, brain-fog, etc.

Edited by Airhi
brevity

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Welcome, @Airhi! :)

You're right, your posting is quite long, so after awhile I scrolled to the end to find your questions.  The only way to know whether you have celiac or not is to be tested, which includes blood tests and an endoscope.  There are over 300 symptoms of celiac disease, but it can be present with no symptoms at all.

I urge you to continue eating gluten and to call your doctor about testing. In order for testing to be accurate, you must consume gluten daily for 8-12 weeks prior to blood testing, and two weeks prior to an endescope. These easiest way to comply with this is to continue eating gluten until all testing is complete

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i am presuming you are in the UK  they have done the testing that that they are going to do.  you will need to go private.  i would wait till after your thesis is done.  good luck.

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What blood tests were specially included in your celiac serum? Was it only just the  ttg iga test?  Then its possible that this could be unreliable if you are IGA deficient

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Hi thanks for the replies. I am in NZ, I was just told it was a "celiac serum" test so I'm not sure exactly what they were looking for our how broad the test was. 

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