Positive Blood Test negative Biopsy - latent coeliacs?

[tomalger]

Hi everybody I'm new to this board, any advice would be greatly appreciated.

I was sent for a blood test 2 months ago as I'm always tired and really struggle with OCD which has become worse recently, I'm 6 ft 3 and barely 10 stone, and had severe anaemia (about ten years ago but not recently),

I had a positive TTG  test of 16 and thought it all made sense, but the biopsy was completely normal. I've gone gluten free and felt even worse for a bit although this has passed, and if i have any milk I'm struggling too.

What would you advise please? Already getting a bit fed up of paying twice the price for stuff and avoiding everything if its not necessary.

If its latent Coeliac does reducing gluten 99% suffice?

Again any thoughts really appreciated

Best Wishes

Tom 

[cyclinglady]

17 hours ago, tomalger said:

Hi everybody I'm new to this board, any advice would be greatly appreciated.

I was sent for a blood test 2 months ago as I'm always tired and really struggle with OCD which has become worse recently, I'm 6 ft 3 and barely 10 stone, and had severe anaemia (about ten years ago but not recently),

I had a positive TTG  test of 16 and thought it all made sense, but the biopsy was completely normal. I've gone gluten free and felt even worse for a bit although this has passed, and if i have any milk I'm struggling too.

What would you advise please? Already getting a bit fed up of paying twice the price for stuff and avoiding everything if its not necessary.

If its latent Coeliac does reducing gluten 99% suffice?

Again any thoughts really appreciated

Best Wishes

Tom 

Welcome!  

The TTG can be elevated for other reasons though that is not common.  Chances are, your GI missed damaged areas which is easy to do since the small intestine is the size of a tennis court!  If you are feeling better, stay the course.  It takes time to heal and two months is not enough time to heal.   Look at feeling better at six months or a year.  Why?  Most often it is due to learning the gluten-free diet.  If you are lucky (not genetically predisposed to being lactose intolerant), you might get all dairy back or some of it.  Start testing with just yogurt or hard cheese once you really start to feel good.  

Hang in there!  

[tomalger]

Thanks Cycling Lady I will stick with it ?

[cyclinglady]

Try to save money by eating foods that are naturally gluten free (meats, fish, veggies, fruit, nuts, rice and dairy when you can tolerate it).  Avoid processed foods, because most are junk food anyway and are not healthy (e.g. cookies, candies, crisps, etc.).  At this point you want to heal as fast as possible.   Try wrapping your “sandwiches” with lettuce.  

Look over our Newbie 101 section located under “Coping” to get valuable tips.  Most celiacs have some additional intolerances (like you seem to have with lactose).  Look for those too.  For example, I got dairy back, but still can not tolerant onions or garlic after five years (and I have had a repeat biopsy indicating a healed small intestine).  

 

[tomalger]

On 8/21/2018 at 1:55 PM, cyclinglady said:

Newbie 101 

That's brilliant  thanks, the 101 is very useful.

1 final question if you don't mind. I find the almond milk, coconut milk, coffee mate etc still gives me the same dodgy stomach is there anything else i can have for a milk alternative to put in a cup of tea that you think might react better?

Best Wishes

Tom

[cyclinglady]

Have you tried soy milk?  Although some people do not tolerate it, I used it for years when I was lactose intolerant.  

Habits are hard to break, but you could try drinking tea without anything added.  Make sure your tea is gluten free, of course.  I am in the U.S. and drink plain old Lipton (black tea) or the Republic of Tea which is certified gluten free.  

[tomalger]

brilliant thanks very much

[Palvyre]

I found early in my diagnosis that I tolerated cashew milk okay.

[tomalger]

many thanks