Symptomatic but also not?

[Cassie5016]

Hello 👋🏻 

I’m 34 and for 2 weeks I had constant, strong stomach cramps (no other symptoms) which was a big red flag as I’ve always had pretty good health, no issues at all.

I went to the doctor and they took blood, urine and all the tests. It was so bad though I drove to urgent care as I’d never been this sick for so long before. I felt silly going in because there were kids everywhere needing help and I just had a stomach ache so went home and just delt with it.

My parter is coeliac so I thought I’m just going to cut dairy and gluten and see what happens. After a day and a half I felt almost normal again.

I booked another appointment with my doctor after about a week to get my blood results as I knew something was seriously wrong.

anyway my results came back as

deamidiated gliadin IgG as normal

tissue transglutaminase IgA as 719cu and the normal is meant to be <20??? 😕

Ednomysial IgA positive 

I’m in Australia so results might look a bit different.. my doctor said to keep eating gluten or normal diet until a biopsy, which is standard.. but I have and now I feel almost fine? I’ve eaten heaps of gluten with no problems again. Just a bit sore on the inside but not that bad. 

I don’t know I’m just wondering if a mistake has been made because it’s hard to believe... Now both my partner and I are apparently coeliac lol

I would love to hear about similar experiences? If there’s any out there.

thanks for reading

 

[trents]

6 hours ago, Cassie5016 said:

tissue transglutaminase IgA as 719cu and the normal is meant to be <20??? 😕

Ednomysial IgA positive 

 

 

Welcome to the forum, Cassie!

Both the tTG-IGA and EMA are very specific for celiac disease. And your tTG-IGA is very high. In the UK you would likely have been declared to have celiac disease based on that high reading alone. There, they often will forego the biopsy when the tTG-IGA is 10x normal. Deamidiated gliadin IgG is not as specific, meaning there is more likelihood that other causes make it positive as opposed to the other two tests. It is common for celiacs to be intolerant of dairy, either the lactose or the protein casein found in milk. Sometimes the dairy intolerance goes away after healing of the small bowel villi have happened as a result of a consistent gluten free diet over time.

In the early stages of celiac disease it is not unusual for symptoms to be erratic, causing uncertainty. You are fortunate to have been diagnosed early on before a lot of collateral damage was done to other body systems from nutritional malabsorption tied to damaged villi that line the small bowel.

[Scott Adams]

I agree with @trents and it looks very likely that you have celiac disease. Here is more info on the blood tests:

 

[Cassie5016]

5 hours ago, trents said:

Welcome to the forum, Cassie!

Both the tTG-IGA and EMA are very specific for celiac disease. And your tTG-IGA is very high. In the UK you would likely have been declared to have celiac disease based on that high reading alone. There, they often will forego the biopsy when the tTG-IGA is 10x normal. Deamidiated gliadin IgG is not as specific, meaning there is more likelihood that other causes make it positive as opposed to the other two tests. It is common for celiacs to be intolerant of dairy, either the lactose or the protein casein found in milk. Sometimes the dairy intolerance goes away after healing of the small bowel villi have happened as a result of a consistent gluten free diet over time.

In the early stages of celiac disease it is not unusual for symptoms to be erratic, causing uncertainty. You are fortunate to have been diagnosed early on before a lot of collateral damage was done to other body systems from nutritional malabsorption tied to damaged villi that line the small bowel.

Thank you so much, this is really helpful! My results and symptoms weren’t really explained to me so I was starting to enter a denial phase- but this makes sense

[trents]

6 hours ago, Cassie5016 said:

Thank you so much, this is really helpful! My results and symptoms weren’t really explained to me so I was starting to enter a denial phase- but this makes sense

Unfortunately, this lack of meaningful information and explanation from the medical community is more common than not and many new celiacs feel left high and dry.