Awaiting Biopsy

[Zhamay]

Hello everybody, this is my first time posting here. I am 38 years old, from Australia, and received the news about 6 weeks ago that I have coeliac. I had been feeling very tired and had been having severe headaches for quite some time but I didn't see anybody about it until 2 months ago when it got so severe I needed to take a week off work. My GP tested my iron which was non detectable which led to her testing me for coeliac. My blood results came back as a very strong positive. At the moment, I am awaiting biopsy. I have been listed as urgent <30 days but where I am that doesn't necessarily mean I will be seen to that quickly. Currently I have reduced my gluten intake to some toast in the morning and usually just a biscuit or a few small gluteny things during the day. I hate that I have to keep eating it until biopsy. It makes me feel tired and sick and bloated. I had an iron infusion 6 days ago, after 6 weeks of oral iron supplements. The doctor said I should start feeling better within a few days. But I don't. I need to go to bed soon after I get home from work, then even after all that sleep I am still tired. Today I woke up with a terrible headache that is just getting worse. Can anyone suggest how I should best manage my symptoms while I await my biopsy?

Thank you.

[GFinDC]

Hi Zhamay,

Welcome to the forum!

I hope you can get in sooner for the endoscopy.  Sometimes doctor offices have a standby list you can get on for cases when someone doesn't show up, and you can take their spot.  Might be worth asking about.

You don't need to eat a lot of gluten to keep the immune reaction going.  One slice of gluten bread daily is fine.  You may find it easier to eat the gluten at night before bed and sleep through the initial symptoms.

Another thing you can try is not eating any diary.  Often celiac disease damages the villi that make an enzyme called lactase.  Without the lactase enzyme dairy sugar (lactose) doesn't get digested fully and can cause symptoms.

Some other things that might help are peppermint tea for bloating, and avoiding carbs and sugars.  Carbs are turned into sugar in the damaged gut and they end up feeding bacteria that can cause symptoms.  Sugar is already bacteria food.

Try to avoid processed foods and stick to whole foods, like meats, veggies, nuts, eggs.  Plain aspirin and Pepto Bismol can help with some symptoms.

I hope some of these ideas help.

[Zhamay]

Thanks for that. I didn't realise I only needed to eat one piece of bread - that sounds much better than the amount I have been having!

I was going to ask about dairy as well as I've noticed sometimes that makes me feel a bit off too. Any suggestions about what type of milk substitutes are better? Soy? Almond?

 

[GFinDC]

15 minutes ago, Zhamay said:

Thanks for that. I didn't realise I only needed to eat one piece of bread - that sounds much better than the amount I have been having!

I was going to ask about dairy as well as I've noticed sometimes that makes me feel a bit off too. Any suggestions about what type of milk substitutes are better? Soy? Almond?

 

I don't recommend soy to anyone actually.  It is nasty stuff in several ways.  Almond milk or coconut milk or rice milk are better choices IMHO.

[Zhamay]

OK I will give those a try. What is nasty about soy?

[GFinDC]

Hi Zhamay,

For one thing soy is a goitrogen, which means it interferes with thyroid function.  For another there was a study some years back that showed baby rats fed soy formula had slower maturing gut cells.  Anything that interferes with the gut like that is potentially bad for people with gut problems IMHO.  Almost all soy is also GMO now, so it has that stigma on it.  Soy is also one of the top 8 food allergens in the USA and is a top allergen in other countries.

Open Original Shared Link

You can Google "is soy bad for you?" and find more info.

[Zhamay]

Thanks. It looks like I have plenty of questions for when I see my dietitian!